KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

Questions as the Time Approaches

Yesterday, I contacted a recent transplant recipient, and was informed about the issues she had faced: possible rejection, weight gain, mood swings, and hair emerging in unexpected places. However, she said that if she were faced with the decision of having a transplant again, she would not hesitate even though her dialysis, like mine, has been very successful. I am also speaking regularly with my donor who will be flying to Florida a week before the surgery, and who is only upset that there was such a delay in clearing her as a donor and scheduling the surgery. She indicates she would have preferred June, but she is gung ho to get the surgery done so that she can be recovered for the Christmas holidays.

I also searched the Internet and was disappointed to find a lot of outdated information and very little in the way of real person perspective. I did find a highly priced book offered which could provide me some insight, but I rejected this out of hand. It also made me decide to undertake this effort so future transplant recipients will not have to be so clueless. People have asked me how I feel about the offer of a kidney, and I reply that I cannot put it into words, other than to say it is the single most selfless act I have ever witnessed, and that I am amazed by the offer and the enthusiasm indicated by this former client and friend. I know that my chances for long term success are far greater with a live donor, especially one which exceeds most family matches for compatibility. Many people have referred to this as a miracle, and I cannot disagree.

A judge asked, in court, yesterday who was the donor for my kidney transplant and, when I explained it was a former client who had contacted me, he was amazed, saying that sometimes attorneys do get compensated for good works. It was a comment indicative of the reactions I have received from friends, family, and even doctors. My urologist said it was a first for him, and his nurse, whom I have come to rely on heavily for information, cried. At the Kidney Center, the nurses who have worked with me in the peritoneal process indicated that a non-family donor was almost unheard of.

Today, another client - who owns a newspaper - was visiting me and had some questions about the process and the donor, so I telephoned my donor and asked permission to provide her name. She not only agreed, but spoke to the newspaper reporter-publisher-owner (I believe I mentioned it is a rural area). I do not know what they discussed, but look forward to seeing the article. Dialysis continues to go well. I am again hooked up as I write, draining in preparation for refilling.

What are my feelings as I sit and type today? Excited, definitely! Scared, of course! Thankful, without question! Clueless, basically.

There are so many questions which arise in your mind, such as the following, in no particular order:

I will attempt to fill in the answer to these questions, and others that come up, as I obtain educated guesses, and then provide real life answers after the surgery. As kidney transplants received a great deal of attention thanks to San Antonio Spurs’ player Sean Elliott receiving a kidney from his brother, I sent an E-Mail to Sean to congratulate him, to inform him of my upcoming surgery, and to ask for any advice he could offer, having just gone through the procedure. I will probably hear nothing back, but I am so anxious for information that I will grasp at any straw. Hopefully, there will be some additional information available from some of my feelers, and I will, of course, add anything received to this journal for - hopefully - the education of any who might choose to read it.

I saw on Sports Center on ESPN last night that Sean Elliott has left the hospital, and still no response. I did not really expect one, and am not surprised or disappointed, as, of course, he is a celebrity, and received countless messages from the average people out there.

Today, I go to my urologist, and I am taking my questions with me. Hopefully, I can get at least some answers. Also, I have heard from my transplant coordinator at Shands, and she is going to FAX me responses to my questions. I will share that information in this journal as soon as it is received. It also struck me this morning that I have fewer than 100 exchanges to go, and this appeared to be a milestone, at least to me.

I have received information about the upcoming surgery and its recovery period from two sources since yesterday, and I want to share that information while it is fresh.

Somehow, the more information that I receive, the better I feel. Fear of the unknown is the greatest fear I feel that I face, and the possibility of a relatively uneventful process is very satisfactory, of course.

I just spoke to a woman who received a kidney transplant three weeks ago from her daughter. Her information was most encouraging. She is already driving, and the pain has disappeared. She has some swelling from the prednisone, but this is expected to go away within six weeks. Her daughter, who was her donor, went back to work as a teacher and coach this week, and coached in a volleyball jamboree last night. I immediately telephoned my donor to give that good information, and she was excited as well. Perhaps the horror stories that I have been imagining will turn out to be just that - stories. It is making it easier to face the surgery with a positive attitude, at least. People continue to be amazed that a former client - albeit a distant friend - would offer me a kidney.

I cannot explain it at all. I cannot imagine a more significant or personal gift between non-family members. I think on this on a daily basis, and am even more amazed as the time draws closer. I brought two boxes of the 4.25 solution to my office for dialysis today and realized that these are the last two boxes I will need, as this is Tuesday, August 31, 1999, two weeks from the scheduled surgery. I will only be in the office for eight more working days before surgery. That really brings it home.

As I sit here typing on my computer while performing my dialysis, I am forced to reflect on my fears. Dale Carnegie one wrote a book in which he suggested that you write down your fears and write down what is the worst that can happen. He then said to write down what you can do to avoid the worst possible consequences. This has worked for me in the past when there was something to be afraid of. However, as I look at the upcoming surgery, I face the following:

WHAT IS MY FEAR?
This is a complicated, albeit, common surgery, and I do not really understand it or the possible ramifications.

WHAT IS THE WORST THAT CAN HAPPEN?

  1. I can die. Period. This is, after all, major surgery.
  2. My body can reject the kidney, despite the match and the medications available. I will have to return to dialysis.
  3. My donor can change her mind. It could happen, although I do not believe it will. I will have to stay on dialysis.

WHAT CAN I DO?

  1. Learn more about the procedure and the risks to better understand that there is a minimal risk of serious complications, and to understand that there is a minimal risk of rejection given the current state of medical knowledge.
  2. Keep a positive mental attitude and have faith in my surgical team and my donor. This is possible with the absolute support of friends and family, especially family. They have been wonderful, and I am not at all sure that I could have gone through dialysis without them and their support.
  3. Find a positive way to deal with my fears and lack of knowledge. Find people who have gone through this and talk to them; ask my transplant coordinator questions; ask my doctor questions; use the Internet to seek further information.

As you can see, writing this journal is far from a selfless act. It allows me to channel my thoughts, and gives me an outlet for my feelings. Therefore, I am once again thankful to my wife for suggesting this outlet. I only hope that it can do as much for anyone who reads it as it is for me as I write it.

I am still wearing my pager which is connected to Shands, and suddenly wonder why. Am I still on the list and liable to get a call indicating the availability of a cadaver kidney? Just another question that I need an answer to, and one which I will share with my journal as soon as I receive it. Boy, that was quick! My kidney transplant coordinator at Shands returned my telephone call within a few minutes of my leaving her a voice mail message. She has been a rock for me, especially since I was informed about the upcoming surgery. I only hope that I have not been too big a pest for her. In any event, the answer is that I am still on the list, although it is highly unlikely that there will be a match within the next ten days. If I get the call, as she indicated on the telephone, I will be faced with a major decision. I believe that I will discuss this one with my wife this evening, in the event we are faced with that decision. And that brings up a major point: rely on other people, and share your thoughts and concerns with them. This is not something a person should attempt solely on his or her own. The more support you can receive, the better off you are.

We are planning a big Labor Day party on Monday, and will have an extended family gathering. It will probably be the last big gathering before the surgery, so I look forward to it. Also, I will be attending my first University of Florida football game since going on dialysis this Saturday. My wife and I have decided that -- being a 6:00 p.m. game -- I should use the lighter solutions for my morning and noon exchanges on Saturday, and my one stronger solution bag for the day for my late afternoon exchange. Since I normally begin at 5:00 p.m., it will be earlier than usual, and the greater delay will exist between it and my post-game exchange. Therefore, in order to avoid as much bleeding of the liquid into my system as possible, we felt I should use the stronger solution for the longer period of time.

We also have tickets for a play on Sunday, but I am going to exchange them for the following Sunday, the day before I am admitted to Shands. This will give us something to take our minds off of the surgery, and will be a way to relax the day before I enter the hospital. Hopefully, it will work.

Today was my last visit, as a patient, at the Ocala Regional Kidney Center. I gave blood - a continuous part of my life - and they generally checked me out. They were concerned with the exit site, as I had damaged it a week or so ago when the tape anchoring it slipped and the tube pulled against the skin, ripping it slightly. While there was no indication that there was any infection, they gave me a shot to put into my dialysis bag, as well as giving me instructions on how to better treat the exit site to avoid any possibility of infection. Infection, at this point, would be a disaster as far as the scheduled surgery is concerned. Before I go to bed, I am to take a piece of gauze, soak it in salt water, squeeze it out, and wrap it around the exit site. This is to be covered and removed in the morning, with a cleaning and new protective wrap applied. Hopefully, this will be sufficient.

The two nurses also tested me on my knowledge of procedures, and reminded, reinforced, and basically lectured me on the importance of following all directions after the surgery to the letter. Any deviation can affect the new kidney and cause problems. I believe that I got the message. They were also very positive about the procedure I am about to undergo, and encouraged me on this, my journal.

I gave them a copy of the journal to date, and they reminded me to send updates as they become available. Also, yesterday, I found a wonderful Web Site, http://www.transweb.org/. It includes personal stories about transplants which I found fascinating, and which I recommend most highly. I hope to tie this journal to that site upon its completion.

Today, I heard back from a kidney recipient in England whom I met through her web site on the Internet. Her story was very personal, very well told, and very, very English in tone and vocabulary. I wrote back by E-Mail, and told her about my plans for this journal. Hopefully, this will be of interest to her. Her name is Claire Ann Stafford, and her Web Site is found at http://freespace.virgin.net/claire.stafford/entrance.html. I highly recommend it.

By the way, wrapping the saltwater encrusted piece of gauze around my exit site was easier said than done. It involved getting my hands wet and, while trying to hold the gauze in place, it was difficult to get the tape to stick holding it in place. Perhaps in the few days I have left to attempt this, I will become more adept, as I felt like a complete klutz last night.

One week to go. Wow! My donor flies in today, and we will be getting together later in the week. Over the weekend, my wife and I went to a football game between our University of Florida Gators and the Western Michigan Broncos. The Gators won, but looked like they had eleven new starters on defense, which they did. They only have two weeks to get ready for the number two team in the country, Tennessee.

Sunday, we went to a volleyball game between the Gators and Nebraska, which is ranked ahead of the Gators. There were two good games, which were split, and then Nebraska spanked the Gators in the last two games to wrap it up. However, the Gators rose from eighth to sixth in the latest poll.

Monday, Labor Day, we had 20 relatives for lunch, and I cooked hotdogs and hamburgers, the true American holiday fare. It was loud, boisterous, and crazy. I think it was just what I needed as the surgery comes closer.

It all appears more real today than it did last week. More excitement, and more fear. Obviously, I have never gone through anything like this before. I had a hernia repaired when I was a few months old, but really do not remember much, except the ether. Fortunately, that is no longer used. I had my adenoids and tonsils out as a child, and, again the ether is the primary memory. I had a cyst removed once, and the surgery to prepare me for dialysis. Other than repair of a cut on my wrist where I fell on a glass and broke it, which is it for me surgically. This is a big one. I know the statistics; I have spoken to many people; I have talked to doctors, and, I have done research. I am confident and excited, but - hey - this is major surgery, so there is just a little edge to the thinking process. It will be interesting to see how I react as I get even closer. I will report.

I spoke to my brother today, and I can report on his latest installment of the Mr. Hyde of kidney failure to my Dr. Jekyll. Without notifying any of the family, he went back to the hospital in Gainesville for yet another removal of, and replacement of, an access tube. At least he went to a new surgeon at another hospital, Alachua General Hospital. The surgeon told him that it was clear that the second access tube which had been installed was, yet again, the wrong tube and, yet again, in the wrong place. After my brother returned home, he was in great pain - far more than with either of the earlier surgeries for the same thing. He went back to Alachua General, and was admitted with peritonitis. The on-call nurse for dialysis explained that they were using a new anti-bacterial cleaning agent, and proceeded to inject this product into his bag. When dialysis started, he said the pain was immediate and overwhelming.

He knocked the nurse out of the way and began flushing his system with clean liquid until the pain subsided. He then checked the product and found it was for external use only, and was not to be used on the face because it could cause deafness or blindness. The nurse later apologized and explained that she saw only three peritoneal dialysis patients a year, and was unfamiliar with the procedures. Also, the hospital refused to provide his required medications, and when his wife brought them from home, the nurse attempted to confiscate them. That is when he checked himself out of the hospital against medical advice, believing that the hospital and its staff were now doing more damage than good.

So, once again, thank you Dr. Neustein for being not only caring but extremely competent. And thank you Dr. Locay for providing care and competence over the long term of this process. I knew you were good, but I did not realize how good until my brother attempted the same process with other physicians.

Yesterday, an article appeared in a local newspaper, the Newscaster, about my upcoming surgery and about my donor. While the surgery and the gift that Diane is giving me were mentioned, the focus was on the fact that the Yankeetown water might have caused my kidney stones and kidney failure, or might have contributed to the same. I was disappointed and upset; my wife was outraged. I have already sent a letter to the editor, and have received a reply indicating that there will be an in-depth interview with Diane in the future, and that there will be another article. We will see.

On the good side, Diane flew in late Tuesday from Maine and she and her mother, her brother and his wife, joined myself and my wife for dinner at the best restaurant in the area. It was a somewhat amazing evening, as people came by to congratulate me on the upcoming surgery and were amazed when I introduced Diane as “my donor.” Her mother asked if, after the surgery, we will be somewhat related, and I guess we will. Kidneys and surgery were never the topic of conversation for long. Families - especially children - dominated the conversation, and it was light and lively for several hours. It made me feel much better about Diane’s decision, as she was totally enthusiastic about the upcoming procedure. She is a truly unbelievable and unique person.

It is Friday, my last day at work before the scheduled surgery. I slept really, really well last night, and feel very confident about the entire procedure this morning. I don’t understand why I feel this way, but am very glad. It just feels right!

High school football tonight, at my wife’s high school. As an Assistant Principal, she is on duty. We have agreed that, if it rains, I will simply wait in the car. There is no reason to take a chance on a cold or an infection at this point. Okay, to that extent, I may be a little uptight, but I consider that more common sense than fear.

[Kelly] I missed writing on Saturday for some very wonderful reasons. Our daughter and her husband met us at the Dunnellon High School football game Friday night, and brought our granddaughter, Kelly. She came home and spent the night with us. Saturday morning, we played on the computer, hugged each other, and had a wonderful time. Since I will not be able to roughhouse with her for a while after the surgery, it was a very important time for me. Oh, the Tigers won the football game.

On Saturday, we went to the Gator game, which was a blowout, as expected. Next week is the first huge game of the Gator season, but I am more than happy to miss it.

It is now Sunday, and there was some trepidation when I woke up. However, as I have gotten up this morning, I am more positive once again. I am hooked up to my dialysis bags as I write, and there are fewer than ten exchanges remaining. Unbelievable. I feel good, other than my Florida sinuses, which seem to be a problem regardless of what medications I take. I hope that they have something in the hospital so that I do not cough after the surgery. That does not seem like a good idea.

I have my chores for the morning, packing, burning the empty boxes which held my dialysis bags, and preparing the swimming pool for our absence. Wow, but it seems so real this morning. One play, some Sunday night football, and Diane and I are in the hospital.

So long for now. Wish me luck! I will report when I can get to my computer, and will take notes in the meantime.

Sunday, we went to the play “As Bees in Honey Drown.” Very strange, but I enjoyed it. It was what is known as a truly black comedy.

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