Thursday, July 28, 2005

Waiting

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.

Sunday, July 24, 2005

Biomimicry

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.

Tuesday, July 19, 2005

Misc

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.

Sunday, July 17, 2005

Spending Saturday

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.

Thursday, July 14, 2005

When You’re Having Fun

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.

Tuesday, July 12, 2005

Juxtaposition

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.

Saturday, July 09, 2005

Another Heavy Hearted Friend

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.

Thursday, July 07, 2005

How Do You Donate?

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.

Monday, July 04, 2005

About the Clinic



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"

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.