E-mail:
reineck@buffalo.edu
Things really started moving early this year (2000). Kurt and I were a 4 antigen match, and after our workups, mine here in Buffalo and his in Fort Worth, the transplant was scheduled for May 16th at the Erie County Medical Center. He was scheduled to go into surgery at 8, with me to follow at 10, so we got to the hospital at 6 A.M. with my mother and Hilde, my wife. My brother left on schedule, but shortly before I was to go to the OR, the surgeons, Dr. Gerbasi and Dr. Leary, came in and said they were not going to do the transplant. My brother had an extra renal artery which did not show up on his MRA, and the surgeons thought that there was too great a chance that the kidney could not be used. It was a terrible disappointment, but it would have been much worse for my brother to lose a kidney for no purpose. I got dressed, and sat in the waiting room with Hilde and my mom until my brother came out of the recovery room. Kurt got a single room, and was in the hospital for four painful days.
We had hoped the transplant would be done before I needed dialysis, but that was not quite the case. A few weeks before the aborted transplant, I had a PermCath put in, and immediately after that, my creatinine leveled off, so I didn't have dialysis until a light treatment the day before the scheduled transplant. Since I would now need to have dialysis, I decided to switch to peritoneal dialysis on the cycler. It worked out pretty well, was much easier on the body than hemo (since fluid levels don't change as much as in a hemo treatment), and is mostly done at night. I highly recommend it. I prepared for a long wait, since I was told that the median wait for my blood type (B) was two years. I felt soreness in my muscles and joints, but in general could carry on with a fairly normal life. I had lots of support from family, friends, bridge partners, and everyone in the University at Buffalo Mathematics Department. This was very helpful, and greatly appreciated.
At my monthly clinic visit in August of this year, I was told by the nephrologist, Dr. Hom, that my name came up when a kidney became available, but I was not at the top of the list, so someone else got it. That suggested that the wait might not be as long as we first thought. Shortly after midnight on Monday, September 18th, the phone rang. We were up late watching the Olympics (with me hooked up to the cycler), and my wife answered. "It's ECMC", she said. My heart pounded as I was told that there was a kidney for me from a healthy 48 year-old who had had a seizure, and that it was a good match. I was also told that I should get there as soon as possible, and that surgery would start at 8 that morning. I called my parents, and left messages on some answering machines at the university where I work. We packed a few things, and headed to ECMC.
We got to the hospital about 1 A.M., and I got an IV inserted and blood drawn. We decided that Hilde should go back home and get some sleep, while I waited at the hospital and tried unsuccessfully to sleep. Dr. Pell, who harvested the kidney from the donor at a suburban Buffalo hospital, said that the kidney would only be out of the donor for an hour, so he expected it to start working immediately. He also said that there wouldn't be much incision pain. Hilde returned at about 7:30, and shortly after she arrived I was given IV Benadryl to ease the side effects of the immunosupressant Agmet. The Benadryl really made me sleepy, and I could barely stay awake to say goodbye to Hilde. I remember being moved onto the operating table, but do not remember the anesthesiologist saying anything before I fell asleep.
I woke up in the surgical ICU with absolutely no pain. Hilde was out making phone calls, but I did see some members of the surgical staff. They told me that the kidney started functioning before I was closed up, and that it was making a lot of urine, so everything looked great. I had a Foley catheter, so all the urine was collected and measured. I also had a central line inserted in my neck to draw bloods and administer IV meds, and a drain to collect excess fluid. I fell back to sleep, and woke up around 7:30. The anesthesiologist did a great job and I did not feel groggy or nauseous. Hilde and I talked for a while, and then she went home. I was monitored frequently that night, and given a morphine pump for pain. During that first night I felt a little discomfort but nothing very bad. I pushed the morphine pump a few times (no rush), more to head off any pain than because of any pain I was experiencing. I was thirsty, and drank a lot of water. I could not fall asleep that night, and had trouble sleeping the whole time in the hospital. This was not surprising, since I was on steroids, and there was some euphoria from the surgery. Actually, being awake at night was not so bad: I watched the Olympics live on Canadian Television.
The next morning I discovered that my creatinine had gone from 9 before the transplant to 4.5 in the 5 A.M. blood test. Later in the morning I had to go for an ultrasound and nuclear flow scan. Since Hilde is pregnant, she could not see me for 24 hours after the flow scan, so she stopped by before I left. The flow scan looked good, and when I got back to the room, I was hungry. I ate a regular lunch less than 24 hours after surgery ended. That afternoon, I was cleared to leave the ICU and go to a regular room (a single, because of the immunosupression). A friend stopped by late that afternoon, before I was moved, and we had a nice conversation. I ate dinner, and I was then moved to the same room my brother had occupied four months earlier. I was given more IV Agmet and some IV Pepcid, and soon I started taking the myriad of pills one needs after a transplant. Again, I had trouble sleeping, and watched the Olympics. The nurse came in every morning at 5 to draw blood, and I was always awake when she arrived.
Wednesday morning I experienced the worst pain of my stay, but it was not the incision or my bladder, but my stomach. Since I had not moved around much and had been eating, gas pressure had built up. The nurse told me that all I needed to do was walk around a bit and release some of the gas, which I did. Dr. Pell was right: there was very little incision pain, even when I was getting out of bed. Hilde visited and we walked around the floor a bit, and later Catalin, a student of mine, stopped by. Because of the immunosupressants, we kept visitors to a minimum, trying to keep it to one a day besides Hilde. I spent some time reading and working on crossword puzzles. I was also given a plastic device to measure lung capacity and encourage me to take deep breaths. Actually, it wasn't too bad with the deep breaths, but any coughing was painful, and remained painful for about 10 days. I was very fortunate not to have to sneeze until 8 days after the surgery, and by then the sneeze caused a little discomfort, but not the searing pain it would have the day after the surgery.
By Thursday my creatinine was down to 1.7. The Foley was starting to bother me if I was not lying down. My bladder felt like I had to go, but I couldn't go with the catheter in me. Hilde and I walked around the floor a bit, but we ended up taking short walks so I could lie back down get the pressure off my bladder. Dr. Venuto said that I might be able to go home Friday, but the urologist, Dr. Pranikov, said that the Foley would stay in until Saturday. I was rooting for Dr. Venuto, but unfortunately, Dr. Pranikov won. My secretary, Janice, visited me that afternoon. She brought some cookies and some papers to sign.
Friday was more of the same, but with the anticipation of losing the Foley at 5 A.M. Saturday, and leaving later that day. Hilde visited, and Don, who was there on Tuesday, came by again. Again I could not sleep, but watched the 100 meter finals live.
Shortly after the 100, the nurse came by to take out the Foley. She warned that it might be painful, but it was not bad at all. Now I had to collect my urine in a bottle so they could continue to monitor the rate of production. I quickly learned that my bladder was about the size of a walnut, and I had to use the bottle every hour or so. I got my final checks from the various doctors during the day, and had my central line removed. At about 2:30, Hilde and I left for home.
I was amazed at how easily everything went in the hospital. I had very little pain, and felt good the whole time. I did not feel drugged (except after 2 IV Benadryl doses). The trouble sleeping was due to the fact that I could not turn my mind off, not because I felt wired. What is even more amazing is how fast I felt really good at home. I walked more than a mile on September 25th, one week after the transplant, and by October 2nd it was 3 or 4 miles. I felt like I should be going back to school and teaching my class. It's a graduate course with only 9 students, so I hope they will let me teach next week. (I am writing this on October 2nd, two weeks after the transplant.) If not, I may try to videotape some lectures.
When I was on dialysis, I had muscle and joint pain. I moved slowly when I sat down or got up, and walking up or down stairs was painful, so I took an elevator, even for one floor (something I would never do before dialysis). One week after the transplant I was taking the stairs again. I had some mysterious rashes on my skin while on dialysis (in fact, I had made an appointment with a dermatologist for September 29th), but they all went away right after the transplant.
So far everything has gone very well. In addition to the MD's mentioned above, I want to thank the NP's, RN's and others who were so helpful before, during, and after the transplant, especially Kris, Sue, Evelyn, Karen, and the PD nurses Donna, Linda, and Vanessa.
After the tranplant I learned that I was the third person to be offered the kidney I received. The first person it was offered to had been on the list for two years, but declined because it was not a very good match. The second person declined becasue she had plans for the following week. It turned out she made the right choice. She was one of six people to get a new kidney at ECMC the weekend after my transplant. There was also a transplant the day before and the day after mine. It's great to see so much organ donation in Western New York.
E-mail:
reineck@buffalo.edu