Jeff's Journal

yIKEs

2008-09-15T11:45:00.000-07:00

A few folks weathered through the storm in Clear Lake and told us all was OK at our house. We called our answering machine and it picked up. We knew we had power at home, so we packed up from Conroe and headed south. We traveled across to Porter, Texas and took 59 south. All the feeder roads south of Humble were filled with water and the daily catch of cars that did not make it. We made it to 610, went east to the Gulf Freeway, then south to El Dorado and it was clear sailing to home.

It was eerie driving in. It was similar to driving home after the Rita evacuation, except this time there was damage. Billboards were snapped in half, the streets were vacant and wet, lights were down and dangling, trees down and branches littering every street, leaves plastered on surfaces and some looked as if they had been shredded and spewed out with a blower.

Driving in our neighborhood was like an obstacle course to avoid downed limbs. We drove up to our house and were relieved to see there was minimal damage – several shingles off, branches broken and debris everywhere. (My imagination had given me another scenario.) The first impression as we got out of the car was the overwhelming smell of pine. It was like walking in a lumber mill. The visual was like a landscaping company exploded in the street, but surveying our street; there appears to be no substantial damage.

We walked in the house and the AC was working, the television reception was good and the Internet was available. Who would have thought? Looking in the back yard, our chinaberry tree leans looming closer to the house and part of the fence is in the neighbor’s yard. We are hosting refugees, offering freezer space for orphaned frozen goods, and beginning to clean up – thankfully beginning to clean up as it could have been a different outcome.

Tonight, we will meet with a disaster relief group. UBC still has no power, but there is hope we will be a staging area for the months ahead.

The Next Phase

2008-08-22T03:03:00.000-07:00

The sabbatical this summer has been organized around the exploration of the missional church. I was at CBF’s General Assembly earlier in the summer to network with other US churches on the missional journey. (I have discovered that the term “missional” has no concrete meaning.) Then it was to study the founding of the Modern Mission Movement through the letters of William Carey and Andrew Fuller at the Angus Library. And now, the next phase, is to visit with UK missional leaders. The venue is the Greenbelt Festival.

Part of the global discussion (or at least in the US and the UK) has been centered on the engagement of young adults in the Christian journey. There are incredible facilities in the UK, but you open the doors and wonder where are the people? The old nursery song has a different ending these days. This has caused the Church of England to invest in new forms and fresh expressions. Most of these leaders refer to their work as building a missional community.

Last night I was invited to a gathering called Feig. Feig is a missional community out of Gloucester Cathedral led by Michael Volland and his wife Rachel. Michael is finishing his vicar training at Gloucester Cathedral and hosted the gathering. It was good to see some of my UK friends and make new acquaintances.

The evening was very “organic”. Dinner was in the Lady Chapel with only candles to illuminate the room – very medieval and appropriate since this section of the cathedral was built in the 13th Century. Afterwards, the group moved to the nave to walk the labyrinth as a prayer for preparation for Greenbelt. The church building is very beautiful and incredible. I don’t know many churches in the states that have a master mason on their staff, but one is needed for this church. (But then again, I noticed their coffee shop did not have chicken fried steak on the menu. Such is our heritage.)

I left with a couple of impressions. One was that the Cathedral of such influence has recognized the need for “fresh forms” to allow Michael to lead this new work is remarkable. As mentioned above, this is an incredible facility (and was used in one of the Harry Potter movies) and using the venue, there are many possibilities for utilizing the forms of the past to reach the population of the present. I admit, I was a bit envious of the atmosphere created for the dinner and then the expanse of the nave with a solitary light on the west window and candles around the labyrinth.

The other impression I had was that this type of work has moved beyond demographics to psychographics. There were many people younger than me in the room and that has been a common experience for the last decade of this journey. But, last night I noticed there were many people my age and older in the room and some had been commissioned by the Anglican Church to begin new forms work. I sought out these folks to hear their stories. I heard a different verse, but the same chorus of those who had felt far from “the church”. I think this is something new to consider. Rather than thinking demographic, there is something broader to consider.

The other impression came from being lost trying to get to the cathedral last night. (I am nothing but consistent with my driving.) Again, as I have seen in every city in Europe, there were many women wearing chadris walking the streets of Gloucester from the markets. Again, I cannot help but believe the discussion is moving broader and deeper.

New Road at Oxford

2008-08-19T12:51:00.000-07:00

Worship Sunday morning found me at New Road Baptist Church. It is where the Baptist assembled on the new road at Oxford. The “new” road was built in the 18th century, the first new road since the 13th century. (And it remains the newest road in the city center!) The newer roads today are on the ring road well beyond the city center.

There is evidence of Baptist in Oxford from 1653. Baptists met in houses until 1715. Baptisms took place in the river near the Hythe Bridge. One report of a baptism tells that hundreds of people gathered and would “shout and make it ridiculous.” (Dissenters were not understood!) Baptist would seek other places to gather until the 1798 when the current building was built.

The building looks the same as it was in 1798, except the graveyard has been relocated and the church has just finished an agreement with the city for “Bonn Square”. The church has allowed the city to create a park on their property. This is a very clever move as it opens up visibility and accessibility for the church to the community. The church is even considering a name change to Bonn Square Baptist Church, although the sign says New Road Baptist Church at Bonn Square.

Baptisms are no longer in the river with people mocking. In the corner of the church building is a baptistery. The local church is about 100 people, although their church planting work reaches more than 1000 people through other Sunday schools and churches started by New Road.

The service was similar to many in the US; Call to Worship, a contemporary metaphor for the biblical text, singing of Hymns (and one chorus), prayers, readings from the New Testament and another from the Old Testament, a very fine sermon from the former Principal of Regents Park, passing the plate (offering), passing the peace and the Lord’s Supper and a blessing. Following the Blessing, the congregation sat as the organ played a final piece for reflection after which the congregation departed. It was rather nice to have a moment before leaving the sanctuary to head back into the city.

I spoke with some of the church members about the “changes” in their church. They seem very agreeable with the arrangement with the city and are excited about the opportunity for renewed out reach to the community with what the new park venue will allow.

There was other discussion about having to create a new church constitution. They have had their confession since 1780, but because of changes in the government’s Charity Commission, the church must change their constitution to reflect the Commission’s template. It was interesting to read through their confession as it affirms both infant and believer’s baptism. I’m sure as they sought unity in centuries before, they will find it in this era as well.

Driving

2008-08-14T12:40:00.000-07:00

Driving on the “other side” of the road has been interesting. The only terrifying moments are when I make turns. Inevitably, I head for the US lane rather than the UK lane. It has made for some interesting moments and so far, no tragedies. I find it easier to drive when I follow another car. Highway driving is pretty easy - unless you miss your exit. Once on a highway you are on the highway. In my experience the UK highways are not organized with get-off and get-on places next to each other as in the states. If you make a wrong exit, you get to enjoy the countryside for a while.

Driving in the UK is not as much a problem as is parking in the UK. There is a new program at Oxford that prohibits cars being parked in the city center. The longest you can park a car without a long-term permit is 2 hours. On the orbital or ring road (or what we would call a loop around the city) are parking lots. You park your car on the outer realms of the city and take a bus from the outer realms of Oxford to the city center and then a bus back out of the city center to the car. (The locals tell me the pollution is better since the institution of the “no car in the city center” policy.)

Another aspect of the European road is the roundabout. Roundabouts are terrifying when first encountering them. There are no lanes and once you have entered one, you have to watch for your exit or just keep going around again (and again) until you determine your exit. It is like going into a centrifuge and then being slung out to somewhere where you hope to go. Upon reflection, they really are a good idea, once you get accustomed to them.

I will add an addendum to roundabouts. The ones in Paris are quite interesting. While driving there I had to think a different mathematics of driving. In the US, we think in quadrangles while driving, though, in Paris thinking fractals and Tinker Toys made the experience more manageable.

The Arc de Triomphe roundabout was the most interesting encounter. The family marched up the Champs Ellysees to see the grand arc and watched 11 spokes flood into one hub. Some in our party were already saturated with French history and not too interested, until the fun began.

The best encounter involved a female bicycle rider. From out of nowhere, she flew into the roundabout with the rest of the traffic. There were motorcycles and cars and big buses and this one little bicycle. She did not hesitate, but with great gusto pedaled into the jumble of vehicles.

Her pedaling speed increased as she entered the roundabout. (She had done this before and knew how to navigate through the vehicular maze.) Armstrongian speed and endurance were her allies in this urban rite. She could have given the bicycling wicked witch from the Wizard of Oz a run for Toto and won.

Things were going fine. Well fine, until the big bus (see picture) began to bisect the roundabout. As the bus began to cut a path through the traffic, cars were slamming on brakes and the motorcycles were being cut off and everyone was giving way to the large motor predator. However, the bus came a little too close for comfort as it cut through the roundabout almost clipping the basket on the front of the bicycle. The audience on the sidewalk gasped in unison.

Then the most amazing thing happened. The woman bicyclist produced some French hand gestures (one handed, mind you), pedaled faster in front of the bus, cut it off and then continued on her way past the arc. It was astounding to watch her take out the T-Rex of the roundabout pedaling her bike in her pink tennis shoes. Cheers rang out from the onlookers, who had expected another outcome. Needless to say, I have a new respect for French women and chaos theory.

This one encountered enamored our party to “arc watch” for a good while. It was one of the best shows of the afternoon, but “Joan of Arc” was the best performance of the day.

What Do You Measure?

2008-08-12T10:46:00.000-07:00

In the not so olden days, we used to measure some pretty easy things. Primarily, that would include just “number” things; budget numbers, people in a worship service, people in Bible Studies and well, you get the picture. It was what some folks called nickels and noses.

But then we started asking some questions about how the investment of time and money into UBC was making change in the community and the world. This question began to ask if what we counted really helped us approach our mission in the world. We still struggle with metrics (what to measure) and I think it is good to wrestle with these things. As a matter of fact, that was part of the conversation around the staff table as I was leaving for sabbatical.

One of the first things I did while on sabbatical was to attend a couple of conferences. The invitation to one of the conferences this summer came through another conference I was invited to attend last year. Last year’s conference was with the White House’s Faith Based Initiatives office. That conference was in Austin last year and I went. I did not know a soul in the room. It was a large convention center filled with people, so maybe the people I knew were across the room, but I doubt it.

The conference a couple of weeks ago was with the One Star Foundation, the Texas equivalent of the White House conference. Again, I walked in the room and did not recognize anyone. The conference started with the usual icebreaker around the table where you introduce yourself to the others at your table and then a person from the table introduces your table to the rest of the room.

As we got going, there were people from various state organizations at my table. One person was with the Texas Department of Youth Corrections and when I introduced myself, she turned to me and said, “I love your church.”

She had never been to UBC before, I had never seen her before, but she loved our church because of what we had been doing in the community. She worked for the boys home in Crockett, Texas, and she had heard from one of her colleagues who was bragging about what UBC was doing at the Youth Village on Clear Lake mentoring the students in that correctional unit.

As we talked, I was amazed. I had no clue about this woman and she had no clue about me, but she loved UBC because we cared beyond our campus. She then began to ask me if UBC would want to expand the ministry to her area. I told her I did not know at the moment and it would be a couple of months before I could get back with her, but I did know a former UBC family living in her area that might be interested in helping their church get involved. (I don’t know the outcome of that conversation, but the former UBC family expressed interest.)

After that exchange, it was on to introductions around the room. (FYI, this was like a karaoke gone bad. Some people took to the mic for WAY too long and the facilitator realized it was out of control!) I was elected to introduce our table, so I got up and introduced the people at our table and myself. After that exercise, it was break time.

At the beginning of the break, another woman that I did not know came up to me and expressed how happy she was that UBC had become involved at Whitcomb Elementary. She worked for one of the after school agencies at Whitcomb and went on and on about how much good UBC has done for the school.

I was pretty amazed. Here I was, again, in a room of people (although much smaller than the Austin meeting) that I did not know and out of the blue two strangers came to talk to me about UBC’s presence in the community. After that conversation, I headed out to the snack table like a good Baptist.

Upon returning to the conference room with snacky breath, another lady I did not know came up to speak to me. She was from an agency in Houston’s Third Ward and she expressed her pleasure of UBC. As I got her information, her agency works with the children from the Third Ward that UBC has hosted in Vacation Bible School for the last two years. She spoke of how it was a good experience for her children and she expressed her gladness that UBC opened the doors to the children as there had been other churches that “passed” on the opportunity.

Three conversations in one morning out of a room full of people I did not know. Back to the question of what to measure. I don’t know exactly what to measure, but I think these conversations are worth weighing. Most of our staff can attend religious meetings and UBC is a known entity, be it a Baptist or a non-Baptist meeting. However, to attend a non-religious meeting and have people come up and say “thank you” is something worth paying attention to, IMHO. As I think about it, I cannot recall thank you statements at the religious meetings, so maybe there is something else to pay attention to.

Thank you UBC for caring for the community. The light is being shown.

"Home" for the Next Couple of Weeks

2008-08-11T14:05:00.000-07:00

Shelley and Skyler departed from Paris a couple of weeks ago so Skyler could be ready for band, which started a month before school starts. (Go figure.) That left Weston and me to journey around getting some projects underway. It involved driving over 3000 km (almost 2000 miles) in northern Europe and several hundred miles in the UK.

Tonight, I unpacked my whole suitcase for the first time. I’ll be at Regents Park College, the Baptist College at Oxford, for the next two weeks.

The accommodations are your garden-variety dorm room. My room is on the quadrangle across from the library and most of the students are gone. The only students left are DPhil graduate students and many have this month to finish dissertations or they will not graduate. Procrastination must run in research arenas.

The only change to the room from when I was here in the late 1980s is that the fireplace in the room has been filled in and an electric heater fills the hearth. The weather is turning cooler and in the evenings a jacket is needed. (Cannot wait to get back to Houston’s heat and humidity!)

My days will be filled with reading the letters and documents from the late 1700’s and early 1800’s. The evenings will be filled with searching leaky wifi connections so I can get online and get caught up on what the family has been doing. (The only downside to this arrangement is that my family is not with me.)

I was able to read through some of the letters last week. It was exciting to read the letters of William Carey and Andrew Fuller. For those not up on their Baptist History, these two men launched the Modern Mission Movement. William Carey was the first Baptist missionary and Andrew Fuller was the pastor in England who raised the support to sustain the mission movement.

They really had no idea what they were doing. The theology of the day was not conducive to a mission movement, but Fuller, Carey, along with Ryland and Sutcliff were four friends who began to see things from a different perspective.

The documents are a little dusty and difficult to read as they are handwritten, the ink is fading, the writing style is a bit different from contemporary English and some of the portions of the documents are missing due to age and having been in a tropical climate. Also, they are dusty and there is a concern in the back of my mind that an inadvertent sneeze would wipe out a hunk of history. Thus could be my legacy to scholarship.

Over the weekend, Weston helped me think through a strategy for reading. Last week we organized the letters in chronological order trying to see which letters were responses to previous letters. The letters were sent on ships from England to India via the East India Company and the exchange could take up to 6 months or more. Also, it is apparent some of the letters are missing, so as Weston suggested, I’ll request Carey’s journal, as it may be the most complete accounting of his missionary career. Hopefully, it can be pieced together.

So what am I looking for? Well, I’m not sure. That is the beauty of research, you hunt. But I hold a belief that the days in which we live are transformational days and just as models in other industries have changed, the models for the modern mission movement will experience a change as well. I think the founding concepts of a movement are important. The concerns that brought about the conversations are the important seeds that can hold insight for transitions. That is what I hope to listen for in these letters. What were the concerns? What were the insights? And can those insights help to launch a post-modern mission movement? This is where I my head will be for the next couple of weeks.

Weston Heads Home

2008-08-10T15:24:00.000-07:00

It is Sunday night and Weston and I are in a hotel near London’s Heathrow Airport. I don’t know how we got here. I had Internet instructions to the hotel from Oxford. However, Maidenhead was not in the instructions. Somehow we got lost. Imagine that. (I’ve been lost all over Europe this summer.) Fortunately, there were some helpful people with very good instructions. The hotel manager says we are only 15 minutes from Heathrow. I guess we will schedule about an hour to get there given my record.

Weston has helped me navigate around the UK and all over northern Europe. I will miss his ability to get me to destinations, but I will miss his company much more than his navigation. I have had a great time just being with him. We drove from Paris to Marseille to The Netherlands with some great adventures collected along the way. (Did I mention I was driving and I’ve been lost?)

He has endured my picture taking, sitting in on meetings with missionaries as we make plans for trips next summer, sitting at the Angus Library at Oxford University while I went about organizing reading and he has been very patient through it all. He has been patient about getting his license, too. He turned sixteen while we were in Paris and has been waiting almost two weeks. The waiting is over on Tuesday!

I have trouble believing he is sixteen years old. Tomorrow morning, he gets on a plane to Houston by himself. In a couple of years, he will take the license he gets this week and get in a car and drive off to college to some destination towards his future.

These past couple of weeks with him has been wonderful for me to check in with him. I realized during this time how much energy the disease took from my life. The time it took to feel better (and then doing dialysis) was not only time stolen from my life, but also stolen from my family. I can get a little angry if I linger on it, but these past weeks have been good for reinvesting in the important accounts of life.

Time in Memphis

2008-07-06T20:36:00.000-07:00

Memphis was a couple of weeks ago. I was there to attend the CBF General Assembly. I am not one for convention type meetings and their business meetings, but fortunately there were some friends there and I made some new friends.

I ran into the Carpenters while I was there, all three generations. Logan and Christy have accepted a position at Second Baptist Little Rock. Kay and Rick were there for the meetings – the meetings with the grand. (There was only one time I saw the grandbaby unattended, but that is a story about Kay I’ll have to share at another time.) All was well with the Carpenters.

In one of the of business sessions, I ran into John Moore. (The business sessions were not at B.B. King’s, but if they were, I’d make all of the sessions!) John worked with me my first summer at UBC. We planned the first UBC Youth mission trip with the Navajo. He started this year as the Missions Pastor at FBC Abilene. After the business session, we headed to B.B. King’s on Beale Street for BBQ and Blues. We had a good time catching up and remembering events from the summer of `90.

One of the reasons I was in Memphis was to share stories of UBC and her work - not to attend the business meetings. It was very rewarding to talk about UBC’s projects and how they are accomplished.

Memphis was a great city for walking around. The General Assembly will be in Houston next summer, July 2-3, 2009, at the George R. Brown. Don’t know about the walking for next summer.

Hesitant

2008-07-02T06:45:00.000-07:00

I am hesitant to write this. Last time I proclaimed to resurrect this blog, there were circumstances unforeseen that abducted the time I allocated to write. (Just check the spotty postings to confirm.) Fortunately, those circumstances have passed and perhaps there is time to write this summer.

Over the next several weeks, I will attempt to post a blog on Fridays to share what is going on with Sabbatical 2008. The plans are varied for the next several weeks and I am not sure about Internet access for every week, but let’s give it a try – again.

Peer Pressure

2007-02-09T10:11:00.000-08:00

I have attempted to “restart” this blog several times, but I have been ambivalent about how to proceed. The origin of this blog was to help my friends around the globe to stay in touch with the journey through decline and then the thankful journey to recovery.

It has been a year since I was released back into the world of possible infection as an immune suppressed person. (And as I type, I have been infected!) Things kidney are going very well. The last visit with the transplant clinic was two weeks ago and they are well pleased. They bid me farewell until August. (I am getting more comfortable with the lack of frequent data.)

This past year has been a time of daily celebration. After five years of increasing anxiety, we decided we would live the bonus days as days of celebration. So, last year was not given to too much other than a heavy dose of carpe diem - literally. We will continue the carpe living and will give this year to ponder what is next.

But back to the question of the blog. I’ve decided to give in to peer pressure. Many friends have peered into the blog on a frequent schedule. After each peering, they have sent an email wondering what is up and what is next. I don’t think of myself as narcissistic, but thanks to the encouragement of my peers who peer into here, I’m transitioning out of just renal topics to a journal of broader topics and thoughts.

Thank you to those who have encouraged me to write. I’ll attempt to post, but remember, I’m writing, not editing! So please peer away as I give in to the gentle pressure to post more often.

Keeping An Appointment

2006-09-13T23:10:00.000-07:00

This past week was crazy. The Waldo Family was in Cocoa Beach, Florida before Labor Day to catch the Atlantis Shuttle launch. However, it did not happen that week. Since two buddies are on this mission, I (Jeff) went back to Florida with Robert Creech, Randy Targhetta, David, and Mary June Byford to support Martha Tanner and family as well as Sandy Ferguson and family while their husbands Joe Tanner and Chris Ferguson were in the final preparation for launch. (I think I recall David Mitchell showing up for a few hours, too. But it was rather late and a short day that followed.)

Randy and I departed Houston on Tuesday morning after Labor Day. Tuesday late afternoon was the "not-too-night" viewing (but still a cool viewing of the shuttle) in preparation for the Wednesday launch.

As you know, the Wednesday launch did not happen. Nor did it happen on Thursday, but Friday was the big day. (There is a story about hotels and their check-out policies at Roberts blog that journals our Groundhog Day events.) We were told at the first launch attempt that Friday closed the launch window, so our hopes and anticipation were on Friday.

Friday was exciting. We were up, at KSC early, and in line to load the bus to the Saturn V Building for the launch viewing. We enjoyed the presentations at the Saturn V Building, the weather was great and at T-9:00 minutes there was an announcement scrubbing the launch for the day. So close.

After the announcement, we despondently boarded the buses back to KSC. However, there was a glimmer of hope. The launch window was extended to Saturday. The discussion was to stay or not to stay. Randy spent one more night and David came back out to witness the launch. (This made my fifth attempt to see a launch without success. I have since heard I am no longer invited to any other launches and astronaut friends are giving me bogus dates for their launches to keep me away. I have also heard I’ve surpassed Steve Lindsey as the jinx.) Robert and I headed back to Houston. I could not stay due to an appointment I made a year ago. It was an important appointment to keep.

Actually, the appointment was a reunion of sorts. Thursday was the one-year anniversary of my kidney transplant and the kidneys were having a reunion on Friday night. Jerry Wooley, my donor, was in H-town and we have a standing appointment for dinner around the time of the transplant every year. No matter how great the launch was going to be, you don’t stand up the guy who graciously donated a kidney to you.

Jerry is doing great and is in good health. After the transplant, he departed Houston to be the VBS guru for LifeWay and loves his new job. Apparently, Nashville does not have great enchiladas, so that was the request to fulfill. We spent Friday night at one of Jerry’s favorite Tex-Mex places getting caught up. He heard about the saga of my 15 prescriptions designed to suppress my immune system as well as the stories from the clinic. I hope he heard my appreciation. I heard about his journey to Nashville, adjusting to the new job, his non-destructive plumbing problems and house fire. While we ate and caught up, I was thinking that last year at this time, I was tethered to a machine and never felt like getting out. This year, other than some side effects from the meds, life is great! Thanks to Jerry and his gift to me.

Jerry and I are on again for next year. Locate TBD. In addition, who knows, maybe I’ll see a shuttle launch some time. Maybe STS-117’s April launch.

Yesterday

2006-07-13T06:48:00.000-07:00

Yesterday, my friend had his transplanted kidney removed.

His sister donated to him last spring and things have not been going well. The kidney did not “wake up” after it was transplanted. He was dialyzed a couple of days in the hospital and after a week or so things became better, but not great, and he was released from the hospital to get on with life. In the past two months, he has had to increase his time in the dialysis chair. In the past several weeks, he was back to the pre-transplant schedule of dialysis and due to continued infection; it was time to remove the transplanted kidney.

I’ll stop by the hospital and see him today.

Last I checked (and that was a couple of years ago), the average life of a transplanted kidney is about ten years for a living donor transplant. Transplanted peeps live with my friend’s scenario hanging around in the back of our heads; waking up one morning back at square one. Some days, the thought is less intense, but today will be one of those intense days.

I’m not sure what I’ll say to my friend when I see him. The juxtaposition will be obvious and he probably does not need too many words.

06.06.06

2006-06-06T16:51:00.000-07:00

Today marks the bonus year. It was around this time last year the projections were not too good for me making it. So, I feel like I got a pretty good deal of another year – thanks to Jerry.

However, today I had closure with another kidney friend who did not make it. I eulogized a friend. She was a friend’s mom and our relationship started at St. Johns Hospital in Nassau Bay last January. It was my first week back in the office after recovering from the kidney transplant and my friend told me his mom was having some kidney problems and it was approaching dire circumstances.

When I arrived in the hospital room, I introduced myself to her husband. She was asleep in the hospital bed, ashen and frail. Her husband and I talked about her condition. Through my journey, I am fluent in the language of bloodwork levels and the symptoms of uremia. As I heard her story and her numbers, I was curious as to why she was not already on dialysis.

There were frequent phone calls that week to check on progress and eventually she was prepared for her first dialysis treatment. As the weeks went by and she was undergoing dialysis treatments, her health began to return. I would get phone calls about her good progress, the care she received at the dialysis center and the recent scoop on the dialysis technicians – since many were my friends. A common conversation was to check on her fistula to see if it was mature enough to remove the catheter access.

There were discussions of a possible transplant, with her husband as the donor, but other health complications prevented that possibility. After some time, she was able to qualify for and her husband was trained to administer home hemo-dialysis which allowed her blood to be cleansed daily.

Eventually, she made a turn around and was back to living life.

In one conversation, she expressed her excitement about a trip to New York. When she returned, she relived the great time she had and the great food she was able to enjoy again.

Her other son and wife came down for a visit on Memorial Day weekend and the time was spent doing things that only a few months before had been things that she could only hope or dream to do.

There were other plans of travel and fun times, but they were interrupted.

She had a stroke and heart attack on Memorial Day and after an agonizing couple of days in ICU, it was apparent there was nothing else to do. She had made her decision clear if she were ever in this situation. So last Thursday, I was with my friend, his father and brother as they directed the medical professionals to fulfill her wishes.
My last time with her was similar to the first time I met her, at the side of her hospital bed at St. Johns hospital, except this time it would be the night before she passed. It had been a busy day and I stopped by the hospital late and I was able to sit with her for a while. The family had gone for the day, but her favorite show was showing on the television. Although she did not respond, I spoke with her about the courage and strength she displayed since meeting her in January and how she had given that to her family in this time.

As I left the hospital that night, I reflected on the interlude about her progress and return to health. I thought of it as a gift, one of those good gifts – a time for last memories to be good memories. I did not know her very long, but we were both members at the “fellowship of dialysis” and from my interaction with her, I had the opportunity to observe a strong woman realizing a second chance and her attempt to live life abundantly. I believe she finished well.

The Anniversary of the Worst Week of My Life

2006-05-30T13:12:00.000-07:00

Last week marked the one-year anniversary of the first week of dialysis. Last year at this time, I had already heard if I did nothing, I would be dead by early June. Those words and the data from my nephrologist encouraged me into dialysis.

Dialysis required surgery for an access. The access was a tesio catheter where one port went to the right ventricle of my heart and the other was spliced into my jugular vein. At the beginning of the worst week, I remember waiting all afternoon to speak with the vascular surgeon who was to perform the operation. The surgeon was held up in surgery. Waiting in his waiting room were many other people being held up - literally. As I looked around, I noticed I was the youngest person in the room and one of the few without a walker. This would be my first experience of skewing the age curve in waiting rooms and clinics.

After a two-hour wait, the receptionist entered the waiting room to announce the surgeon was having some “complications” in surgery and he would be another couple of hours before returning to the office. Hearing that the surgeon was having some “complications” did not do much to encourage some of us in the waiting room. Heads turned to loved ones to weigh the thought of waiting another couple of hours. Half the room ambled out within ten minutes. I wanted to walk out, but it was impressed upon me I had to start dialysis and the only way to do it was to have this surgery and the only way to have this surgery was to meet with the surgeon first. (I appreciate the concept that it is always a good thing to actually meet the person who plans to cut on you before you meet them in the operating room. Not that you will see the person cutting on you, but it is a nice thought that perhaps the surgeon will remember you and remember what needs to be done rather than just being “next” on the schedule and hope you have been wheeled into the correct OR and they will perform the correct operation on you.)

After another three hours, the surgeon arrived. A five hour delay takes its toll on a schedule and as we entered evening only an elderly man was in the waiting room with me. He went first and after another 30 or so minutes, I took my turn. At the end of the appointment, I had a surgery time. Little did I know, this would be the first of many waiting times.

The surgery was two days later. It was scheduled for 9:00 am. However, at 10:00 am I was still in waiting mode in the pre-op room. Finally around noon I was rolled into the OR area. It was an area with gurney after gurney lined up ready to be shoved into the appropriate OR.

At around 1:00 pm, after waiting in formation for an hour, the anesthesiologist came by to check on me. My anesthesiologist turned out to be the son of my sons’ pediatrician. I tried to talk him into telling me that I looked good enough and there was no need to start dialysis. My denial of the situation did not transfer to the medical community. After our conversation, he offered me “a little something to take the edge off” and I agreed to take a trip to la-la land.

Whatever he gave me was great. I woke up around 3:00 pm and began to feel my chest to see what had been done only to discover nothing had been done. I was still waiting. I wanted to ask him for another round when my surgeon appeared. It was now my time.

His nurse slowly guided my gurney into the OR and I knew this was the end of my denial. This was also the end of how I was to ever live life without some sort of assistance. From that moment on, I would never be able to sustain myself without the assistance of a machine or a donated organ and tons of drugs. It is amazing how with one short trip life can be altered forever.

Unfortunately, I was awake to remember the extremely cold feel of a metal operating room table on my backside, but before the cold steel could heat up enough for my comfort, I got another round of the lights out drugs. The next thing I remember was the incredible pain in my chest as I was coming back to consciousness. I remember feeling my chest to discover the two tubes hanging out. These two tubes would be the tethers to a dialysis machine and the only way I would be able to live long enough to have a transplant.

The rest of the day was pretty much a blur as I attempted to replicate lights out with the little pills offered upon departure from the hospital.

The next morning found me in a dialysis clinic submitting to the new reality that life was in a free fall and only these machines would be able to slow and steady the fall. I remember walking in the clinic and ushered through the protocol and procedures. Looking around, once again, my presence skewed the age. Many of the people were very elderly. Under my breath, I would refer to the clinic as “St. Peter’s Waiting Room” as I was sure the next venue for many was demise. It was my first recognition that I was on life support.

I don’t remember being fearful, but resolved. Resolved that this is the next phase of what I must do to stay alive. The clinic staff has made mention that I was the calmest new patient they had ever worked with. They asked me why I thought I was so calm in such a time of turmoil and trauma. It was a time to share about faith and sovereignty.

The first day of dialysis was short, only two hours. The following treatment was a three-hour episode the next treatment was four hours and it started the Tuesday, Thursday, Saturday schedule. It was only a week, but through the worst week of my life, I felt hurled and squeezed through a threshold that landed me in a seat in a dialysis unit.

It has been a year since that worst week and things are much better. Initial testing last week showed the donated kidney is functioning well – as long as it is helped with a couple of handfuls of drugs twice a day. People have puzzled over taking so many pills. But I tell them it could be worse.

The Beginning of Anniversaries

2006-04-12T20:17:00.000-07:00

This month marks the beginnings of one-year anniversaries of intense moments and the graying of my hair. It was a year ago in January my blood work revealed the disease had progressed. By February, the docs said I was sick enough to begin the transplant evaluation. It was a year ago this month the docs said I was well enough to survive a transplant. It was an odd time – having to be sick enough, yet well enough to endure what was ahead!

This month is the anniversary of when Dan, my friend, started the process as Donor #1. It was one of the most amazing times in my life to hear my friends genuinely pour out their care and concern for me. It was the hardest time in my life to make a decision of who would be first to begin the evaluation process.

Nonetheless, this is a year to celebrate.

Dialysis Clinic Visits

2006-04-05T22:12:00.000-07:00

I went back to visit the dialysis clinic about a month ago. Things had settled at the office and I promised my friends at the clinic I would return as soon as I could after the transplant to say hello.

Driving up and parking was not a problem. However, touching the automatic door opener and stepping into the clinic was another deal. It was the most bizarre feeling of relief that I could walk in and walk out without having to give four hours in the place and then this feeling of OH MY! I was really in this place and really this sick. (Denial runs deep in my veins.) It was overwhelming and I almost had to turn around and leave.

I pushed through the urge to turn and run and pushed the automatic lever to open the door into the clinic. Instinctively, I went to the right to weigh myself and then the charge nurse saw me.

It was a good reunion with the staff and then I spent the next three hours visiting chair to chair with my former fellow patients. It was sad that a couple of them had died as their bodies finally just gave up, but the more common experience was going chair to chair visiting, getting caught up and encouraging. One lady did not recognize me. She said I looked familiar, but she had only seen me in my sick days and was amazed I had color.

I went back again the following week. It was still a little odd, but I had a mission to accomplish. I had sixteen quilts to give to patients. UBC has a quilting ministry called “Stitches of Love” and one person in this group heard me complain about how cold the dialysis clinic was kept. They had plans to give me a quilt to take to dialysis, but it arrived the day of my transplant. (And yes, hospitals are cold, too.) Over the past several months while I was recovering, this group of ladies was glued to their sewing machines and cranking out the quilts. It was a kick to take sixteen quilts and give them out to my dialysis friends. My friends could not believe these ladies made the quilts and then wanted them to have them. Every person was appreciative and happy to have the warmth!

April is Donate Life Month

2006-04-04T13:34:00.000-07:00

April is Donate Life Month

The transplant community has moved from one week of emphasis to a whole month!

I think it is appropriate that Donate Life and Easter are in the same month. Transplant recipients know a little bit about substitutionary atonement. If Jerry had not donated, it would have been a much longer wait for me. Because of his donation, I am able to pursue an almost normal life.

If you have not considered organ donation (or even blood donation), please evaluate the reasons for why you have not taken the initiative. A simple act can have huge results.

When you decide to be a donor, you need to let your family know your decision. If you click on the “Donate Life” logo above, it will take you to a website that can teach you how to communicate your desire.

Digging Out

2006-04-01T13:59:00.000-08:00

I have been back to the office for about two months. It has been a time of “digging out” from under all the backed up work that could not be done from home. Emails are down in the 1700 range and slowly reducing.

I was supposed to head to the hospital next week, but there was a scheduling “glitch” and the next visit will be in May. I suppose things are going well enough to postpone a month. I caught some bug and have been fighting it for almost a month. I now understand why there is so much caution. Being immune suppressed, the best strategy is to not get sick in the first place! I should buy stock in Purell.

It has been interesting being back. So far, several people have called asking me to talk with their friends or families who are facing ESRD. Those conversations have been very fruitful and fulfilling.

Back in Public

2006-01-29T02:22:00.000-08:00

Last weekend was my first weekend back in public. After being quarantined for these months, it was nice to be out and about. I head back to the hospital this week to see if there are any “issues” with being out. So far, things seem fine in spite of the height of the flu season and being around a couple of thousand people.

Back in the office (and I moved to another office), it is as if I never left. A church office is like stepping in a river. The water continues to rush about if you put your foot in or take your foot out. Some of the conversations were the same as when I left. However, coming back to them was not the same. I guess new leases on life give you another insight.

I made it back to the usual schedule of events and held up energy-wise. I forgot how long some days could be – especially Wednesdays.

Vampire Hours

2005-12-06T10:18:00.000-08:00

I was cleared to drive, so I asked my doctor about getting out and about. I am still being advised to stay away from crowds and sick people. (Yet, I have to go to the hospital almost every week. Isn’t that where a large concentration of sick people congregate?) Until otherwise released, I have resigned myself to what I call vampire hours. If there is an errand to run, I do it after midnight. I figure there are fewer people out at that hour of the night. It has been very interesting to see what goes on in my community during the third shift.

I headed to Wal-Mart the first time I ventured out after midnight, but even after midnight the parking lot was full. Last time I was in Wal-Mart it was before school started. It was like going to the United Nations. There were multiple nationalities (and languages) fighting to get notebooks and pencils. I am not sure who is in Wal-Mart at the midnight hour, but the thought of catching a virus from another country crossed my mind, so I drove on.

I drove by Kroger grocery after midnight and there were no cars in the parking lot. I figured it was safe enough. I went in and there was no one in the store. I guess I have missed being out and about. I went up and down every row. It reminded me of when I returned from Korea. I was pretty busy with speaking engagements when I got back to the USA and I had not gone to a grocery store until after I enrolled in seminary. I went to get a quick couple of things at the store, but after two years away for the US and with a VERY limited selection of food for two years, I was in the store for about six hours. Talk about your reverse culture shock.

Now, if I could find an all night barber…

Adjustments, Again

2005-11-15T09:25:00.000-08:00

After almost a month on a routine regime of immune suppressants, the docs have decided it is time to change the dosing. I am in range, but at the minimal level, so the doses of immune suppression drugs have been “upped” and it is back to adjusting to the changes. Migraines and sleepless nights have returned, but as I am prone to say, I have not returned to the dialysis clinic.

These symptoms are not as horrendous as the first night. That night I did not sleep and had to keep a compress on my forehead to fight the pain. I remember thinking if life on immune suppression was going to be like that, then forget the transplant. Fortunately, things have tapered and it is bearable.

The wound from the tesio surgery continues to heal. Being immune suppressed causes healing to go slower than before. I had not given a slower healing time much thought. I was warned at the last appointment at the clinic about paper cuts and the need to prevent small things I would previously brush off from causing large infections.

The hope is when I “get out” several months from the transplant, my body will not want to reject the new organ and instead of increasing drugs, they can be decreased. I was at the hospital yesterday for more tests and while there I spoke with a patient who was 11 years out from his transplant. I was encouraged by the 11 years and was very encouraged with his dosing.

Deportation

2005-10-25T20:19:00.000-07:00

It has been a week since I was de-ported. The surgeries went well and all the ports are removed. I am collecting my thoughts about having all the ports, doing dialysis and relying on a machine to stay alive.

The post-op folks had trouble getting me awake and when they had me up; I had the shakes and was sick for the rest of the day. The discharge nurse said almost all the patients were having trouble. She mentioned something the anesthesiologist was using. (I do remember something on my face, but once I get hazy, it’s all over. We got to a “holding area” right before going in the OR and Shelley kept telling me I was in that area right before they took me into the OR for the transplant. I did not recall ever being there. When I go, I go.)

My shoulder and chest have been bruised and sore all week. But after a couple of days, I did enjoy a hot shower! I head back to the hospital this week for stitch removal and more tests.

It is odd not having the catheters in my chest and the tubes running under my skin. I guess I became accustomed to them. (I catch myself trying to feel the tubes to “check” on them.) I’m not complaining that they are gone, but it will be more of an adjustment than I thought it would be.

Surgery, Again

2005-10-17T18:27:00.000-07:00

The Astros need to win tonight. I don’t think I will be up to watching anything tomorrow or the rest of the week. I got the call and instead of waiting around for an OR (operating room), there is one scheduled in the morning for the removal of the dialysis catheters. It is back to the hospital tomorrow morning. They called to give me directions and information where to park. I was fluent in what they were talking about, unfortunately.

I look forward to having these tubes out of my chest. If there is a place called “normal” anymore, without them will get me a little closer to that location. It is easy to complain about them, but in reality, these things saved my life. I have to keep that in mind. In addition, these things helped to spare my arm. Because they worked well (and because there were potential donors), I did not have to get a fistula. Saving the extremities is important with this disease. I have thought about asking to see the catheters. I was so sick when they were put in, I did not think to ask about what they looked like. Moreover, I was so sick, I did not think to ask how they were going to be inserted and removed! (But if you are curious, here is a video. Warning: it is graphic.)

In addition to removing the catheters in my chest, they are going to do another surgery, an ureteroscopy, to remove a stent in the new kidney’s ureter. The initial procedure was scheduled to be outpatient, as an office visit. (That will never be my preference.) I have lobbied hard that this be a two-fer. As long as I am going to be out, let’s do both. Fortunately, good sense prevailed and both surgeries will be done on the same day – with anesthesia!

Later in the week, it will be back to the hospital for more testing. Compared to surgery, the blood draws are a piece of cake. I never thought I’d say something like that.

Next Week...

2005-10-10T18:58:00.000-07:00

Surgery is postponed to next week due to no OR available. OK, I'll wait a week for a hot shower.

As usual, a visit to the hospital renders yet another prescription!

One Month

2005-10-08T09:46:00.000-07:00

Yesterday was one month with the new kidney. I celebrated by going to the hospital for more tests. It was the usual encounter with the medical vampires. After a while a little blood begins to add up and by the end of the day, I just want to be done with it and be home. The results report kidney function is holding in the normal range. It is unusual to watch the white blood cell count fall. The instructions about cautious living increase as those levels decrease.

The devil drug that gives me a migraine is being reduced. However, I found out I will be on that drug for as long as the kidney functions. It will be another six weeks before it is tapered down to a maintenance level. The good thing is I am at a level where I don’t have to wear the mask and I’ve been advised to start walking for some exercise. Crowds are still out of the question.

The transplant team has decided it is time to remove the dialysis access. There is enough confidence in the kidney that this chapter of dialysis is in the rear view mirror. Monday is pre-op day at the hospital and Tuesday is surgery to remove the catheters out of my chest. Because the catheters go into my heart, I have not been able to get them wet. I look forward to a long, hot shower Wednesday morning.

What a month it has been.

Another Bruised Arm

2005-09-30T12:05:00.000-07:00

I was at the hospital all day yesterday. At the end of the day, I had a pretty black and blue arm and good reports. The kidney functioning is back on track and getting better.

Thankfully, some of the meds are being tapered. One med was removed, but two new ones showed up. (They are Legion.) I’ll be very happy when one is down to a minimal level. It gives me a concentrated migraine and has caused a rash to erupt. But, my mantra helps; I do not have to go to dialysis.

Yesterday was an interesting day at the hospital. Everyone arrives in the clinic about 7:00 and waits to register and to be called for blood draws. After the initial draw, the place vacates as folks go to eat and around 9:00 everyone returns to wait for the coordinators and doctors to do appointments in between the other blood draws at 11:00, then 1:00 and finally at 3:00.

I was watching the choreography in the room at 9:00. Everyone takes their immune suppression drugs at 9:00. It was funny to watch this entire waiting room pull out bottle after bottle of meds, count out little pills, line them out and start swallowing. Such is the way to life.

It was interesting to watch the people as they returned to the waiting room. One of the patients was told she did not have to wear her mask any more. She came out celebrating and in a striptease manner tossed the mask to her husband. Another was transplanted this week. He was still tender and in a wheel chair attempting to comprehend the process. Another was in for his annual visit. One man was there with his son-in-law. They came on the bus from Edinburg. The son-in-law offered his kidney to his father-in-law, but a deceased donor came through. (Of course, this man had thoughts about his six children who did not offer) There was more Spanish than English in the clinic. I guess I need to practice my Spanish.

Next Friday it will be time to reload and do it again.

The Social Security Administration called today. I am officially a disabled American. We’ll see what that means when the materials arrive.

Home, Again

2005-09-26T16:32:00.000-07:00

We made it to Shelley’s parent’s house on Wednesday after 14 hours on the road. (There was one hour of waiting for a 10 car pile up to be cleared on Hwy. 90 outside of Rosenberg, so that made the trip a bit longer.) Several of our friends evacuated to the Texas Hill Country. This was not a coordinated plan, but it was nice to have those friends around for Shelley and the boys to commiserate with.

The plan was to return on Tuesday. I called our house on Thursday and Friday and got our answering machine, so I knew we had electricity. Several friends trickled back and gave us reports that our house had no damage. The story that motivated us home was when our friends, whose car broke down while they were getting out of Houston, called to let us know the traffic on I-10 was flowing and the Beltway was moving. That call came at 10:00 on Sunday night and by 10:30 we were packed and on the road.

The trip back from Lockhart was a breeze compared to the journey to Lockhart. The traffic was full and flowed on I-10. The Beltway was empty as there were only five cars on the road. When we got to I-45, no one was on the road. We made it home around 1:30 am. Since we did not take much with us, it did not take too long to unpack.

We were in bed by 2:00 am and then up early to look around and survey the damage. Houses were on slabs. Roofs were in tact. There was no flood water in homes. Neighbors are slowly coming home. There were limbs down all over the neighborhood, but nothing substantial.

In addition to my calls, there were messages on our answering machine from the city telling us there was a mandatory evacuation for our neighborhood. We have a tree that leans in a new direction and some large pine branches that will need to be removed, but all in all, nothing to complain about. Someone came and raked up our limbs. Thank you whoever you are.

As we have watched the news, I have tried to explain to our boys that the destroyed homes they see on TV were on target to be our homes. They cannot fathom that destruction. After going through floods with my parents, I don’t want to deal with that type of destruction. But, there are two more months of hurricane season.

Shelley’s folks were delighted we were there and it was good to see them. Since I have been tethered to Clear Lake since May and then the surgery, we have not made plans to visit with them. This was a survival serendipitous visit. It was also good to enjoy Lockhart BBQ. For the past five years, with a low protein diet, I have not had the pleasure of Lockhart’s fame.

The clinic hunted me down today and labs are scheduled for Thursday, so it will be a day at the hospital to see what is happening with the transplant. We got one report back and the kidney functioning has declined a bit. I’m a little concerned, but it could be that a different lab did the testing. (I’ve had this experience before.) It will be better to have it done back at the hospital and to do the full day of testing to determine the levels. Swelling was not too bad today, but I understand why you should take it easy after surgery!

There will be soooo many stories in the weeks to come; sagas of people taking 24+ hours to get to other places. There is one family I know whose dad is a shuttle commander. Dad went into commander mode. He kept calling his family “a good crew.” They were stuck in Katy for six hours. He attempted to dehydrate the family so they would not have to go to the bathroom; he rationed the supplies and did not allow the AC to be on for the 24 hour trip to the Hill Country. On his way back home, he said he had heart palpitations when he went through Katy. (I think if they have another child, they need to name her Katy!) Weston kept calling their son asking where they were and what he was doing through their trip. All the son could say was, “I’m not drinking water.” Since I am still in medical seclusion, I will miss all these stories. I wish I were able to hear them all in person.

All in all, we are home and thankful. We are trying to get stuff back to usual. School starts again on Thursday, so the boys are enjoying the hurricane holiday.

Road Trip Exodus

2005-09-22T19:58:00.000-07:00

It is difficult to believe that a mere two weeks ago I was in the hospital receiving a kidney transplant. Between the clinic, pain management and current events, I have not found the time to write.

Last Thursday was a full day of testing, drawing blood every couple of hours (without the central line) to negotiate absorption rates of the immune suppression drugs. The Thursday bloodwork was very good. The marker for kidney functioning continues to improve and the transplant team reduced some of the immune suppression drugs. The dietician continues to lecture me about diet, but after living on a VERY restricted diet for the past five years, I’m cutting me some slack for a couple of weeks.

Since all was going so well, the team decided not to do the med levels on Monday and I was given the option of doing bloodwork on Monday in Clear Lake, rather than driving all the way down to the medical center for a stick in the arm. I took the local option. It saved me time and pain as the incision is still making itself known. (Even a visit to Vicadinia did not seem to help.) I do not have Monday’s results.

The plan was for me to spend today (Thursday) in the clinic doing the med levels again. That was until Rita came into our lives.

I spent time with another temperamental woman back in 1983. Her name was Alicia. She came into the Texas coast as a category 3 hurricane. All I remember was I stuck around thinking I could ride it out. The hurricane itself wasn’t so bad by the time it traveled 100 miles inland; lots of tornados, dozens of trees downed, rising water. All that was tolerable, but the weeks without water and electricity (read, no AC) and the bugs were a pain. It was also the week I was heading off to Golden Gate Seminary. (As soon as the airport was open, I took a flight for that adventure, but that is another blog post.)

Having been there, done that hurricane thing before, being immune suppressed and in those post-hurricane conditions seemed like a bad idea. Bugs and no immune system, rising and residual flood water with a healing incision and chest catheter seemed to invite more problems and not able to lift anything seemed to complicate things. Then there were the anticipated storm surge models. Rita was projected to be a category 4 or maybe 5. Our neighborhood has a mandatory evacuation with category 3 hurricanes due to the potential for rising water. Monday we made plans for a possible departure to Lockhart (Shelley’s folks) if Rita were to come around for a visit.

First on the list was to get meds filled. The pharmacy did not have a ready supply, but promised they would be there by Tuesday. Plenty of time to leave.

Clear Creek Schools decided at the close of business on Tuesday to close schools for the rest of the week to allow Clear Lake citizens to evacuate. Meds were not available on Tuesday, but by 10:00 am on Wednesday, they would be there. I cannot lift anything, but spent Tuesday preparing the house, gathering papers (flood insurance policies!) and video taping an inventory of our house.

We put things up and packed on Wednesday morning. At 10:00 am Shelley went to get meds, as promised. However, at 10:00 am, there were no meds available. They would be available at 2:00 pm, so back to putting up more things. At 2:00 pm we discovered the pharmacy LOST my scripts. After connecting the pharmacist with my transplant coordinator, we got partial fills and made plans to get the rest of the meds when we got to Lockhart. Needless to say, when we return I will find a new pharmacy.

We left our drive way about 2:15 pm. The trip to Lockhart usually takes about three hours. At 4:00 am, yes that would be fourteen hours later; we drove up to the front door of Shelley’s parent’s house. This trip was bumper to bumper and 5-20 mph all the way across Houston and central Texas. There was a ribbon of red in front of us and a ribbon of white behind us as far as you could see into the night. The only other light was a full moon. When the moon was low in the sky, it was an eerie red glow that would be consumed by darks clouds every now and then. Foreshadow, anyone? When we got past Columbus, TX, the traffic did pick up to 55 mph. Had we been able to depart at 10:00 am, with meds, it would have been better.

I bear witness that an incision swells and you can feel your heartbeat at every stitch after sitting up for 14 hours. Also, the jury is still out on this one, but I hope the little mask was enough of a barrier against all the people we encountered on the way. So much for medical seclusion and taking it easy for sixteen weeks!

We have discovered several of our friends are here in the hill country, so Skyler may get to have some sort of birthday celebration on Saturday after all. I, on the other hand, am holed up in a back bedroom attempting to comply with the medical orders I was given.

I have been watching the news all day and if I thought last night was bad, it does not even compare to the current departures. I was told by a police officer last night there were approximately 600,000 people departing last night. By tonight, almost 2 million people are estimated to have evacuated Houston – if they can. The broadcasts show traffic bumper to bumper at a stand still, cars out of fuel, tempers rising. Now the point of Rita’s entry has moved up the Texas coast from Galveston to Beaumont and many people are turning back home. However, the cone of plausibility still contains Houston and with a category 5 or 4 hurricane the storm surge will be substantial.

Jerry has evacuated to the Dallas area. He is still tender and unable to pick up anything, so he decided to pack some clothes, papers, lock the door and head north. We did not pack too much with us, a couple changes of clothes and documents. We left pictures. (Sitting here all day, I have thought of pictures and baby books I wished we had brought along with us. They are securely wrapped in water tight containers upstairs. Hopefully the storm surge will be small, the roof will hold and they will make it. I’ll work on a packing list for next time since global warming is not going away.) I guess we are learning how to carry our possessions only in our hands and not our hearts. It makes for a quick escape.

If someone had told me I would be on a massive road trip two weeks after surgery, I would not have believed it. I’m just glad I am two weeks into this experience and able to gingerly make this trip. Last week I would have been toast. The story remains to be told when we will return and then what we will face when we get back. My transplant coordinator called today to let me know that my appointment for Monday is canceled, but I will have to have tests done next Thursday. The big question is where!

Vicadinia

2005-09-13T19:26:00.000-07:00

Yesterday, my doctor wanted to run tests on the levels of the immune suppressants in my system before releasing me. The testing took seven hours. After all the blood draws, it was late afternoon before we could head home and to the drug store.

The blood draws in the hospital were not too painful since they were drawn on a central line. The central line was this tube out my left shoulder. It was a good friend. Once we knew for sure we did not need the central line any more, the nurse cut a couple of stitches from my left shoulder and began to pull all these things out. One was a plastic tubing followed by a very large needle then followed by a longer plastic tube. I quit watching after those three things came out. By then end of the experience, there was a whole array of synthetic things on a tray in front of me. I’m glad I was out when they put the things in.

When I left the hospital, my blood work was at the max end of normal blood work. I have not had that reading in over a decade. I’m back to the hospital on Thursday. I’ll learn Thursday about the med levels and we will start again. They will repeat all the tests that were done on Monday, but without my friend, the central line.

One of Monday’s stops was the drug store. We dropped off a half a dozen prescriptions. I began counting and organizing the meds into pillboxes when we got the meds home last night. There are many pills to consume at various hours of the day and I have set alarms to remind me it is time to take something. I now rival my mother and mother-in-law in the number of medications per day as mine fill an entire nightstand drawer.

Today has been a day of vicadin as I feel the incision pain. The foley catheter was removed yesterday morning, a breath taking experience –literally. I suppose the pain of the catheter masked the pain of the incision, but not today. The incision has made itself known. (For the record, I’ll take the incision pain.) The painkiller has kept the edge off and I am calling “Vicadinia” home for a while.

I discovered today they cut a couple of nerves when they did the incision. I am numb on my right thigh, hip and areas around the incision. I have a clumsy, hobbling gait now, but I’ll take it since I did not have to canter to the dialysis clinic today.

Hospital Update

2005-09-11T21:59:00.000-07:00

Progress is determined in many ways, but lately my delineation has been as tubes and other restrictors are removed from my body. I have gone from 13 “things” inserted in me and on me to four. Hopefully, one more will be removed tonight around mid-night. My level of pain will be greatly reduced when they remove one of the tubes, the Foley catheter. (If you are unfamiliar with this devise, you can Google for it. I have come to the conclusion this device was developed in the Montrose area of Houston, probably at that Mary’s biker bar across from Half-price books at Westheimer and Montrose. I picture it as the result of some late night dare. I thought I knew pain when I sneezed with fresh stitches. I knew severe pain tonight when the nurse “straightened” the bed sheets with the catheter attached to the sheets.)

Last night around 10:00, I was moved from Intermediate care to “the floor.” I was in Renal ICU shortly after the surgery, then in Intermediate care for four days and now on the Renal Transplant floor. The move was made because things are getting better. The late at night move was because the staff was preparing for two transplants.

From the Intermediate care room, I had a view of the life flight helipad landing approach. Saturday there were several early morning red helicopters and then around late afternoon there were more red helicopters and then a couple of yellow helicopters. I learned the yellow helicopters were for donated organs.

Those two yellow helicopters brought in a couple of kidneys which brought in four possible recipients. The four were quarantined and tested to see who made the best matches. There was a delay as they were making final selections. One of the patients, who got a kidney the day before me, began to bleed. She was rushed into the operating room ahead of the other two transplant recipients. The sad story is, she lost her donated kidney and will be returning to dialysis. But, two more folks got transplanted last night. Their experience is a stark contrast to mine. I can only imagine the emotion of preparing and the elation of knowing they were about to receive a get-out-of-dialysis-soon card.

Yesterday was a day for learning meds and checking levels. Med requirements have been increased and now that I am on the floor, I and others are supposed to wear masks for protection. Tomorrow will be another day for testing meds. I am not sure at what hour I will be able to head home, but Monday is supposed to be the day to go home.

Jerry is doing very well. He is home, sore, and getting better.

My bloodwork reports my kidney functioning is almost that of a person without ESRD. I am curious what tomorrow’s test will hold. Every day has been better than the day before with kidney levels, but the side effects of the meds are beginning to kick in. The nurses will wake me up tonight around 3:00 am to take more blood so the test results will be back by the time the doctors assemble for their 7:30 rounds.

Major Owie!

2005-09-08T21:41:00.000-07:00

It is the first day on a new lease on life. But it sure is a major owie! I have yet to see the incision. Mainly because I am sill doubled over in pain. The morphine pump has been a good friend in these hours.

Yesterday started with an early drive to Memorial Hermann. Randy Targhetta drove Shelley and me to the hospital at 5:00 am. Jerry and his mom and dad were in the waiting room when we arrived around 6:00 am. I had never met Mr. and Mrs. Wooley. I expressed to them how grateful I was for what Jerry had offered to do.

We signed in and around 6:30, we were taken to the pre-op area where we were issued our lovely hospital gowns, started IVs and took one last round of blood tests. Jerry’s room was across from mine and we could watch each other as the nurses began to prep us.

There was a while to wait, so Shelley, Randy and I went across the hall to sit with Jerry and his parents. While we were there, I reminded him that if there were any second thoughts, there would be no hard feelings and now is the time to voice them! Jerry assured me there were no second thoughts.

The anesthesiologist showed up to explain what was about to happen next. Then he gave Jerry a shot, me a pill and the surgeries were about to start. Around 7:30 am Jerry was rolled off to the operating room to begin the first surgery.

My parents and boys arrived around 8:00 am. At 9:30 the anesthesiologists came to report that Jerry’s surgery was underway and it was time for me to have a little shot.

That was the last coherent thought I remember until waking up to have a renal scan. The renal scan showed that the kidney was working very well. My initial lab work shows an incredible improvement. The uremic taste that has haunted me for the past year is gone.

Last night was a short night of nurses picking and probing. It continued on today. I did not know pain until I sneezed today.

Jerry was up and walking. I hope to do so tomorrow!

The Day

2005-09-07T02:56:00.000-07:00

Well, it is about 5:00 am and we are heading off to Memorial Hermann. Check-in is at 6:00 am and surgery starts around 8:00 am. Surgery will be about 6 hours. So this will be a long day.

When I can post again, I'll give an update.

Donor #9

2005-09-04T21:22:00.000-07:00

Many people have been asking about Donor #9. Donor #9 came over tonight to visit. I thought you would like to see his picture.

Tonight was a good time to hear his side of the story and compare notes. The coordinator does not “share” information. It is up to the donor and the recipient to get the story from each other. He has had a full summer and this has been the only night before surgery we could get together. As we talked, I learned some things that my transplant coordinator had kept from me!

He started this journey on June 7, the day Donor #1 and I were to have had surgery. He was at the Union Baptist Association (UBA) office and heard what had happened. After doing some research of his own about kidney transplants, he called me and then called the transplant coordinator. On June 17, he had moved to stage one testing.

Donor #8 failed stage 3 on July 7. (A bonus to all this is that many of my friends are very aware of their health conditions.) Donor #9 and I were tested for the initial cross-match on July 8. The first cross-match came back negative and that was the green light to move to the next phase. It required many more vials of blood and a complete body scan and physical.

Those test results provided information for the medical review board. The medical review board made their decision after a couple of weeks and then it was time to schedule surgery.

Since two surgical teams are needed for this transplant, they had to find a date where two operating rooms were available when the two surgical teams were going to be in town. Once the date was set, it was time for the final cross-match to be performed as a double check. It came back negative and we are moving forward to September 7.

OK, I know if I only kept the masked picture I would receive untold negative email. To prevent that from happening and since I have his permission, here is Donor #9 with out the mask.

Donor #9 is Jerry Wooley. He is one of the pastors at Park Place Baptist Church in Houston. He and I have known each other for over a decade of working together through UBA projects. He told his church this morning, so the cat is officially out of the bag. This will be his first time to have surgery and since I cannot have flowers in my room, feel free to send him lots of best wishes.

I cannot say enough thanks to Jerry. Other than Shelley saying “yes” she would marry me (and actually showing up at the wedding to go through with the deal), this is the most profound gift anyone has ever offered to me. Jerry is offering a functioning organ from his body to replace the organs that have failed in my body. Jerry will save my life on Wednesday.

We have decided we’ll get together September 7, 2006. He is deciding where we eat next year since all I could get him this year is a hospital meal.

The Essential Food Groups

2005-09-02T20:13:00.000-07:00

Word came back that the final cross-match was negative and so now it is time to prepare for Wednesday’s surgery. Part of the preparation is to eradicate an immune system so I will not immediately reject the donated kidney.

Pictured here is my daily portion, for now. The four big ones on the bottom and the four rows on the right are my new lifelong friends. These drugs will be regulated once I have the transplant so the kidney can live (and I can live), but they will be necessary for the rest of my life. That is a staggering thought.

The first handful was rather daunting. It is a counterintuitive act to swallow so many pills – especially knowing these pills are not designed to heal you of anything.

This week has not left much time to write. I have been handing off work at the office and going to the hospital every other day. Now that the drugs have started, I am sequestered. I hope there will be time to capture some thoughts.

Longanimity

2005-08-25T00:10:00.000-07:00

The picture you are looking at is ten stitches in my forearm. I had a little surgery a week ago Friday. There was a “questionable” blemish on my forearm. After several minutes of cutting a divot in my arm and ten stitches, it was gone and sent to pathology.

We found out last week it is benign. They did not tell me what it was and frankly, I did not care after I heard the word “benign.” The word malignant would have set off several alarms for doctors suggesting I start an immune suppressant protocol. Those alarms would have shut down the transplant process for a couple of years. Not a pretty scenario.

This was one of the two remaining hurdles to September 7. The next test is the final cross match with the donor. It is the last test to make sure the donor and I are compatible. The results of the cross match return September 6.

Next week is full of appointments to prepare for September 7. After so many starts and stops, it is hard to believe this may actually come to pass.

The Subpoena

2005-08-16T11:13:00.000-07:00

I was subpoenaed yesterday. It was not for a jury, but to be a witness. I was in a multi car wreck last April. I was at the intersection of El Dorado and Highway 3 waiting in the turn lane to turn south on Highway 3 when a convertible (top down) sports car came flying over the median on El Dorado and impaled itself in the side of my van.

Fortunately, the speeding schlemiel driving the sports car was wearing his seatbelt. If he had not been wearing his seatbelt, he would have been propelled like a javelin through the back windows of my van. And fortunately, he hit right behind the driver side door. If his trajectory had been one more degree west, I don’t think I’d be concerned about kidney problems anymore. I don’t think I’d have a care in the world, or at least this world.

The impact of his hit sent me to several physical therapy appointments and pushed my van into the next lane causing me to hit another car. All told, this was a four car collision and sporty got the ticket. (The funny part about the ticketing experience was the officer dispatched to the scene. The officer was a woman, nothing against women. She took everyone’s license and was trying to get stories and a crowd was beginning to gather. She was rather nervous, short tempered was having trouble getting the story and kept calling for back up. When some backup showed up, she announced she had to leave to go to the BATHROOM. So, she hopped in her squad car, sped out of the parking lot WITH our licenses leaving this other officer to figure out what to do with a parking lot with four wrecked cars, the usual horde of wrecker vultures, and a growing crowd. Only I have these types of experiences.)

The collision totaled our van. We were very sad to know our van had been totaled. In the previous week we made a decision to do extensive repairs and to keep the van rather than start another car payment. Besides, it was a great van – even if it was over a decade old. It had years of NASA All-Star stickers, it could haul all the baseball and other sports equipment which is a necessary part of our suburban life, it had a fairly new CLIS “honor student” sticker, it was the van in which we brought the dog home when we first got her, it was a great van for our vagabond traveling since we don’t really know how to pack “light.” When the van was taken from us, we did not know for sure if it would be totaled or not, so we never really got to say goodbye.

We had a rental from speedy’s insurance company for the deliberation period and as that took a while, it was looking like Donor #1 was going to make. The transplant team told me once I have a transplant I cannot drive for three months. (I think they are cautious.) That was when my dad stepped in and offered me his truck. The offer was for a couple weeks back in May since the surgery was going to be in early June. Recovery was going to be the summer and then by the fall I could drive again and we would have had time to make a decision on what to do.

As the testing of donors has strung out, the couple of weeks have become a couple of months. Other than the gas costs, I really like his truck. It has personality from the years of driving to IAH and the accidents – emphasis on the dents. The boys like it because it has the smell of Old Spice and it reminds them of their Papa.

Back to the subpoena. I have been ordered to appear on September 6 at the courthouse on Lubbock downtown. I don’t know why I have been summoned. I would really like to appear and get this whole wreck thing behind me. But I called the courthouse today to let them know I will not be able to make it on September 6.

I found out I have another “subpoena” of sorts for my attention. If all goes as planned, September 6 will be my last day to do dialysis. Word is back on Donor #9. He has passed all the tests and we have set a transplant date for September 7. That is a writ I’d rather honor. I am cautiously optimistic as I have been here before and there are two other tests to pass, but it is close. Hopefully by Christmas, a gently used kidney will be fully functional and I can get back in the drivers’ seat.

Where Were You When the Lights Went Out?

2005-08-09T17:46:00.000-07:00

It was an interesting day in the clinic. I was in the middle bay and there was a major rustling behind me. You cannot really see behind you when you are tethered to the machine, but from the periphery I could sense some action behind me.

Once the initial commotion calmed a bit, EMS workers bolted through the front door and rushed in. There were some radio blurts and then a stretcher appeared and one of the patients was whisked away. Speculation on the floor was one of the comrades had a stroke.

The stroke event led to reminiscences of when other medical emergencies happened on the ward. There was a tale of how someone had a heart attack. The person telling the story witnessed the staff going into action and said the staff was most impressive at that time. This led to one of the nurses relating a story of another clinic when a patient did something to their needle at the access point and bled to death in four minutes. These stories make you feel warm all over.

Things settled down after the EMS folks departed until the storm came. There are huge windows on one wall of the clinic. We watched a weather transformation this afternoon. The sky went from bright and sunny to dark and gray. Then the sky turned black and the rain started. The rain came down in impressive sheets and filled the street, but the lightening was more spectacular.

It was spectacular until the lights went out. I don’t mind the lights going out, except it usually means the electricity is off. I don’t mind electricity going off except when about a pint or two of my blood is outside my body dependent upon a machine to pump it back in. Yep. The machines stopped. The staff has trained us to manually pump our blood back in our bodies. However, when they trained us, the machines were within reach and the lights were on and you could see what you were doing.

This afternoon you could not see a thing when the lights went out and the tubes and blood pressure cuffs curtailed the ability to reach. I would have been in big trouble if it had been up to me alone. (But, I’m trained.) Fortunately, there were only four of us left in the clinic hooked up to the machines. I have never seen nurses bolt from behind a desk, but we have some quick ones when they have to be! The electricity was off for a little while and once the machines recycled and the staff punched the right sequence on the front panel the blood was flowing again. With all the heparin injected in you I don’t think the blood would have clotted (I mean if I get a paper cut, I get concerned because it just keeps flowing. Not to mention when I nick myself shaving.), but having a machine stop pumping was a first.

I started thinking after the pump got going again. At home when there is lightening and thunder, I usually turn off my computer and other electrical devices. I wondered if it was a wise idea to be attached to a machine during an electrical storm. I was about to voice that question to the charge nurse when all of a sudden we had a repeat. There was a huge clap of thunder, a brilliant blast of light and the electricity went off again.

I guess I am telepathic. This time the charge nurse shouted to the techs to remove every one from the machines and call it a day. I did not get my full time on the machine, but given the weather and the possibilities of the electrical chair, I’m not going to complain.

Twenty Years Ago

2005-08-06T18:41:00.000-07:00

Twenty years ago today, I was in Hiroshima at a peace gathering. It was the 40th Anniversary of the bombing. I was traveling the rails of the Shinkansen (Japanese bullet train) roaming around Japan the summer of 1985.

I made it to the Peace Park and tried to find a place to stand. After living in Asia, I was accustomed to massive crowds, but this one was packed. I recall it was a rainy, drizzly day. There was a bell tolling. I did not understand a word the speakers spoke. There was a heavy mood. The gray sky and the bell’s toll carried the mood.

I found a spot near the Peace Fountain. A huge display of origami cranes had been created by children from across Japan and placed between the Peace Fountain and the Children’s Monument. It was the vow for peace. Paper lanterns were around the park and in the water to commemorate the loss of life.

In the park were museums with pictures and artifacts. It was incredible to see the devastation. When the bomb hit, there was vaporization. The Hiroshima Prefectural Commercial Exhibition Hall (or the A-Bomb Dome) was the eerie skeleton in the park.

In one of the exhibits I saw a picture from the hills above Hiroshima after the blast. It was as if the city was in a basin that was crushed.

After spending the day in the park, I took a ferry out to Miyajima and maneuvered my way up a hill. Somehow, I got to the spot where the picture of devastation had been taken forty years earlier and was able to look out over the city. The only obvious remnant of the peril to the city was the park. The city had built back and was prospering again.

Somewhere I have a journal from that trip. I remember thinking about war. I had not experienced war. I was a young child during Vietnam. My cousins enlisted in the armed services during times of peace. They told stories of serving our country more as a travel brochure than protection against aggression.

After spending the day viewing the exhibits of total destruction, I felt responsible for the destruction. I also remember trying to balance that emotion with my “kibun” for my Korean friends who spoke about the atrocities of the Japanese when Japan occupied Korea. I also thought it was interesting there was no mention of Pearl Harbor.

Many Post-Modern philosophers point to this day in 1945 as the end of the Enlightenment. All of our efforts at enlightenment culminated in one major form of brilliance over a city and at the end of the morning all that knowledge consummated a chthonic chaos and absolute destruction.

I remember thinking wars of destruction were done and future battles would be economic. The Walkman was beginning to be very popular. I remember thinking that Japan was making another global invasion with the power of Sony.

It is amazing what twenty more years has brought about. I remember reading Frances Fukuyama in the early 1990s and his statement about the End of History. He was reflecting on Hegel that the evolution of human society would culminate when mankind achieved a form of society that satisfied its deepest and fundamental longings. I could buy into that idea. Maybe we had learned some lessons and development and progress would bring the end of conflict. Little did we know what the longings of fundamentalists would bring to the globe within a decade.

Thinking today, I find it amazing that I can say twenty years ago and it has me wondering about twenty years from now.

Not much...

2005-08-05T22:22:00.000-07:00

Not much time to write this week and not much to write because not much has happened this week. Still waiting on results from Donor #9.

I am still spared the 4.5-hour routine. Why? I don’t know. I asked the nurses and they don’t have an answer from the doctors. Blood work was done last treatment, so that may tell the tale.

This week has been puke week. Three of the four people across from me were very sick on Tuesday and then two of the four were sick on Thursday. I am a sympathetic puker. If someone is wrenching his or her guts out in my presence, it draws me into the same behavior. I had trouble with the boys when they were sick. They would be sick and then I would be right behind them. Fortunately, I did not succumb this past week.

Sometimes people become ill because the blood pressure drops too far. Since these folks were sick late in their treatment, it was most likely the bp issue. There were several from the early treatment schedule still in their chairs waiting to walk. If the bp drops too far, they don’t let you leave. Besides, you cannot get too far. One morning I arrived to find someone fainted outside. I got one of the techs to help me bring him back in.

There is a new tech finishing his training this week and he is learning. I watched him stick my young friend. The first stick was painful and the second stick was torturous. I have never seen my friend pull out of the chair before, but apparently the needle went through some scar tissue that required some “encouragement” before it would puncture the skin. Instead of the usual two sticks, he got three on Thursday.

This tech was working my bay and he is learning you have to watch the patients. I think that is how so many became ill. He is learning for what to watch on the patients. In my chair, I am teaching him to read the orders. He pulled too much fluid off me and I was cramping. When I questioned why I was cramping and reviewed the treatment for the day, he had set me to pull too much. He thought my treatment was like the other patients’ rather than knowing I pull easy and should be set different from the usual protocols. It is tough for others to learn at my and my friends’ expense. He offered to cannulate my veins rather than prepare the catheter. That was a lesson I was not willing to take.

Waiting

2005-07-28T22:09:00.000-07:00

Another day and I have been spared the 4.5 hour ritual. I’m not sure what that means. Labs were done last week, but I have not seen the results. I will confess. I did better on the diet knowing labs were going to be done.

There are a couple of things about my life good friends know. One, I am not a morning person. I willingly get up early once a year for Easter, but the other early morning meetings are under duress. (Now you know what a commitment it was for me to be part of the Bay Area Men’s Fraternity.)

Two, I am an avowed chocoholic. Bluebell Dutch Chocolate is a gift from God. However, with this disease chocolate is a no-no and on the do not eat list. Chocolate ice cream has a couple of problems for folks like me. Dairy products raise the level of calcium and phosphorus and chocolate raises the level of potassium and phosphorus. Too much calcium and the veins and organs begin to store it. Calcification of organs and veins is not a good thing. The phosphorus causes other problems and dialysis does not pull phosphorus as well. The symptoms are red eyes. I look like I am in spring time all the time. A “fix” for the phosphorus is to take a binder. The binders are calcium, but you cannot take too many because of the issues previously mentioned.

Then there is the potassium. Too much potassium and the heart has problems. Problems like not beating. I have always joked I wanted to go with chocolate on my breath. Little did I know that could be a reality.

Anyway, back to the confession. Clearance is the formula Kt/V. V is constant and t (time) is the variable. So when K is not sufficient the time is increased. But another variable is diet. It could be that small amount of chocolate ice cream I was eating every night could have lingered in the blood causing a residual and poor clearance. I’m back on the wagon, but if you catch me at the ice cream area of the store or starring down a bag of snickers after a long day, just know those items are no longer comfort foods for me like they have been in previous days, BD (before dialysis). They could be the door way to the great beyond.

A couple of the techs pulled their stools up next to me today and we just talked for a while. These guys were just asking questions and talking about life. For some reason there are several younger guys in their mid-20’s coming into my life. I think a new season is about to come forth.

Since I don’t get stuck, I asked one of the techs to bring me one of the needles that are used on the graft and fistula patients. The needle is huge. It is a 17 gauge needle. You could drive a truck through the thing. Well, maybe not a truck, but looking at it up close helped me understand why these guys have to hold before they clot.

When the transplant comes about, I plan to take this needle and frame it with the phrase “Take Your Meds.” It will be a reminder (a stern, German kind of reminder) to be diligent in taking the meds. I think it could become easy to put this chapter of my life behind me and purge it from the hard drive. I really want to, trust me this has not been all rosy, but in spite of it there are some lessons to remember. I don’t have them all, but there are some things that would be easy to forget, some of the things that have become common and accepted in the ritual, things that could fall to the background that are important to remember as they have shaped me in these weeks.

I’ve thought of these weeks as “waiting” for the transplant rather than “being” weeks of treatment. As the days of waiting have become weeks and now months, it is difficult to think of it as waiting any more.

Donor #9 went for more tests today. Results will be in next week and pending these results we will know if more tests are to be done. There are two of us waiting and being in the moment.

Biomimicry

2005-07-24T21:41:00.000-07:00

Yesterday was another Saturday at the clinic. Saturdays are the tough days. This is the time I feel tethered. The youngest one has been in The Battle At the Beach baseball tournament in Galveston this weekend. (His team won the tournament. I made the Friday night game and was a little tied up on Saturday. I tried one game Sunday, but the heat wore me out. I had to leave.) Back to being tethered. Those tubes which take my blood to and from the machine don’t stretch to Galveston, much less the Texas Hill Country, Colorado or the list of other places I’d rather be. This is when I loathe this disease.

I looked at my PDA on Saturday and noticed my calendar did not include the appointment at the clinic. When I checked it out, I had set the dialysis appointment to end on July 22, thinking there would be a transplant by that time. I missed that one. I have since reset the calendar with no end date set.

Word came back from the transplant team about Donor #9. He and I had a negative cross match. We are now in stage three. He is back from vacation and has started stage three testing. He has more tests next week. We are at the point where Donor #8 failed. I have learned not to sit on the edge of my seat with the testing of donors, but this seems cautiously hopeful.

Since this thing is not going away, I have increased my hunt for alternative treatment research. And as long as we are cautiously hopeful, there are some potential breakthroughs on the horizon in the field of biomimicry that could be helpful for folks like me. Biomimicry has been around a while as many devices we employ every day resemble the human and nature's form, but now scientists are attempting to mimic the biochemistry of nature.

Biophiltre, a Burlingame, California company, is working towards the development of a “renosphere.” This will be a nano sized filtration device modeled on the filtering function of cell membranes. The first application will be tiny “renospheres” that, when injected into the bloodstream, could filter waste, potentially eliminating the need for artificial kidney dialysis.

My head goes lots of places with this idea. There is the hopeful thought of WOW! And then the flip thought of how to program and monitor differentiation of task at the nano level. What will prevent these devices from filtering out necessary elements of the blood? Or coagulating platelets? But to be free from the tether, without immune suppressants, that is a great thought.

Misc

2005-07-19T22:37:00.000-07:00

Today was fairly uneventful. The docs showed up and ordered some more blood work. I must admit, I appreciate taking blood with the catheter. There is not a stick, just a draw. I get a little nervous when I see how fast the vials fill up. It is like a fast fill spigot. I don’t care much for watching blood and it usually causes me to faint. (I think I am overcoming that one.) Watching this has brought out some paranoia. It’s triggered as I think how fast I would be drained if one of these lines were to ever get cut or the cap were to come off.

I told the nurse about my little paranoid thought. I was looking for some reassurance from her that I should not worry about it. All she did was confirm my concern with a story about how someone almost bled to death in their sleep because their line got a nick in it. I had not thought about the “while asleep” part until she told the story. She showed me how to clamp the line, just in case.

Her story begat other ill-fated catheter stories from the rest of the medical personnel in the room. I heard about catheters that fell out while patients were sleeping. I heard about how one of the doctors yanked one out while a patient was sitting in the dialysis chair. They are very quick to tell stories about infections with these things. Once you get an infection, you’re in the hospital for a while. So far, two of the catheter patients on my shift have been sent to the hospital in my short tenure in the clinic because of infection. Both were in the hospital for over a week for high powered antibiotics. I was reassured alright, reassured to be very cautious.

I wrote earlier, the catheter makes my experience a more pleasant experience. The patients with fistulas and grafts get stuck. For me, right now, it is a couple of twists, turns, a double saline test, a shot of heparin and I’m ready to go.

It is usually after a tale of infection that the medical folks look at me and ask when I am going to get a fistula. And I repeat for them, if we get to the end of the donors with no transplant, I’ll make plans for a more permanent access. Until then, I’ll be satisfied with my no stick catheter access.

Spending Saturday

2005-07-17T21:09:00.000-07:00

Saturday was a better day than I thought it was going to be. “We” did not start the 4.5 hour session. “We” increased the size of the artificial kidney in an attempt to increase clearance. (I have a hunch it may be a both/and, so I am not out of the woods on the increase of time.) I could tell a difference at the end of the session. I had to stick around the clinic for a while to get my bearings. I was the second to the last patient to finish so there was one other patient in the clinic while I gathered my composure. He was trying to clot before he departed. I was trying to stand and walk in a straight line.

I spent Saturday with guests for almost the entire time. One friend working in Algeria emailed several weeks ago. He was coming home and wanted to come by and spend some time. It was fun to talk and catch up. He has been gone since January. He only gets a couple of weeks off every two months; I hope his wife knows I appreciated the sacrifice!

Another friend came by to visit. He returned from work in Asia and Europe. He added to the travel conversation. I don’t think I’ll be doing as much travel this summer, but it was fun to recall former trips. (A trip we were supposed to make this summer was to Aunt Vera’s birthday. I know you are not supposed to speak or write a lady’s age, but let’s just say this one was a biggie as she became an octogenarian and the family was going to meet in Iowa on the Mackeprang farm.) If things get dull in the clinic, I’ll begin to write and post old travel adventures.

A friend at church told me about a kidney donation article in Parade Magazine today. A story was written in December. The recent story was released this weekend and it was a follow up to the December article. In the follow up article, the author’s friend had a transplant on May 26 and is doing well. May 26 is not too far off from June 6. It got me thinking that if things had gone through on June 6, I would be on the other side of a lot of things by this date.

It was good to read this article to balance what I read in the New York Times this week (July 10, Will Any Organ Do?) about organ donation. This article told the story of four organ recipients in Dallas. In the story, the deceased donor died due to symptoms that the doctors thought were caused by a cocaine overdose. They harvested the organs and did transplants. After several days the recipients became ill and died of rabies. On further investigation it was decided that the donor did not die of a drug overdose, but died of rabies from a bat bite. When my mom had her transplant she was given a kidney that had a virus she did not have. (I’ve checked and I have had the virus, so that should not be a problem with me.) But rabies?

When the list was not as large, most of the donors died from head trauma. This meant deceased donors were healthy, just unfortunate. The list has experienced significant growth in recent years. For every person who is removed from the list, two more people are added to the list. Seventeen people die every day waiting for a transplant. As those stats add up, head traumas are not keeping pace. (Thanks seat belt and helmet laws.) As the list has grown, donors are received from other trauma. Doctors have allowed some unusual transplants in extreme circumstances. As those donations have been successful, they get talked about at conventions and written up in journals. Standards are lightened to help reduce the list. The process becomes a drifting goals archetype.

The Parade article is about living donation, a friend reaching out to help a friend. Fortunately, that type of donation is increasing. It is what I hope will be my transplant experience. The living donor from the Parade article stated this quote by St. Augustine motivated him to donate, “Since you cannot do good to all, you are to pay special attention to those who, by accidents of time, or place, or circumstances, are brought into closer connection with you.” I was thinking about the US population. If one percent of the population were to consider altruistic donation, that would provide good odds for folks on the list.

When You’re Having Fun

2005-07-14T14:31:00.000-07:00

The monthly report card of treatment arrived. Apparently what we have been doing is not sufficient. I heard the lovely phrase, “We are going to have to go to four and a half hours for our treatment time.” When you’re having fun, why cut it short? And what do they mean when they say "we"? Last I looked, there was only "me" and not a "we" in the chair. I'm not sure when the extended time starts.

I know it is only thirty more minutes a treatment, but it sums to another hour and a half per week hooked up. After a certain point, Tuesday, Thursday, Saturdays are lost days for me so it is not like I’m missing out on anything, but four hours of immobility has to be some kind of human threshold. Then again, I was seated in the middle of coach on a 747 one time on a flight from San Francisco to Tokyo. It was an experience of being in the fetal position until you could not stand it any longer. When the stewardess said we could deboard the plane, I looked at her like she was a midwife. (No, Pamm, she did not swat me on the behind as I went by.)

I don’t think I have Adult ADD, but being still for four hours is a task I do not enjoy. I get restless (and cold) around hour three. I have developed a mental routine that helps me, but that can only go so far. I perfected this technique my first month in Korea. I was part of a Korean church and believe it or not, they only spoke Korean in the worship service. Until I gained some ability in the language, it reminded me of when I went to a charismatic church that spoke in tongues all the time with no interpreter. (The music was meaningful.) The Korean worship experience is more elastic than the typical American service. I remember one day the service had been going for about an hour and one of the deaconesses came to pray for the congregation. She prayed for over an hour. We were standing during the prayer and she would say things that would resonate with the congregation. I had no clue what she prayed for, but many in the congregation were in agreement with her and would respond in unison with a loud “Amen!” Every time I heard “Amen!” I would attempt to sit thinking the prayer was over. After the sixth attempt to sit, I just closed my eyes tighter and waited while I went to work on my endurance technique. Eventually, one of my Korean friends tugged on my sleeve and I opened my eyes. I am not sure how long I was left standing, but at sometime, she had stopped praying and the rest of the congregation had already been seated. The rest of the service continued on for another three hours. I have endurance when I have to use it.

The other thing it is another hour and a half. I wasted more time BD (before dialysis), but I have gained a new appreciation for my time since starting this experience. I don’t know if it is the regimented schedule or a new appreciation for being unfettered. I guess things could be worse and at least I understand most of the language.

Juxtaposition

2005-07-12T19:50:00.000-07:00

Last weekend, Shelley and the boys were in Austin for one of the Clear Lake Storm’s baseball tournaments. This left me home alone for the weekend. Since I was alone, I thought I’d drive to and from the clinic - as an experiment. The techs at the clinic are getting the machines calibrated to my body, so the pulling of fluid is tempered most treatments. I don’t feel great after treatments, but I had enough stamina to make it home without incident. I hope that things will continue to get better.

Since I was alone for the weekend, I made some plans of my own. I arranged to have dinner with one of the other patients, the young man who is the veteran of ESRD. I will not “out” him by name, but you need to know he is half my age and has been dealing with this for about a decade, almost half his life. He went through his teens on dialysis and now he is in the midst of young adulthood. Turns out, he went to school with some of the students in my youth group before he became so sick and his youth was interrupted. He has this annoying habit of calling me “Mr. Waldo” and we will have to work on that.

Dinner was good, but the conversation was better. We shared clinic stories and compared notes on our treatment plans, talked about the doctors, nurses and techs as we ate dinner. He told the story of how his kidneys failed when he was in his early teens. The saga continued with issues of diagnosis and numerous stays in the hospital. After a couple of years of pediatric dialysis, his mother donated a kidney to him. There were problems from the beginning. He was back in the hospital days after the transplant. He spent his adolescence in the hospital. He almost died several times from complications. The kidney failed after a couple of years and then back on dialysis.

His experience of dialysis is different from my experience. For me, the nurse hooks up the tubes hanging out of my chest to the machinery. He has a graft. A graft is a plastic tube implanted subcutaneous in the forearm. The tube is connected to an artery and a vein. He gets stuck twice every treatment with large needles in this plastic tube. One needle hits near an artery for pulling the blood out and the other is hit near a vein for returning. I watch him grimace and flinch (twice) every treatment as the techs cannulate him. I also watch him “hold” at the end of the treatment for about 20 minutes until his punctures stop bleeding. The people with fistulas and grafts cannot leave the clinic bleeding. They have to clot before they go.

He is a likeable guy and as he talked, my admiration for him grew. I admired his courage and attitude. He spoke honestly about the journey thus far, close calls and surprises. This guy half my age served up stories of life trauma between the dinner courses. He has presented nothing but a heart of gratitude for what he has been through and what he goes through. For such a young man, he has already lived several lifetimes, but he knows his best days are ahead of him and he longs to embrace those days.

He is too fluent in the language of suffering. He has suffered and the suffering has brought him a deep strength. I don’t’ think he knows it, yet, but that strength is present with him. It was a cool breeze in this summer heat. It was a great dinner. Optimistic. Hopeful.

At 10:00 pm, the night is young for a 20-something, but for us middle-age guys, 10:00 pm looks like bedtime. We parted ways at dessert. He left to go to his next thing and I went home.

When I got home, I logged on to my computer to check on other friends. I am part of a couple of online ESRD learning and support groups. One of the members in one of the forums sent a message out to the group.

The post was sobering. She has given up. She is tired and sick. Her experience of dialysis is not getting better. Her treatments are not making her better. There is not a transplant in sight. She is continually tired. After every treatment, she is sick, very sick. The experience is so bad, she has decided to end her treatment and wait for the inevitable.

Others on the forum chimed in about what’s ahead. There was no condemnation, no attempt to talk her out of her decision, no guilt trips. Two other forum members made the same decision in years past. There were words about what to expect based on the past experiences. There were words about how to prepare.

I sat in my chair stunned as I read the posts. Novice and naïve responses were all I could think to offer. I did not post. The conversation took my head to other places. I get tired. You never know how tired you can get.

A comment thrown out on the forum was, “dialysis is just life support.” When I think of that comment, I think Terri Schiavo and best days in the past. I guess that is where my online friend lives. But, life support with the best days ahead is like my young friend from dinner. It keeps things going until the next hopeful breakthrough.

Another Heavy Hearted Friend

2005-07-09T09:55:00.000-07:00

When the transplant attempt failed on June 3, I was listed on the national transplant list and the search for another live donor started again. So far, there have been no calls for a cadaveric kidney, but on the live donor front there has been activity. I mentioned in the last post how Memorial Hermann hospital has four stages to their process for live donations. The first stage is for the potential donor to call the transplant coordinator and arrange an appointment.

I’ve been told the profile they are looking for is someone in excellent health, around my age (preferably younger, but age 60 is the cap), O+ blood type (but, Rh factor does not matter) and about my size. Stage one assesses the potential donor with those factors as well as starts the basic lab work to explore the question of health.

When potential donors ask about donating, I give them the coordinator’s phone number and leave it in the hands of the potential donor. It is a huge decision for a potential donor to contemplate the idea of taking time out of their life to have a surgery that will remove a healthy organ from their body and offer that organ to another person with the hope it will help the other person. That is a very profound and personal decision. Each person has to come to terms with it on their own. As grateful as I am, I don’t want to sway that decision. After the soul searching, the potential donor has to make the first contact. From there, the coordinator does her job. If potential donors make it through the first phone call (I think part of the coordinator’s job is to scare the bejeebers out of people) they make an appointment to come to the clinic.

The transplant coordinator likes for potential donors to come to the clinic for the initial interview. The Transplant Clinic is the basement of the hospital. Navigating the labyrinths of the Medical Center can be intimidating, but when a potential donor puts his/her hand on the door of the transplant clinic, I’m sure the intimidation factor increases. (I know blood pressure increases.) Touching the door takes the experience beyond a conversation with me or a phone conversation with some unknown transplant coordinator.

Before June 3, the plan was to work with one donor at a time, single file, through all the stages until there was a failure. After June 3, the coordinator allowed those interested to call her and begin the process and finish stage one. It has been like a swarm. She tells me she is amazed at the number of potential donors and this is very unusual. (After the first week, she called and asked, “Who are you?”) Not everyone makes it past the phone call. Also, I have explained the criteria to some who have shown interest and some elements of the profile have eliminated some as potential donors.

As of last week, here has been the work since June 3 (There will be some modifications as you read this post):
Donor #1 failed at stage 4
Donor #2 wrong blood type
Donor #3 age
Donor #4 age
Donor #5 hep
Donor #6 wrong blood type
Donor #7 wrong blood type/hepB
Donor #8 in process
Donor #9 in process
Donor #10 in process
Donor #11 in process
Donor #12 in process
Donor #13 in process
(I look at this list and I am touched and overwhelmed.)

Back to last week. The coordinator called and said Donor #8 looked good to go to the next stage. Stage two is additional blood work for the donor and a cross-match test. In the cross-match, the donor gives a vial of blood and I give a vial of blood and our blood is commingled to see if it is compatible and if there are any antigen markers that match. It is not imperative for antigen markers to match. If the cross-match comes back as negative, that is a good thing and the donor moves to stage three. The clinic will only do one person at a time on the cross-match. I asked why we cannot do all the donors for the cross-match. My coordinator told me the cost for a cross-match is around $5000 and insurance makes the call.

So, last week, Donor #8 and I took an early morning trip to the hospital for a cross-match. The cross-match takes about a week to return. Ours came back negative. Donor #8 then started on stage three while the coordinator and I talked about possible transplant dates for August. All was going forward and then late Thursday afternoon I got a call from the transplant coordinator. Donor #8 failed in stage three that afternoon. (Because of medical privacy issues, the clinic will not give details about the donor to the recipient. All that is said is that there was a “failure.” There is no reason offered. I think that also helps if a donor decides to decline to move forward in the process. It is still the donor’s decision right up to the time of surgery.)

Donor #8 called me and we talked later that night. In his words, he was “heavy hearted” and felt “the wind had been knocked out of his sails.” It was Donor #1 deja vu. What I have been told is that a potential donor will face the door to the clinic with some fear and trepidation. As the weeks go by they either work through the trepidation or they bail out. When they work through it, they come to terms that they are facing surgery and as they pass through the stages they anticipate the surgery. When something happens and everything comes to a stand still, it is like hitting wall except the pain is emotional.

Donor #10 called on Friday to give me an update on his status. I relived the latest events with him and was candidly thinking out loud to him about what folks have volunteered to do and some of the emotional rides my friends have been on through these weeks. There is more than just lots of blood drawn; there is a huge emotional draw. I mentioned how I was wondering if it was worth it to drag my friends through all this and maybe the best thing would be to just resign and wait it out for a cadaveric donation. He had words of encouragement. Since we have known each other for over a decade, he told me in no uncertain terms I was not dragging him through anything and to pipe down. His words helped me understand the donor side better. It was good to hear as the weeks of testing (and waiting) and the process wear on you.

I was at the hospital early Friday for more tests. Blood was drawn for another cross-match. Donor #9 was scheduled to come in after me to draw his blood for the cross-match. We’ll know something in a week. Donor #1 is on vacation, but when he gets back, he’ll have a partner in the heavy heart club. Hopefully, there won’t be too many more members enlisted in that club.

How Do You Donate?

2005-07-07T23:07:00.000-07:00

Several people have asked, about how to donate. At the moment, there are two ways to donate; a cadaveric donation and a live donation. (I’ll save my post for self donation via therapeutic cloning for another time.)

One type of donation is cadaveric. This is after a person dies. You might think that if you have a donor card in your wallet at the time of death your organs would be harvested for donation. That is not necessarily the case.

The non-profit corporation United Network for Organ Sharing (UNOS) operates the Organ Procurement and Transplantation Network (OPTN) through a contract with the Department of Health and Human Services. OPTN coordinates the work of Organ Procurement Organizations (OPO’s). The OPOs educate about organ donation and work with agencies (hospitals, transplant centers, etc.) to identify potential donors, secure consent and distribute donated organs. These groups create and maintain the national waiting list. (There is a national waiting list, but the donor lists are not centralized.)

Although 85% of the US population supports organ donation, actual donation rates are below the national need. At the time of death when circumstances are favorable for donation, a representative from the OPO speaks with the family about donating. If the deceased had not discussed organ donation with their family, the family will often decline to give consent. Currently, in our country (USA) a person must “opt-in” to the organ trade. You do this by signing a Donor Card, or checking the box when you renew/get your driver’s license, or in some states, signing up on the state registry, but if you have not informed your family of your intentions, those standing around the bedside are the ones who will make the decision. Even when a person has opted in, the family has the last word. Sometimes the family will decline even when they know their loved one’s intentions.

Our system for cadaveric donations is opt-in, but what would happen if the system were set up as an opt-out system? In this scenario, if you did not want your organs donated, you would register on a national list. What would happen if we were to register the opt-out with the OPTN? Then when a person died and circumstances would allow organ donation, the OPO would search through the registry to see if the person opted out of donating. If a name did not appear on the registry, it would be presumed the deceased had consented to be a donor. This would reduce the very emotional triangles and other issues with the grieving family.

Other countries have an opt-out policy. They have about a 2% rate of those who have opted out of donating. It would be easier to track down 2% rather than miss out on a potential 98% donation. (Of course, this is the logic from a guy waiting on the list!)

Another issue is with accountability for those maintaining lists. One of my potential donors is a State Representative and he has looked into the donor list in Texas. Apparently, the Texas Department of Public Safety was allocated funds for creating and maintaining the database of donors a couple of state sessions ago. When my friend went to investigate it this last session, guess what? The database had not been created. So, he is making the TDPS accountable for their funding. So, even though you have checked the box when you got your driver’s license, it went no where. Carry your paper card in your wallet.

So on the cadaveric sides of things, until we get an opt-out policy, carry your donor card and tell your family. If you are really serious, you might put a clause in your will to disinherit your family if they go against your wishes. If you need a card, click here. If you need a form to inform your family, click here.

The other type of donation is a live donation. Live donations are becoming more common. A National Kidney Foundation survey stated one in four Americans say they would consider donating a kidney to a stranger. I have been very fortunate because many friends have offered to donate a kidney to me. Some were eliminated from the process because our blood types do not match, others because they have had a disease that would harm me post-transplant because of the immune suppressant drugs. Others have discovered it would be harmful for them to donate.

I only know the process for living donation at Memorial Hermann Hospital in Houston. Their process has four stages. A potential donor must make the initial contact to the transplant clinic. There can be no coercion or exchange of money in a donation and the clinic cannot make the first contact.

Stage one is to call the Transplant Coordinator and make an appointment for an initial evaluation. Once the appointment is made the donor has to face “the door” into the clinic. It is one thing to talk about donating, but to actually walk through the door brings up all sorts of emotions. In this stage, blood pressure is checked and initial labs are done. This includes basic blood work and urinalysis. (My friends have joined me in hauling jugs of urine to the clinic.) All along the process is a psychological evaluation and reality check for the donor so they know what they are doing and what they are getting into.

Stage two involves more blood. The lab draws about 12 vials for testing. The major test this go round is a tissue typing. In this test, the donor’s blood and recipient’s blood are mixed together. This test takes about a week to return and you are looking for a negative cross match. If there is a negative cross match and the other blood work comes back in good standing, then it is on to stage three.

Stage three is a thorough battery of exams. It is like your annual physical on steroids. Every part of the donor’s body is examined; inside and out. The evaluation is to make sure the donor is healthy enough to survive donating a kidney. Stage four is when the medical review board compiles all the data and makes a final decision whether or not to schedule a transplant. Before the transplant, there is one final cross match just to make sure.

The transplant proceeds if the final cross match returns favorable. The transplant requires two operating rooms across from each other. The donor goes into surgery before the recipient. The nephrectomy (kidney removal) takes a couple of hours and then the recipient is taken to surgery to receive the kidney. It makes for a long day. Recovery for the donor can take up to eight weeks. Most folks do well after a couple of weeks. Fortunately, for the donors, the nephrectomy can be done laparoscopic with a small incision. In former days the donor would be cracked open from the back, ribs broken and recovery would take a couple of months.

For the donor, life progresses with one kidney. For the recipient, life has a new lease. There are new ordinances to observe with anti-rejection and immune suppressant drugs, but the sacraments of dialysis are sequestered.

About the Clinic

2005-07-04T16:09:00.000-07:00

Folks have asked about the clinic setting. The clinic is a large open room with 20 chairs with minimal padding (read, hard) that recline. These chairs are arranged in five rows of four with a dialysis machine in between each chair. One row faces the door that opens into the clinic, but the other rows are arranged facing each other making two aisles, the staff calls two bays. My clinic is only licensed for 16 chairs; the other four are for future expansion.

Each bay has two PCT (patient care technicians) and a nurse. You can see the folks on your bay and you can talk with the folks on your bay. To talk with the folks on the ends is difficult, but you can arrange for hand signals. However, there is a point in the treatment when blood pressures drop and everyone kind of glazes over, so the conversation slows. It is also helpful to watch out for the patients. Sometimes people sink and need help from the staff. To talk to the other bay would require more volume and you cannot see the people on the other bay. The staff (techs, nurses, dietician, director of nursing, social worker, doctors) walks through the clinic checking vital signs, administering meds, checking on patients, so there is a lot of conversation with the staff.

Pictured is the machine. The red tubes have my blood in them. The blood leaves my body through an access (For right now it is a catheter in my chest. One tube is in the right atrium of my heart, and the other is spliced into my right jugular vein.) and goes to the machine, is pumped through the artificial kidney (the cylinder on the far right, is it pink colored because my blood is flowing through it as the dialysate solution is flowing counter to my blood flow so as to pull the toxins out of the blood via osmosis) and then returned to my body (colder) through the catheter. When I get my meds, the nurses just pump it into the reservoirs of blood next to the artificial kidney or they shoot it into the tubes as it comes back into my body. No more shots in the arm.

At the end of the treatment, the techs push saline (see the bag hanging top far right) through the tubes and that pushes my blood back into my body. There is only about a cup or two of blood out of my body at any given time. Once the tubes are disconnected from me, there are more procedures and shots of saline and heparin in the catheter to prevent clotting and other problems.

So, yes, there is conversation, but somewhat limited depending upon who is getting on and off the machines as well as how patients are responding to treatments.

My First Holiday Weekend on "The List"

2005-07-04T08:51:00.000-07:00

I was listed on the national transplant list on June 3, 2005 after the transplant attempt with Donor #1 failed. It has been a month and so far, no calls. There are about 62,000 people waiting for kidneys. There are probably 61,998 people ahead of me on the list. There are about 15,000 transplants a year, so you do the math and figure my wait time on the list if the current potential donors don’t work out. I’ll have to wait a while.

You get realistic advice when you are in this predicament. The Transplant Coordinator advised that if you are waiting on the transplant list, you really should not travel on holiday weekends. Especially, you should not travel out of Houston on a holiday weekend. Of course, I initially went to the thought of how big a hassle it would be to arrange dialysis in another clinic, but she explained what she really meant.

Dealing in tissue is an unusual economy. The UNOS (United Network for Organ Sharing – I’ve thought the word sharing to be an interesting term.) people control the waiting list. I’m cataloged waiting for the right match to supply my need. Once on the list, you wait for a call. When the call comes, someone’s brain activity has gone to nil, the family agrees to donate (I’ll save another rant for presumed consent.), the cutters show up, the coordinators and UNOS folks do their magic and calculations to find the right possible matches and the cutters wait to harvest the tissue.

Holiday weekends are important to people waiting on the list because holidays seem to bring out the fools. Fools drive fast, fools drive drunk, fools drive without their seatbelts, fools attempt to out run trains at rail road crossings, fools exchange heated words and then let bullets fly in the heat of the moment. Holiday weekends breed such situations. And these situations provide accelerated opportunity for those waiting on the list. Fortunately, UNOS helps to redeem the folly of fools and allows the waiting to be orderly and with some dignity.

My friends who are on the other side of the transplant experience give me better information. They tell stories of the real scoop. As you get close to the top of the list, you are assigned a pager. When the pager goes off, you gather your packed bag and head to the hospital and feel the anxiety rise. When you get to the hospital you wind up in a laboratory waiting room with other anxious ESRD patients. Blood is drawn from those in the waiting room so the best match is made with the deceased. Two winners of this blood lottery are whisked off to surgery. The non-matched return home to try and get some sleep and then in the morning read the obituaries and speculate who got whose organs.

You think there would be some resentment that you were called in and not selected. Several people tell me they made several trips to the hospital late at night for a potential transplant without results because others were better matches. Remarkably, there is no resentment. The ESRD fraternity has a tough ritual of initiation that creates a strong bond. When one in the fraternity is helped, it helps the rest of the fraternity. And the common desire is to get the best match possible. Although transplantation has its own ritual, returning to the dialysis ritual when a transplant fails takes an arduous toll. Plus, we realize the economy. In this scenario, someone dies; a family waits in another waiting room with feelings of grief. In the midst of their grief, they want to defray their loss. Knowing someone else will have a chance at life is a balm that sooths death’s sting. And at the close of one life, you want that chance at life for another to last as long as possible.

This is my first holiday weekend on “the list.” I doubt I’ll get a call, but it is likely I’ll move up on the list. Some family’s loss will be another family’s gain. At the moment, that is how the game is played. (I’ll save my stem cell rant for another time.) I’ve never been one to cut in line, but Donor #1 is making a long driving trip this weekend and he came through with some macabre humor. Before he departed on his trip, he called to let me know he has made a designation in his wallet. It states he is a donor (and has talked with his family) and he wants his left kidney designated to me. (Now that’s friendship.) If there is no call this weekend, Labor Day looms.

When Cups Refuse to Pass

2005-06-30T23:23:00.000-07:00

Going a little farther, he fell with his face to the ground and prayed, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will."
Matthew 26:39

I have always been intrigued by the Gethsemane Garden passage. When we were in Jerusalem several years ago, we went to the Gethsemane garden area. Gethsemane is a garden where olives grow and are processed. There were olive trees all on the hillside. Our guide instructed us that those who plant olive trees care for the future generations as it takes a generation for an olive tree to produce fruit. I doubt there were any olive trees from the days of Jesus left on that hillside, but there were many very old trees there.

The word Gethsemane means oil press or the place of the press. It was the place where olives grew to maturity, were selected and then processed. I imagine most were selected for producing olive oil. That is where the press came into play. At harvest, the olives would be pressed until they were crushed such that their essence, their oil, was released and gathered.

Back to the Gethsemane passage. I have found it poetic that it was at Gethsemane, the place of the press, that Jesus was pressed to make a decision. Here was full deity and full humanity pressing the issue of what to do with respect to destiny. Jesus knew what was coming; betrayal, torture, crucifixion. He knew he had some options. He could have escaped, but here is the intriguing part. He submitted. The submission did bring the items he dreaded most, but the submission also fulfilled the purposes of God.

Gethsemane is the place where God bargains for something. In all the possibilities of purpose, may this cup be taken? The cup refused to pass. What followed was unpleasant, but it brought about something remarkable. The resurrection followed Gethsemane. At the time of Gethsemane all that was visible was a limited view and yet there was something beyond that was unseen except by the eyes of God.

We bargain with God, too. Most often when hard circumstances come into our lives is when the bargaining begins. We plead for cups to pass so that we can side step unpleasant things. There are times when cups refuse to pass. There are circumstances that engulf our lives and even though we plead, the cup remains. At those times we come face to face with our God. Most of us want a self-help god, one that makes everything better. However, when cups refuse to pass, we encounter the sovereign God, not the self made self-help god. In the encounter of the sovereign God, we begin to see through and beyond the hard cups that come to our lives, knowing that God is leading somewhere in our history. It is only a sovereign God that can help us at those times. When we cannot see beyond, the sovereign God sees what is unseen, those items which are unrevealed.

I think about this experience of dialysis. Starting off, looking into the abyss of hours a week tethered to a machine, I could see no good (except saving my life) out of this experience. It was a cup I’d rather pass. The cup stuck around and still sticks around. My self-helping god did not appear and rescue me, but the sovereign God has created an experience that is sustaining and bringing about some divine purpose.

There are some new friendships. Some are with other patients, others are with the staff, who have no desire to engage in anything of the church and now they have a Baptist preacher stuck in their midst for about 15 hours a week. Stereotypes are falling aside and authenticity is prevailing. Today, one of the “tenured” patients (who has been on dialysis for the past seven years) told me she was so glad I was in the clinic. She perceives a difference in the clinic. Bummer cup, but there are many things unseen, but the sovereign God sees them.

Gethsemane cups abound and they are heavy enough to press you, perhaps even crush you. The experience of submission with the sovereign God extracts an essence released in the press and in due time reveals glimmers of purpose that redeems the time while we hold the cup that refuses to pass.

A Loose Fitting Mortality

2005-06-25T16:59:00.000-07:00

I did dialysis early today. Skyler has the first All Star game tonight. It’s in Baytown at 8:00 and I wanted to be recovered for the game, so this was an experiment. I was at the 5:30 am time with the clinic. Also, Weston left for camp today at 2:00. I had hoped to be at the bus to send him off, but that did not happen.

We were talking at home the other day about Weston heading off to camp. (Actually, the family would say I was whining.) There were laments about next month. Weston is on his way to Colorado. I was supposed to go with him to Colorado. We were going to camp for the week in the mountains and white water raft. I have learned I handle life better when there is at least once a year when I get out and experience terrain larger and more natural than the Kemah bridge.

Anyway, I had that week planned out and was looking forward to the mountains and a rushing river. As a matter of fact, I had the whole month planned. Weston and I were going to head on to Colorado for this week while Skyler finished All Stars. Then after All Stars, Shelley and Skyler were supposed to come up to Colorado where we were going to explore a new family ministry called Sonrise Mountain Ranch. (Great ministry and we were going to see what they could offer for a Family Camp.)

After the week with Sonrise, we were planning to drive down to Durango to be with our youth group for their youth camp. The final aspects of the plan was to finish the month off by going to the Navajo Mission Trip and check up on the mission team in New Mexico. It was a great plan for the month of July and involved lots of mountains and less concrete than Houston. But that plan is not going to be implemented – this year.

That was when I was talking (or whining depending upon who you talk to) and blurted out how dialysis has messed up things this summer. That was when my better half took out the calendar and helped me see things in a different perspective.

She reminded me that technically, next week would be about the time I would have died if it were not for this inconvenience called dialysis. When folks get to the stage of being on dialysis, they usually have between 1 to 5 weeks to live. Next week will be week six for me. (Gee, where does the time go when you’re having so much fun?!) I feel better than I have felt in years. Without the intervention of treatment, I don’t want to imagine how bad it would have become. It was bad enough when we started.

When the consequences are pointed out, it is always sobering. I prefer a loose fitting mortality, one that wears like a baggy sweater and is not too tight to wear. You know, one that kind of hangs off your frame and gathers around you and does not get in your way too much. It is easy to think we control the destinies of our lives and the great “the end” is some where out there and it does not encroach on our lives. That is the type of mortality I like, the one held at bay. However, mortality is a tighter fit for ESRD patients. The machines are a constant reminder and even with a transplant, mortality is just an arm’s length away. I’ve talked with transplant folks and they say in the back of their mind, even though things are going well, they know things really are not right and one little infection or something else could happen to take it all down. It is all borrowed time – time allowed from artificial means.

The art seems to be the ability to wear this tighter fitting mortality as if it were a baggy, comfortable sweater. With this borrowed time it is also time to make plans and get on with life. I am in a more reflective posture and watching more people these days. I find it amazing what we take for granted and how we really put off living in order to wait for some extraordinary circumstance. I’m seeing another reality these days. The reality is every experience is an extraordinary circumstance carried out on borrowed time.

The Chair Won Today

2005-06-23T17:59:00.000-07:00

I have had a couple of good weeks of treatment. I had even decided it was time to start driving myself to and from the clinic. That was until today. The chair won today.

When you do dialysis, the machine pulls toxins out of the blood, but it also pulls fluids. One guy had to have 10 kilos pulled. That is roughly 22 pounds. That is a lot of pulling. The techs say when he stood up, his pants fell down.

The way it works is that you are designated a “dry weight” by the clinic. You weigh yourself as you enter the clinic to determine how much to pull off. At the end of the experience, you weigh yourself to see what was actually done. Most folks come into the clinic for their treatments above their dry weight and then dialyze down to the dry weight and depart. When they come back in to the clinic for treatment, they are back above their dry weight and repeat the process. In former days, the machines were not as sophisticated and it was a guess. One nurse told a story of how someone had dialyzed six hours and only pulled a couple of pounds and then had to go back on the machine for a couple more hours to pull to the target weight. I can’t imagine being ready to leave and then told you have to do it for a couple more hours. At the end of four hours, I’m more than ready and happy to get out of there.

When they pull too much weight, you know it. You know it because you start to cramp. Fortunately, they can push some saline into the blood and that helps to ease the pain. Today they pulled too much off of me (not 10 kilos) and I could hardly move at the end of the treatment experience. Their problem was I came in under my dry weight and under my previous exit weight and instead of “holding” they continued to pull fluid. So much for driving myself home. Tie that experience to the usual all-body tingle of electrolyte exchange and the fact that I was put on 1 hour late and it equals to a long day.

I’m calling it a night and I’m looking forward to tomorrow. It has to be a better day.

Cross Pollination

2005-06-21T20:25:00.000-07:00

It was a busy weekend and not much time to write. Saturdays are a busy day in the burbs between dialysis, recovery and getting kids to where they need to be.

It was great to have friends come by and sit with me. The clinic was slow getting people on the machines during my shift – a backlog from the 5:30 am shift. I got on at 10:40, so it was a longer day. Also, it took a while to get all the patients on, so it was 11:00 before guests could enter the clinic. The medical staff keeps the guests out of the clinic area until everyone is hooked up. There is potential for blood borne pathogens (mostly HepB) and they want to keep the risk down. After a patient leaves the chair, the chair is wiped down with a bleach cleanser to clean up any mess (like blood) and to kill any germs. A couple of my friends who did not know each other had to wait in the lobby. I don’t know how they did it, but they figured out they were here to be with me.

I have friends from various sectors of the city and from diverse backgrounds. It was amusing to think about these two in the lobby talking with each other. About the only thing they had in common was the cross, so I think of it as a time for cross-pollination. I can only imagine their conversation. It was much more amusing to engage in a conversation with them. It was the competition of the conversationalists. We talked about all sorts of things. After a while, a couple of more friends came by and folks rotated out. I’m thankful for the guests.

The clinic can sometimes feel like the second to the last night of a youth camp. It is that time when people know each other just enough and are starting to get on each other’s nerves and you cannot wait to get home. There is a cross pollination of backgrounds in the clinic. I am listening to the other patients talk and there are things that get on folks nerves. One patient is upset with “Whistler” the patient who whistles most of the time. One patient is known in whispers as “The Bleeder” and if you sit next to that patient, when the techs “de-cannulate” and remove the needles, there is a geyser of blood. There is “The Moaner” who is loud. I’m known as the guy who has guests.

The dietician has approached me about being the patient advocate. I’m not sure what that will mean, but it sounds like an invitation to explore. The initial concern is with patients in need of nutrient supplements that Texas Medicare will not cover. In other states, patients get this benefit, but not in Texas. The immediate need is about $2000 for the year to help five patients without resources to receive these supplements. The dietician asked if I could help with fund raising. (I guess she does not really know what I do!) Fund raising is not a problem, but I’m thinking the better solution would be the resolution of the policy that prohibits folks in Texas from receiving the benefit. This looks like a great opportunity for cross pollination.

The Running of the Donors

2005-06-16T20:20:00.000-07:00

Next month will be the running of the bulls in Pamplona during the San Fermin Festival. People enjoy the festival and pay homage to the patron saint by out running the horns of a bull. I look at that as wasted tissue these days. In Houston, it has been the running of the donors.

My transplant coordinator continues to process calls from friends, several friends. She is impressed with the folks she is meeting and I have to agree, they are great people. Another potential donor found out yesterday she is not able to donate to me. The list is getting slim. It is a humongous course of action to donate an organ. I think that is why the transplant coordinator requires the potential donors to come to the clinic and actually walk through the door. A telephone call is one thing, but when you walk through the door it raises other issues. And it needs to raise those issues. The likelihood of having to wait for a cadaveric donor is gaining in the odds. After running through several donors, I realize how unique the experience with donor #1 was.

A new possibility is emerging. Johns Hopkins Hospital is working with optimized matches of multiple donors and a concept called Kidney Paired Donations. They have worked a new algorithm with this concept that increases the potential number of transplants. The way it works is that if I have a donor that is not a match for me, that donor might be a match for another person waiting on the transplant list. From there, they try to match the mismatches of patients and their donors. I think of it like a game of “Go Fish” for organs. Anyone got any O Positives out there?

Memorial Hermann is beginning to explore the paired donation concept. Right now, Johns Hopkins is the only hospital doing the paired donations. If Memorial Hermann opens up to the idea, and it could take some time for a medical facility to make changes, then that would be an expanded option for transplant recipients. That will also raise new issues for donors.

Shoe's on the Other Foot

2005-06-16T17:58:00.000-07:00

It has been a shift in roles to be sick. I have never been a sick person. Boy, has that changed. In my usual role, I am accustomed to being the one who stands at the foot of the bed and greets the sick one in clinics and hospital beds rather than being the one on this side of the conversation. I prefer the former role.

This experience has been a type of initiation. I am learning to unlearn some of my former behaviors. There are some phrases I’ll never utter again to someone who is sick. I’ll always be conscious of the perimeter of a patient’s bed. I’ll do my best to be a non-anxious presence.

I am accepting the gifts that come my way. They show up as friends driving me to the clinic, meals delivered and conversations. It has been a great lift for friends to drive me to the clinic and then at the conclusion of the treatments to collect my stumbling carcass and haul me home. It has also been a humbling experience to have people offer to donate a kidney to me. If I think about how it sounds from the outside, it is odd to talk with folks about actually cutting a viable organ out of their body and then surgically implanting it in to me. When people offer to donate, that is a gift, too. I tell them how much I appreciate it, but I don’t know that they fully comprehend. The experience and gift of community has been overwhelming and a steady hand in this turmoil.

Another new footing is dealing with waiting. This is probably the first time circumstances are totally out of my control. I am accustomed to shaping things. I mean, I’m even getting a degree in that discipline! I’ll confess, if I think about what has happened and the natural scenarios and outcomes too much, I freak out. (Fortunately, those episodes have been infrequent and alone because I know how anxiety can create an epidemic.) For the most part, I don’t get rattled about anything and especially I don’t get rattled to the core and freak out, but this has brought me to new territory. This new territory brings plenty of encounters to be tested and see what you are made of and if what you believe is really what you believe.

It has also been a time to experience an ongoing sense of God’s presence in a new way. To be dependent upon a machine for life is a circumstance I’ve never experienced before. People are praying. This is a needy time in my life and a time to lean into that peace that goes beyond understanding. That peace is giving me a steady platform.

The Monthly Report Card

2005-06-14T20:54:00.000-07:00

I did not know I was going to get a “monthly report card” from the Clear Lake Kidney Center. It is a report on my monthly blood work. It is something the dietician has put together. It reflects her personality. On the “Report Card” she wrote that I have “great labs” this month. Maybe she’ll give me a little sticker or something on the back of my chair.

At the moment, my labs are great for a transplant. If something drifts, that could postpone a transplant. It is amazing what the kidneys regulate and how hard you have to work to keep things in range. We are watching phosphorus and calcium since dialysis does not pull off phosphorus very well. I am also watching my eyes. As the phosphorus builds up, your skin itches and eyes tend to water and get bloodshot. I take a phosphate binder to help with phosphorus levels. My phosphate binder is the mighty medicine, Tums. I eat those before every meal. It is rather cruel to get your appetite back and then mask the taste of all meals with a chalky binder.

They also gave me information about coping and depression. Something tells me a wall is approaching. I think it is kind of like the Shawshank Redemption when the inmates bet on who would crack up the first night. There must be some noticeable pattern with dialysis patients. I guess you get into dialysis by being so sick you don’t really realize what is going on. Then you get enough treatments and you start to feel better and get your head cleared up and then after a couple of weeks you begin to realize, this is not going away. And then you have to deal with it. Last week, a lady across from me cried for the full four hours. I’ll look and see if they have attitude evaluations on our monthly report card.

The Honorable sat with me today. He makes me laugh. (During Little League we would call games. We called ourselves The Honorable and The Preacher. Things were fine until we started talking about the people in the stands over the microphone. The Little League President agreed it was entertaining, but asked us to not do that anymore.) They are back from vacation and he mentioned he was going to call the transplant coordinator and get evaluated. I checked voicemail and there was another friend who left a message wanting to explore donation. It has been amazing the number of folks who have offered to donate. Two more people were scheduled to go in to the transplant clinic today for evaluation. It will be a while until we get their “report card” back. In the meantime, I feel loved and appreciated and I’ll try to keep my labs in good shape for my monthly report card.

Two Years

2005-06-13T20:17:00.000-07:00

I am getting my head around my transplant coordinator’s response to one of my questions. Donors are being evaluated and for some reason or another, a live donor has not worked out - yet. When I asked about how long it would be for me to be matched with a kidney while waiting for a cadaveric donor, my coordinator told me to plan on about two years waiting on the transplant list. Two years.

Two years. That seems like such a long time. In that time, I will have two teenagers in the house. I’ll be a more middle aged man. That will be mere 1,248 more hours of dialysis. Another 312 days of staggering into bed after a session at the dialysis center. (But who is counting?) Of course, my coordinator may not be accurate. It could be less time. Or it could be more time.

I believe I am being stirred up and gaining a new agenda and platform. There are approximately 62,000 people waiting for a kidney transplant at the moment. The number grows every year. Last year approximately 8900 cadaveric transplants and 6500 live donor transplants were performed. That is good news, but it is not enough good news since that is pretty much a static rate while the need continues to rise every year. In addition, 3300 people died waiting for a transplant. One thing I have read is that there is not a wait time in Europe because of their policies of presumed consent. I’ll have to check and see what happens to those who believe they are organ donors in the USA. It may be time for me to begin a more earnest campaign with regards to stem cell research and therapeutic cloning.

Two years. That was the amount of time I lived in Korea. That was an amazing time for incarnational ministry and for some great things to happen. It will take some time to get my head around this one.

Recent Conversations

2005-06-11T22:31:00.000-07:00

At the clinic, I saw one of our church members. She had a transplant about a year after my mom had her transplant. She was there for her annual check up and all the reports were good. There is always a little anxiety about how the new kidney is going to do.

Signing in at the clinic the receptionist told me she was looking for me. She had not heard about the canceled transplant until she came in to the clinic and she was surprised when she saw me up to her. It was good to talk with her. We compared stories about our encounters at the clinic.

She has been one of the regular visitors while I am doing dialysis. We have a good time laughing about things that only folks going through this can understand; doctors, holiday weekends, meds, hauling jugs of urine to clinics, etc.

My transplant coordinator has been in some recent conversations, too. She is meeting some of my friends. I have great friends and she has been impressed. She has asked about what it is that I do in life. That has sparked an interest in her to check out UBC since she lives near the area. I think there is more to emerge in this part of the story.

Following all the clinic work I had lunch with one of my philosopher friends. We take our time together. We went to “Bubba’s Ice House” at Westpark and 610. It is a dump of a place, but when you’re philosophising, surroundings don’t matter much. Also, they have the choice of buffalo or beef burgers - like our philosophy sessions most times buffalo and sometimes something beefy. We had not seen each other in a while and we caught up. He spoke of his pressures. I showed him my catheter. We enjoyed the comfort of each other’s company as we pondered big questions.

One of the patients in the dialysis clinic spoke with me this morning. I had never met her, but she expressed appreciation for UBC. I’ve notice most of the patients come by ambulance or the Red Cross transportation. However, on Saturdays, the Red Cross does not operate, so some of these folks either miss their treatment (not a good idea) or have to rustle up a ride. I mentioned to the dialysis clinic’s social worker UBC’s Driving With Care ministry. Driving With Care brought this woman to the clinic today. She was very grateful.

Today, three friends came by and sat with me. It helps to pass the time. We had a good time talking about life.

Feeling Good Days

2005-06-09T18:33:00.000-07:00

Life has a new rhythm at the moment. For the most part, I’m feeling pretty good, especially when I compare these days to the way I felt at the beginning of May. I am trying not to forget just how sick I was. (I suppose technically, I am still sick, but I feel much better the day after dialysis.) When the new rhythm beats me up and grinds on me, that memory helps me find a gracious attitude. I know where I could wind up.

The rhythm is pretty scabrous. I’ve written before how during dialysis I do pretty well until the 2.5 hour mark and then the chills start for the final 1.5 hour. That continues, but I’ve found a thermos of hot tea to be helpful at the 2 hour mark. The only drawback is it adds fluid to my weight and the techs are ones to want to take it off and then the cramping begins. I’ve tried eating while doing dialysis. Not a good idea.

After dialysis, I feel drained and lifeless. I’m not sure how to adequately explain the feeling and I try to get beyond it or evade it with sleep as much as I can. I’m capable of getting in bed and sleeping for about 4 or so hours after dialysis until the tingling subside. But after that time, my head clears, my body is still a little slow, and I begin to feel good. By the next morning, I am feeling great. So much so, I have had the thought of getting up VERY early to enjoy the ENTIRE day after dialysis. And people know I am NOT a morning person. It is a shame to waste any minute of feeling good. However, I cannot see a staff enjoying the thought of a 4:00 am staff meeting. By the evening of the following day, “the taste” returns and reminds me. (I told you I have thick denial.)

The third “day after” I remember waking up early and not feeling “right.” I could not get why I did not feel right, but after a while I realized the unusual feeling was that I was feeling good. I was feeling better than I have felt in years. It is hard to believe that in a few weeks there has been a turn around, but it has come with a cost as the schedule takes some toll.

This disease is a slow killer. It slowly erodes your health little at a time. And as your health erodes, your body adopts and adjusts to the new bad situation and you think the new bad is normal. It is a classic feedback example for a system in decline.

The doctors told me today that my condition was end stage five years ago and that this had been coming on for some time, perhaps even a couple of decades, even at the time of diagnosis. It is sobering to think through how health can make a huge difference. I think about some decisions made during this time of decline that if I had had a clearer head, what the difference might be today. I think about some of the relationships I have today that were founded within the past several years and how these folks have never known the me that was not tossed in the throes of being sick.

The next round of donor evaluation is taking a while. Friends have called in this week to set up an appointment for an evaluation. We discovered today that donor #2 is not compatible, but with a clearer head, that news is easier to take. And I welcome tomorrow because it is going to be one of the feeling good days.

Clinic Talk

2005-06-07T19:34:00.000-07:00

It seemed to take forever today. Maybe it was the let down that I was not supposed to be there today. Maybe is was the condolences of the staff who had not heard about the cancellation who came by to cheer me up as they expressed how sad they were that I was not in extreme pain from a 12 inch incision. (I told you there is a bizarre sense of community in this place.) Anyway, the time on the machine seemed longer today.

They cramped me today. These machines are incredible. They monitor the osmosis and they also pull off fluid. You have a “dry” weight which is your target and when you come in to the clinic, you weigh yourself, record your weight, get your blood pressure cuff on and they set the machine for how much fluid to pull off. Today I was scheduled to pull 2 kilos which would be about 5 lbs. I did not think I had that much fluid to pull. Protesting did not work. After about three hours, my feet began to cramp and they had to push about 300 cc’s of saline. Cramping is part of the gig.

But it’s better. BD, before dialysis, my calves would cramp every night around 2:00 am. I remember I went skiing with D a couple of years ago and I had a cramping episode. He woke from a dead sleep and cringed as I worked for an hour to get the muscle to relax. In early May, that was happening every night and S would just watch with a helpless look. Since dialysis, I have not had one of those early morning episodes.

Today they put me in the chair next to the clinic matron. She’s been doing dialysis for seven years. She has the center seat in the clinic and so far, she has ALWAYS been in that chair. I guess it is like the queen of the mound. She is the care taker of my shift. She greets everyone, says goodbye as every one before her departs. Nothing gets by her. She cramped today, too.

She was asking if I was going to get a permanent access now that the transplant fell through. I told her there were other potential donors – matter of fact, there are five more friends who have offered to be tested and I can “feel the love” – and I plan to defer the permanent access decision until I know what will happen with the next round of potential donors.

At my age, it is likely I’ll have more than one transplant. Mind you, I plan to make it work as long as I can, but the odds are that if I get 70 years, I am at least a two transplant potential. If the living donor option does not pan out, I’m on the list for the next two years. I cannot do dialysis with the current catheter for two years. I’ll have to have a fistula.

A fistula is the joining of a vein and an artery. It creates a bulging access where the techs can cannulate with the needles for the blood to flow into the machine. (Yes, it looks pretty painful to have the needles stuck into the access. The techs tell me it’s not too bad, yeah right.) The fistula will need a couple of months to mature. The problem with the access is that it sometimes clots and you have to create another one. Pretty much, you put the left arm in, then the right arm in and after that it is the hokey pokey. When you run out of accesses, well, let’s not think about that.

I spoke with the nurses and techs about my disease, FSGS. No one seems to know much about it nor are there answers to my questions. I am beginning to get my mind around the disappointing thought that the medical community has given up on a cure. I was laughed at by my surgeon when I mentioned that idea. Treatment is all they desire to do. Talking with the other folks in the clinic, they have bought into that paradigm, too.

As I wrote earlier, the clinic is an open room and as we can, we try to talk with one another. Discussions in the past couple of weeks have been fairly surface. As usual, I have kept my profession under wraps since once it is evinced it tends to change the mood of the conversation. One of the techs outted me and the other tech said she thought I was in marketing. The matron thought I was a student, but now that she knows me as a pastor, the conversations are getting interesting, practical theodicy. Our discussion dwelled today on the thought that is in the back of every ESRD patient’s mind. Without these machines or a transplant, the last hooray comes pretty quick. No matter where you turn, you are reminded, there is no cure. When you sign medical papers, they tend to drill in the treatment options and then kick it up to you that if you do nothing, you die. In light of no cure, we were discussing that if we refuse treatment, are we committing suicide? Listening to some of the stories in the clinic, some folks are tired. And after ongoing years of treatment, the routine remains the same and the eventual exit is not on your own two feet. I think about some of my Tuesday afternoon conversations of a couple of months ago and how trivial those topics seem in light of today’s conversations. The clinic talk has become interesting and real. There is an authenticity with this tribe that is permitting theology in the real world.

New Limits

2005-06-06T15:45:00.000-07:00

Friday’s drama has settled somewhat. I mean how upset can you really be if what a good friend is offering to do will compromise his health? I rested in the decision and that rationale. It has helped the disappointment for me. I don’t know about Dan. He is better today, but he was talking about appealing the review board's decision, but I am opposed. It’s time to move on.

Saturday’s dialysis was pretty sad and the clinic was disappointed. Eric, the charge nurse, went ballistic that I did not have my mask on to protect me from infection. When I explained why I was not wearing a mask he told me he was really sorry I was going to be sticking around as a patient. He has explained to me that most of the patients don’t leave on their own two feet [frankly, my nickname for the clinic has become “St. Peter’s Waiting Room” as most of the patients could see the pearly gates any day now] and when one has a transplant opportunity, it helps the staff. The clinic has a feel of bizarre koinonia and on one of these days I’ll post about on that item.

David is one of the patients. He is my new friend from the clinic and he was upset when he heard. He was a little sad to know I would be leaving as I am the only person in there remotely close to his age. He is mid-20’s been doing this since his kidneys failed when he was 13 years old. He is the young veteran and I try to learn from him as much as I can. I’m not sure what the atmosphere will be like tomorrow, since that was the day scheduled for the transplant. He told me he was prepared to say goodbye on Saturday and now he is torn about seeing me back in on Tuesday; glad to still have me around, but sad that I’ll be around since there was a chance to depart. This journey really plays with your emotions.

Most of the people in the clinic know about every one’s business. This is not one of those “private” medical encounters. Before this, I’ve been accustomed to the private office, hushed private talks with the nurses and doctors in the private examination room. There is nothing private about a dialysis clinic, unless you are infectious and then they quarantine you. Every one is just out in the open and every conversation is out in the open. You see each other’s blood. You watch the techs and nurses stick the other patients to hook them up. You hear about what the recent issues were between treatments. Again, it is a bizarre fellowship.

After dialysis on Saturday, I seemed to bounce back earlier than usual. So I thought I’d just hop on down to church for the worship service and sit with the family. I wish I had not. By 8:00 pm, I almost blacked out. It was one of those episodes where the darkness starts at the periphery and begins to close in. I held it at bay as much as I could and even pushed it back. Unfortunately, the sermon was not finished until 8:30 pm and I thought I was going to just fall out right there on the floor. (I don't really think it was the sermon's fault, either, but...) As soon as I appropriately could, I found an exit and vamoosed. I did have the thought that if I had passed out at a charismatic church, no one would have thought anything about it. Who knows, they may have thrown the ole holy oil on me and gone to healing prayers or something and healed me of this affliction. But in a Baptist church, well that is a whole other issue. Note to self – you still have new limits. Don’t push it. Almost falling out of a gazebo at the outdoor wedding should have been warning enough. (I'll tell that story in the near future.)

Sunday was not too bad. There were lots of sad faces, condolences and people not knowing what to say or do, so they skirted to the edges of the hallway. It was touching to know so many people were pulling for this to happen. And now we get to pull some more as we wait and learn some new limits.

A Long Quiet Drive to the Medical Center

2005-06-03T17:40:00.000-07:00

We got the word yesterday that the transplant was canceled. However, we were not given a reason as to why the decision was made. I know I talked with the nurse, but I was in the post-dialysis haze, so I am not sure what exactly happened. It was a night of speculation.

Dan picked me up about 9:30 this morning and we journeyed down to the Medical Center. All I could muster through the muffle of my little mask was to say a bunch of “Thank you” and “I appreciate all you’ve done” statements and all he could say was, “I’m sorry.” Disappointment is one of the thickest moods, especially when shared in the front seat. Neither of us was really in a mood for conversation. The thought of all the work for many weeks to be snatched away within the final minutes coupled with ponderings about a potential problem with the donor does not make for great conversation anyway. It was a long quiet journey to the medical center.

The coordinator told me I did not have to wear the mask, so I gratefully took the thing off and we waited together for the transplant surgeon. The news we got was that if Dan donated, it would leave him in a compromised position. There are some follow-up things he needs to do, too, but the bottom line was if he proceeded, there were concerns about him living with one kidney. Hearing that statement helped to dissipate the disappointment as I do not wish kidney trouble on anyone, especially good friends. And it was a good catch. It was one of my requirements that no friends who offer to donate take unnecessary risks for this event or the future.

We drove back, but I was not a great conversationalist. There was relief in the driver’s seat, but in the passenger seat I began to think through that the catheter is now no longer a temporary thing. For all this time, I’d thought dialysis was a short parenthetical experience in my life. Perhaps that thought was more denial. We are at least six weeks away from another potential donor finishing the process and what happens if the next one does not work out? It may be time for the next surgery to allow a fistula to mature or time to consider PD. The coordinator told me I’d be put on “the list” today and for me to receive a transplant without a live donor would likely take up to two years. I know I cannot have this tesio catheter, as great as it is, for two years. New decisions are needed in the near future.

The Leases on Life

2005-06-02T15:56:00.000-07:00

I made plans today. I sent an email to my staff stating I had swallowed the first big handful of immune suppressant drugs that will be my friends for the rest of my life in anticipation of a transplant on June 7, 2005. Yes, that would be Tuesday. Yes, that is a mere five days from now.

I told them how I was waiting to hear from the medical review board about a thumbs up or down on the transplant, but the board was optimistic and all looked good enough to start killing off my immune system. Therefore, the doctors got the prescriptions filled and I ate the handful of pills to get ready for the plans for next week.

I explained how with a compromised immune system I would have some electronic communication, but no face-to-face communication, or, as I’ll see it, your-germs-to-my-lack-of-ability-to-fight-off-your-germs communication. And to not expect any communication next week as I would be too busy hitting the morphine pump to tap out emails or phone numbers.

I “outted” the donor. Told people to send him big expensive gifts or maybe flowers in the hospital since I could not have them in my room. I told ‘em how I’m not sure a week’s stay at Memorial Hermann is such a grand prize for him, but for me it is Ed-McMahon-clearing-house-mega-lotto-power-ball winning. How this act from this friend is the most gracious and generous altruistic act I have ever experienced. I recapped how this guy endured almost six weeks of sometimes-grueling medical tests as well as early morning drives down to the medical center in order to give up a vital and viable organ to me.

Then… 5:00 pm today.

I heard from the transplant coordinator. The medical review board deliberated my case this afternoon and has made a decision. They have determined that my donor is not a good match. They have canceled the transplant. Donor-wise we are back to square one, donor #2.

Now, I am all drugged up and no place to go, literally. I was told the immune suppressant drugs take three days to metabolize. I’ll check with the doctors tomorrow to see how long I am quarantined, but I’m pretty sure I’ll be back in the office, not the hospital prep, on Monday. I did dialysis today and I’m still in the post-dialysis haze, so I have not had time to really process this news. Of course, there’s disappointment, but it is part of the deal and to be expected. Nevertheless, it still hurts. It’s not that gapping wound kind of hurt, but more of a sizzle-simmer-will-this-go-away kind of hurt. There’s no physical mess to clean up, but the emotional wading is deep.

My friend is pretty upset. In my hazy thinking, I am wondering now if it is worthwhile to drag another friend through this. I feel very loved that a good friend would be willing to endure all this stuff for me. This act was giving me a new lease on life. However, for some reason, I’m still bound to the old lease for the moment.

Waiting On Wednesday

2005-05-31T18:59:00.000-07:00

The final call did not come today. Instead, a call for one more test, a six hour test and another day at the medical center. Donor #1 is going WAY beyond the call of duty. Hopefully tomorrow something conclusive will emerge.

The transplant coordinator called today. She is optimistic this thing is going to go forward and on June 7 we will have a transplant. They are starting me on the anti-rejection and immune suppressant medicines beginning Thursday. In essence, I become an AIDS patient as the drugs suppress my immune system. The plan is to keep the recipient alive just enough to not kill the donated organ and then find the balance between the recipient and donated organ survival. Thursday I go into seclusion for a couple of months. Howard Hughes time. Have any Kleenex boxes?

Dialysis is getting better. The recovery takes a while as I am worn out when the four hours are finished. After the three hour mark, it is as if every cell in my body is vibrating. The entire epidermis tingles. The sensation of vibration finally calms in the evening in time to go to bed. I’ll endue this because I know in the morning I’ll feel much better.

Tuesday’s Potential

2005-05-30T17:57:00.000-07:00

Tomorrow is Tuesday. It will be another day in my new routine. I’ll try to get to work by 6:00ish, meet with men’s groups at 6:30 and then try to finish some budgets and then check in to my chair at 10:00 am and get hooked up, but it is a day that has new possibilities.

I do a lot of phone calling while doing dialysis. I do calls until I start the shivering. After about 2.5 hours I cannot help but shiver and listen to the hum in my body. I don’t know if it is electrolytes finding their new balance or that the blood is colder coming back in to my body and it drags my body temperature down and it is just cold. This leaves the last 1.5 hour in the chair to be the longest hours of my week. There is a clock on the wall and I just count down, “One hour, thirty minutes. One hour, twenty-nine minutes. One hour twenty-eight minutes.” and so on. “They” say it will get better.

This Tuesday will be an even longer Tuesday. Tomorrow is the day I get word on about a month’s worth of work. Donor #1 did the final test last Thursday, but the doctors had already departed for the holiday weekend. The docs are gone today for Memorial Day and it will be Tuesday when they get back and read the tests. If the tests come back positive, then donor #1 has a decision to make.

Donor #1 is a bit shy at the moment. He doesn’t want the notoriety. There will be time to give him his due. He is one of my best friends and for the past 15 years we have shared life, but the decision he may have to make is if he really wants to share his life with me in a more profound way than we have ever shared. If this test comes back positive, my good friend needs to decide if he wants to surrender a viable working organ that is essential for his health to me.

He is also a little concerned that there may be a show stopper. The word tomorrow may be that there is something that will prevent the transplant to progress forward. I can see the concern in his eyes and he helps me be centered and cautiously optimistic. I see concern in his eyes for several reasons. One because he may have to pony up a kidney, but also because he has joined my journey. He has watched the symptoms take their toll on my life for the past five years. When needed he provided the right diversions to get my mind off what was going on. He has also helped me see brighter days when all I could see was dark days. He is one of the most intelligent individuals I know and I am not sure if it is logic or love that motivates him.

Tomorrow has potential. I’ll make phone calls, but I’ll wait for just one that will direct the course of my life. If it happens after 2.5 hours in the chair, it will start a whole new countdown with all new types of shivers.

The Dreaded Phrase

2005-05-30T16:28:00.000-07:00

Two weeks ago Friday, I heard the words I have been dreading to hear for the past several years. I have done everything I know to do to run from the phrase, but on Friday, May 13, there was no escape. I tried, but when I met with the doctors, their words were, “Mr. Waldo, there are no other options. It is now time to start dialysis.”

The "time-has-finally-come-to-do-dialysis" phrase is not an easy phrase to swallow, at least not for me. I have been battling the poor genetic endowment of bad kidneys for five LONG years. I have done everything the doctors, specialists, holy rollers who have anointed me with oil have told me to do, but somewhere deep within I have known all along, there was no escape, but I have thick denial. It continues to grow thinner by the minute.

“Something” was determined to be wrong about nine years ago and five years ago, “something” got a name. The short term is focal sclerosis. FS is a kidney disease where the kidneys scar for some reason and as the scarring increases, the ability of the kidneys to function decreases. The first four years while we sought a diagnosis were really not a battle, but once it had a name, I had a foe and I fought it for five years, but this spring, things began to fall apart and I lost the battle. I hate losing.

The symptoms were increasing. I was as sick as I have ever been. Fatigue was pretty severe. It took every ounce of my energy to get out of bed. I’d do as much as I could and then come home for lunch. However, the uremia creates a bad taste in your mouth and you do not have an appetite. So, I’d just come home and sleep through lunch, get up and head back to work, come home and crash again. My color was ashen. I’d look into my eyes and they were pretty hollow. People would just stare at me, wondering about me. I lost weight and felt horrible all the time. I'll leave the other symptoms for another time.

The bottom started to fall out this spring. I dreaded knowing my options were about to be limited to three, well actually four. ESRD, End Stage Renal Disease, is a pain. The kidneys do so much for the body’s systems that once the kidneys go, there are other things that start to get messed up. There is no cure for ESRD. Now that I have crossed this threshold, the options open to me are: peritoneal dialysis, hemodialysis, transplant or death.

Peritoneal dialysis is dialysis through the peritoneal cavity. A catheter is inserted into the abdomen and after a time of healing, you use the catheter as the access for putting the dialysate into the body. The dialysate is transferred into the peritoneal cavity via the catheter and allowed to dwell. Osmosis takes place during the dwelling and after several hours, you drain the contents out of the peritoneal cavity and refill. You do this about 4 times a day and during the night with a machine called a cycler. You can find out more at this website, if you are interested. Peritoneal Dialysis

The other dialysis is hemodialysis. That is where an access is created so that blood can be taken from the body and put through a filter and then pumped back into the body. Most folks have a fistula or a graf put in their arms, but I have a tesio catheter in my chest. Here is a site about Hemodialysis.

The other option is a transplant. Here is information on a kidney transplant. The last option is to do nothing and wait to die. Fortunately, there are options. About 40 years ago, the only option available to my grandfather was to die. He died of ESRD when I was a kid and I have found a type of identification with him through all this. I remember his breath, I remember how his color was inhuman, I remember how weak a strong man became and I remember him pretty much shriveling up in a corner hospital bed and wasting away in a short amount of time.

I have chosen not to die.

In February/March, when things were beginning to fall apart, I got sick enough to apply for a kidney transplant. The plan and hope was to get approved, get on the list and search for potential live donors. If you wait for a cadaveric donor, it could take years. Several people at church had offered to donate and once in the process, the hospital takes the donors one at a time until there is a show stopper and then it is time to move on to the next donor.

After assessing all the potential donors, seven had my blood type and we started with donor #1. At the moment, we are still with donor #1. I was evaluated in March and approved in April and donor #1 started the evaluation process at the end of April and is still being evaluated. The hope was to by-pass dialysis and jump to the transplant, but that did not happen. Friday the 13th, the decision was made to move to dialysis. By the next Wednesday, I was in the hospital for the day to have surgery to implant two lines in my chest. One line is hooked to an artery in my heart and blood flows out of my body to the dialysis machine while the other line is spliced into my jugular vein for the blood to return to my body.

The Sunday before surgery, I was listening to Mahler most of the day. Specifically, his Resurrection Symphony #2 movement 5 that has these lines:
O glaube, mein Herz, O glaube: es geht dir nichts verloren!
Dein ist, dein, ja dein, was du gestritten!...
Was enstanden ist, das muss vergehen!
Was vergangen, aufersteh'n.
Hör auf zu beben!
Bereite dich zu leben!
---
Believe my heart you have lost nothing.
Everything you have longed for is yours, yes yours....
What has been must go.
What has gone will come again.
Stop trembling!
Prepare to live!
------
It is time to stop trembling and prepare to live, a whole new way.

Week 1

2005-05-29T17:32:00.000-07:00

It has been one week since I started dialysis. My time “in the chair” is Tuesday, Thursday and Saturday from 10:00 am to 2:00 pm. I was anxious the first day. I had had surgery the day before for the access to be implanted into my chest. So, here I was in this clinic of loungers with two tubes dangling out of my chest not sure I was ready to start the next steps, but without any other choice.