For most of my life, my personal medical history was characterized by good health. If I got a cold once a year, that was frequent for me. It was extremely rare for me to miss work because of illness. Not only was my life characterized by good health, the same could be said of my family history as well. There is no history of kidney disease in my family. I even had a grandmother who died at the age of 102 literally of old age. In December 1996 I got sick. At first I thought that it was just some virus. A virus is always what you think that you have when you are sick and you do not know what is wrong. If you go to the doctor and he tells you that you have a virus, then this means that he doesn’t know either. I finally got where I was having trouble breathing. Just walking left me gasping for breath. No matter how much you may dislike going to a doctor, if you can’t breathe, you are going to do something. I got my wife to get me an appointment. The doctor immediately sent me to the Diagnostic Center for blood tests. There was no waiting around a couple of days for the results to come back.
When they checked the blood gasses, the technician told me that if the numbers were above a certain level, then they did not let you leave until they called the doctor. The doctor said to call the rescue squad and to send me straight to the emergency room. I didn’t even get to collect $200 for passing go. By now, I was getting increasingly alarmed. I was beginning to imagine all sorts of things but kidney failure just wasn’t one of them. After the usual things that they do in an ER, I was sent up to a room. A little while later, my doctor came by and said that he thought that I had kidney failure. My wife and I were both in total shock. Never in my life did I even consider that I would have kidney failure and a kidney transplant. My doctor told me that a nephrologist would be coming by to see me. At that point, I probably did not even know what a nephrologist is. Just the word nephrologist sounded ominous and frightening.
I recognized that my life had just changed forever. I just didn’t know how much it would change. I was started on dialysis that night. One of the first questions that I asked was would I be eligible for a transplant. My doctor said that since there was nothing else wrong with me except renal failure, that I would be an excellent candidate for a transplant. For the next eighteen months, I went to dialysis three days a week for four hours of dialysis each treatment. Dialysis is better than the alternative, dying, but dialysis still sucks. There is really no other way to describe it. The best way to characterize it is to say that I survived dialysis and all the things that go with it; feeling poorly, the diet, being thirsty, having my blood pressure drop, passing out, and having my graft clot.
On Friday, June 26, 1998, I got up and went to dialysis as usual. I did not even have a hint that this would be my last day of dialysis at the Fayetteville Kidney Center. Dialysis that day was very ordinary with nothing bad happening. After dialysis, I went home and had lunch, as is my routine. About 1:00 p.m., my stepson called and said that Duke was on the line. They had already told him that they had me a kidney. A couple of minutes later the phone rang. It was Leslie Hicks, one of the transplant coordinators at Duke. She said that they had found a kidney for me and then she asked me if I still wanted it. I told her of course I did. I suppose that there are people who change their minds and just say no. I can not imagine anyone doing so. Her next question was did I have a cold or anything like that. I told her no. She said that she would notify them back through the proper channels and that she would call me back and let me know when to be at Duke. A few minutes later, my wife and son came home. I met them at the door. I was so excited that I could hardly talk. I had been waiting for this day for a year and a half. My wife looked at me and immediately knew that something had happened. I finally was able to tell her that Duke had called and that they had a kidney for me. They were as excited as I was. I knew that my life was about to change. I was totally unprepared for how much it would be altered.
After a very long afternoon of anticipation, Duke finally called back about seven that evening. She said that my kidney was scheduled to arrive at the Raleigh-Durham airport at seven the next morning and that they wanted me to be at the emergency room before six. They literally pack kidneys in an Igloo cooler and send them by air to the transplant center. There is an agreement with all airlines that they will transport any organ on any flight when asked. They deliver it directly to the airplane and then someone meets the plane to pick it up at its destination.
We decided that it made more sense to go on up to Durham that night rather than having to get up at three in the morning. By eight that night, we were off to Durham and my new life. A little before six the next morning, we arrived at the emergency room at Duke. With a minimum amount of paperwork, especially for a hospital, I was put in a room in the emergency room. For the next several hours, it was mostly hurry up and wait. I was too excited to be scared even though this is considered to be a major operation. The only thing that was even a little bit scary was when they put an IV in my neck as well as my arm. They said that this was so that they could give me blood in a hurry if it was needed. They also pointed out that this was highly unlikely and that they certainly did not expect to do this. The other thing that they did was cross match the kidney. This means that they check to make sure that I had not built up any antibodies to the kidney, which I didn’t. Finally, about three that afternoon, someone took me up to pre-op. The last thing that I remember is being rolled out the door and the nurse pointing out the door to the operating room. The next thing that I remember is waking up in recovery. I have no memory whatsoever of the operating room. I don’t even remember getting there or how long that I was in the operating room. The only thing that I recall from that night is talking to my wife in recovery. While I was in the operating room, some pipes broke in Intensive Care. I ended up staying in recovery until the next afternoon when they moved me to a room.
Figure 1
A kidney transplant operation is a pretty simple operation at least it is for a transplant operation. The transplant surgeon makes an incision and literally just places it inside you. He or she (one of my transplant surgeons was a woman) connects the kidney to an artery and to a vein. The new kidney may begin working at this point and begin putting out urine. Then the urethra is connected to the bladder and the surgeon sews you back up. (See Figure 1) Now the stressful part of the whole process begins. This is the waiting period to see if the kidney is going to work and continue to work. Some kidneys begin to work immediately while others may take up to a month. In my case, my kidney started working immediately although I did have two rejection episodes. The first two months is the time of the greatest risk. My very worse thought during this period was that my kidney could reject and I would have to go back to dialysis. I tried not to even think about this as a possibility.
Due to the fact there is a lot of misinformation in the news concerning kidney selection, I think that it is useful to briefly mention the kidney selection process. Once the transplant team approves a candidate for a transplant, you are placed on a national list maintained by the United Network of Organ Sharing (UNOS). The Carolina Organ Procurement Agency (COPA) coordinates with UNOS to provide organs in our area. Kidneys are selected based on three criteria. The first is blood type (A, O, B, or AB). In my case, I am A+. This type has the shortest waiting list as far as waiting time is concerned. This is because A+ patients can accept both A+ and O+ while O+ can accept O+ only. The second criteria are six genetic markers called antigens. Each of us has genetic markers that exist on the surface of white blood cells. These are called human leukocyte antigens. Each of us inherits three antigens from our father and three from our mother for a total of six. The antigens of a donor are compared to those of the possible recipient. The more antigens that match, the more compatible the two tissues are. Figure 2 gives an example where each number represents an antigen. Thus if a family member is the donor as a brother or sister, a match of at least three antigens is pretty likely. If the donor is not related to the recipient, a match is still possible but not as likely. The purpose of the cross match is to make sure that no antibodies have formed that would destroy the antigens on the donor kidney. The third criterion is the length of waiting time. If a transplant candidate matches all six antigens, then this person has the first right to the kidney regardless of time on the waiting list. This is what happened in my case, I matched all six antigens. This is called an identical match. They told me at Duke that they see one of these about once every two years. This means that when UNOS ran their computer, of the 40,000 people on the waiting list, my name came up first over everybody in the United States. This is why I got a kidney in less than a year, which is very fast for a kidney.
Figure 2
The first week, with one important exception, went great; at least it did until Friday. My new kidney started working immediately. My urine output, which they carefully measured, was good all week. Only a dialysis patient can get excited about being able to go to the bathroom. My numbers from my blood work improved each day. The one exception was that on Monday, my stomach messed up. It started off as more of an irritating pain, which got steadily worse. By early afternoon, it was very severe. A nurse came in and put a very large tube down my throat all the way to my stomach. This was very uncomfortable but at that point, I would have agreed to anything to get rid of the pain. After they pumped out my stomach, I immediately felt better. Unfortunately for me, they left the tube in my throat. A nurse came in and wanted me to swallow some pills. I asked her if she had noticed that I had this large tube in my throat. She finally crushed them up and poured them down the tube. By the next morning, I was very anxious to get this tube out of my throat. One of the doctors came in and did write orders to remove the tube. Later that morning, I got up and walked down the hall for the first time. On Wednesday, I started eating solid food again. Until this time, I had been on IVs only. On Thursday, the transplant surgeons came in and told me that everything was going so well that they were going to release me the next day. I was so excited that I don’t think I slept at all that night. I was doing well and I was going home.
It was time for Murphy’s Law, which says that if anything can go wrong, it will. About 8 o’clock, Dr. McCann, the head transplant surgeon, literally stuck his head in the door. He said that my creatinine was up and that I might be rejecting. Creatinine is a waste product from meat and from using muscles. This is the key number the doctors look at to determine if the kidney is functioning. My mood went from extreme elation to doom and gloom in about 30 seconds. I told him that I guess that meant that I wasn’t going home. He said that yes I wasn’t going home. With great regret, I called my wife over at the motel and told her. I think that it was more difficult for her than it was for me. The next day, which happened to be the 4th of July, they did a biopsy. This is one of the medical procedures that sounds a whole lot worse that it turns our to be in reality. They make a very small cut and then they stick what looks like a foot long needle down inside you to the kidney. Then they fire a small device that sounds like a cap pistol. This removes a small section of the kidney for analysis. The biopsy indicated that not only was I having a rejection episode but that it was also forming small clots in the kidney. This was obviously very frightening. I could very well have lost the kidney. I asked Dr. McCann if the kidney would recover from the clotting. He gave me some nebulous answer about there was still a lot that we don’t understand. I got the impression that he really didn’t think that it would recover. Well, it is like Gomer Pyle used to say: surprise! Surprise! It did recover.
While the first week went very well, the second week was terrible. Now, I knew for sure that I was having a rejection episode and that there was a very real possibility that I could still lose the kidney. There is over an 80% success rate with kidney transplants today. However, this also means that there are still some transplants that fail. There were several things that happened that made this a very tough week. The first and probably the most important, was the stress of the uncertainty of the kidney. The creatinine did level off after a couple of days but it was very slow to start dropping again. It really didn’t start dropping again until after I got home. Second, as the week progressed, I started to feel worse. A hematocrit level down in the twenties explained that. I was getting very anemic. A couple units of blood helped a lot. The drugs they were giving me to stop the rejection certainly did not help me feel any better but they did stop the rejection. I also had an allergic reaction to a sulfa drug I was taking. I started breaking out in a rash from it. They took me off that drug and the rash cleared up. That turned out to be a minor annoyance only. Since my kidney wasn’t working properly, I had one more dialysis treatment. My graft in my arm quit working when I had the transplant and it could therefore, no longer be used. Consequently, a nephrologist put a temporary access in my leg. This turned out to be a major aggravation. It would be difficult for me to agree to that again.
The next obvious question is how did they stop the rejection. There are various drugs that they can give you to help reverse the process. I was given two different drugs, both of which were given intravenously. The first one I think was called solu-medrol. I was given this for three days with no obvious side effects. The creatinine stopped rising but it didn’t start dropping either. Therefore, they started me on the second drug, which was called OKT3. This drug, according to my doctors, directly attacks and destroys the antibodies. The antibodies were trying to destroy my kidney. OKT3 is a very strong drug with some potentially serious side effects. One of these is that it can cause pulmonary edema; that is your lungs fill up with fluid. This was the primary reason that I had dialysis at Duke. They did not want any excess fluid in my system. Fortunately, in my case, this did not occur. The other side effect was that it gave me fever and chills. My doctor said that this was good because this meant that it was working. I would alternate between being very hot to freezing. One time, the nurse came in and put three or four blankets on me. The nurse that night was terrific. She came in frequently to check on me and take my vitals to make sure that I was okay. Other than the fever and chills, I survived the night with no serious problems.
On Thursday morning, the transplant surgeons came in as usual. They were always optimistic regardless of how things were going. It was obvious that the kidney was still working. My output remained reasonably good all week. Unfortunately, it was also apparent that the kidney was not filtering as well as it should. The transplant surgeons told me that morning that they were planning to release me on Saturday. I would have been more excited if the kidney had been working properly. The nephrologists came in a little while later. While the surgeons were always optimistic, the nephrologists were always very pessimistic. This was very disconcerting to me. I finally told the nephrologists that they needed to get together with the surgeons and get their stories on the same message before they came in to see me.
By Friday, it was now obvious to me that the doctors had done all that they could do and that it was now up to my kidney and me. Since the kidney was still not filtering properly, there was still a possibility that I would need dialysis after I got home. The problem was that I still did not have an access. The nephrologists wanted to put a temporary access back in leg. I think that I shocked them when I told them that I was not going to do that. I told them that I wanted a catheter put in my shoulder. They said that the problem was that the surgeons were unavailable because they were doing a transplant. I already knew that. When they were doing a transplant, they did not come by my room. I had not seen them that morning. While we were still having this debate, Dr. McCann walked in and announced that he had arranged to have a catheter put in down at radiology. I was elated. I told him that this was certainly all right with me. The nephrologists didn’t say anything. Nobody questioned Dr. McCann. As it turned out, I didn’t even need the catheter. My kidney started working again and I never had dialysis again.
Finally, the day for me to go home did indeed come. It was Saturday July 11, 1998. I had survived my first two weeks. At that point, survival is a good description of how I felt. It was difficult to get too excited for two reasons. First, I had been ecstatic before and then didn’t get to leave. I was very anxious to see my numbers that morning. The second reason was that my kidney was still not working as well as it should. There was still a very real possibility that my kidney could still fail. Two things occurred that day that helped me tremendously. First, Dr. Tuttle, one of the transplant surgeons, came in to see me. I asked her if she thought that the kidney could still come back. The reason I asked her this was that although he didn’t say so directly, Dr.McCann gave me the impression that he didn’t think that it would. Dr. Tuttle told me that if she didn’t think that it could still work that I would be down at the operating room having it removed. This did wonders for my mood and motivation. The second reason was just knowing that going home was going to get me out of what had become a very stressful situation. This had to have a positive effect on my kidney. When I came back to the clinic at Duke South on Monday, I told Dr. Smith that this was just a gut feeling but my kidney had made it and that it was now working. His response was that sometimes gut feelings turn out to be correct. When my numbers came back, my creatinine was down significantly. It in fact it was so good that dialysis that had been scheduled at the Fayetteville Kidney Center was cancelled.
Almost everything did go smoothly that morning and I did go home. The nurses came and gave me my two IVs that I was still receiving. The supplies that I was taking home were delivered. My wife arrived to take me home. I think she was even more excited than I was to see me come home. There was only one problem and this turned out to be more of a minor aggravation than anything else. There was some sort of problem on my discharge orders that a resident finally straighten out. It always seems like whenever you are being discharged from the hospital, it always takes a couple of hours longer than you think it should. Finally, early that afternoon, we finally left Duke for home. I thought that the worse was over. There would not be a week as bad as that week but there were still a lot of tough times to come.
The next couple of weeks went relatively well. My creatinine level did indeed start dropping finally. The stress as to whether the kidney was going to work rapidly diminished. A nurse from a home health agency came every day and gave me an IV of OKT3 and an IV of ganciclovir. I was beginning to feel much better and I was getting stronger each day. I didn’t need dialysis anymore, which was wonderful. After being on dialysis for a year and one half, it almost felt strange not to get up and go to dialysis three mornings a week. On the first Monday in August, I went over to Out Patient at Cape Fear Valley for blood work. They would then fax the results to Duke. About one that afternoon, Dr. Smith called and said that my creatinine was up and I needed to get back to Duke that afternoon. He said that I should go directly to the ER where they would be expecting me. This meant that I was going back to the hospital at least for a few days.
Compared to my first time at Duke, this time was pretty uneventful. Dr. Smith did a biopsy the next day. It did indeed indicate that I was having another rejection episode, so they put me back on solu-medrol again. The immunosuppressive drugs caused the rejection this time. The doctors had taken me off the cyclosporin because of my previous problems. I was only taking Cellcept, which was apparently, not enough. One of the problems with immunosuppressive drugs is that if you don’t take enough, you reject the kidney. If you take too much, it can destroy the kidney. There is no way to know what is the correct amount other than partly based on the experience of the doctors and partly on trial and error. Fortunately for me, this time, the creatinine did level off quickly and began to decline again. They then started me on a new immunosuppressive, Prograf. The week went by with no other problems and I went home.
There were still two more problems to overcome. In September, I went up to Duke for a regular checkup. While I was there, they removed the catheter that I never used. A couple of days later, I woke up one morning feeling really terrible. I called Dr. Smith and he had me come back to Duke that morning. He thought that I probably had a blood infection from where they took the catheter out so it was back to Duke North again. It turned out that I had both a blood infection and the CMV virus. Viruses are potentially very serious for a transplant patient. The same antibodies that attack the kidney and cause rejection also destroy viruses. Therefore, when the immune system is suppressed with drugs, the transplant patient is also very vulnerable to infections. The CMV virus is a virus in the herpes family and it is very common. My kidney was positive for the CMV virus and I was negative. Therefore, there was a high probability that I would get the virus too and become sick. To prevent this, I was given ganciclovir by means of an IV for a month and then I got it in a pill form. Unfortunately for me, I still got the virus anyway. I primarily just felt terrible. After a few days at Duke, I went home. I had IVs at home again and continued to take it in its oral form until March. In October, I started getting a low-grade fever and started feeling terrible again. I thought that perhaps that I had the CMV virus again because I felt about the same way. Dr. Smith said that the immunosuppressive drugs were probably too high. After he reduced the amount, I gradually started feeling better. One other thing happened which I thought to be sort of weird. My hair almost quit growing and lost all of its natural curl. After having naturally curly hair all my life, it felt very strange to have straight hair. Dr. Smith said that this was another side effect of Prograf. After about four months, my hair started growing again; regained its natural curl; and even lost some of the gray color.
Since Thanksgiving, I have gradually improved in the way I feel. Today, I feel about as close to normal as I will ever feel. I still get tired easy but even that has gotten a lot better. I still have hand tremors due to the Prograf. I still only sleep about five or six hours a night which is very common for transplant patients. There are some things that I will always have to deal with. I will always have to take immunosuppressive drugs with their potential side effects. These drugs are also very expensive. There will always be a potential for serious infections due to the suppression of my immune system. However, due to the fact that I now have a healthy kidney makes everything worth it today.
This brings me to a very important question: "did I make the right decision to have a transplant?" There were many times that I seriously questioned whether I had made the right decision, especially when I was feeling terrible. My wife said there were many times when she questioned this as well. In fact, there were probably times when she was absolutely sure that I had made the wrong choice. The whole ordeal certainly was much more demanding than I could have ever imagined. The information that they give you before the transplant states that you should be able to go back to work in four to six weeks. Six weeks after my transplant, I was still in the hospital at Duke. There was no way that I could have gone back to work at that point even part-time. In spite of all the difficult times that I endured, I am now healthy again with a fully functional kidney. I no longer have to go to dialysis three days a week with all the problems that go along with dialysis. Today, I certainly think that I made the right decision when I decided to go ahead and to have a transplant.
The next obvious question is: "would I do this again?" This is more than just a hypothetical question. Kidney transplants last on an average of around ten years. Therefore, it is likely that I may face this question in the future. There were times during the last year that I actually said that I would not have a transplant again.
On one hand, I would want to get off dialysis. But then, I would now know what I would be facing. I would be very reluctant to do all of this twice. Of course by the time this occurs, I may be too old and not be given this option again. Any attempt to answer this question is actually just speculation. It will depend totally on the situation at the time as well as how my wife would feel at the time. In any event, it will be a difficult decision and would require a lot of serious thought.
The last obvious question is: "would I recommend this to another dialysis patient?" I would first suggest that they consider both the positive and negative aspects of this decision. The positive part is that you get a healthy kidney with no dialysis. The negative aspects are all of the potential problems and possible side effects that may occur. This is actually a decision that only the patient can make based on his or her own situation and desires. It should also be a decision that should only be made after consultation with their family especially their spouse. A transplant involves the whole family. The transplant patient will also need their support and help just to make it through the ordeal. Therefore, my answer is the end result is worth it but you should make sure that you are prepared to do whatever is necessary to survive the ordeal in order to get well again.
I can not end this without a special mention and thanks to the many, many people who took care of me and made my survival possible. This includes the staff at Cape Fear Valley with a special mention to everyone at nephrology, the doctors at Fayetteville Nephrology, to everyone at the Fayetteville Kidney Center both staff and patients, and to everyone at Duke. A very special thanks goes to my family with a very special thanks to my wife. She lived with this 24 hours a day just like I did.
For anyone who is waiting on a transplant, each transplant is unique, that is each transplant has its own unique combination of problems. If you have a transplant, you may not have any of the problems that I had or you may have problems that I did not encounter. My doctor at Duke admitted that most transplants don’t have as many problems as I had. However, I survived and today I am healthy again.
Finally, this is not the end of the story. This is the never-ending story. It is something that I will live with for the rest of my life.
Good Bye!!!