When Cups Refuse to Pass
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
