The Tissot Family Kidney Transplant Stories
The purpose of this home page is to tell our family stories in the hope that they will answer questions, calm fears, and encourage living donor related kidney transplants. Our two family transplants have been completely successful and have enriched the lives of each of the participants. Our transplants have heightened the love that we have for each other. We want to encourage families that may be thinking about transplants such as ours by telling them about the wonderful, fulfilling experience that we have had. Each story is different, and is written with the personal perspective of the author. Some things that were important to one were not as important to another. But those who are interested enough to read all our stories will get a good idea of what living donor related transplants are all about.
It is now October 1998, and we have celebrated the fifth anniversary of our two successful living donor related kidney transplants. The transplants took place in 1993 at the California Pacific Medical Center in San Francisco. They involved father Gene, mother Millie and sons Craig and Brian. Millie had suffered kidney failure since 1986, which required that she undergo dialysis in 1987 at the age of 57. Brian likewise had kidney failure and was required to go on dialysis in 1992 at the age of 35.
Gene and Craig had excellent kidneys. As a family, we had thought that when Brian went on dialysis his older brother Craig would donate a kidney to him. Initial tests, however determined that Craig and Brian had different blood types. As it turned out, Gene and Brian had the same blood type, as did Millie and Craig. Gene, at age 65, thought he was too old to donate a kidney, but initial interviews with the wonderful kidney transplant coordinators at the California Pacific Medical Center revealed that the condition of his kidneys was the important factor, not his age. So thorough tests were started which led to Gene donating a kidney to Brian. Millie, at age 63, thought she was too old to be placed on a kidney recipient list, and that her age might militate against receiving a kidney. Again, the kidney transplant coordinators said that her age was not a detriment.
So tests were started which led to Craig donating a kidney to Millie. The successful transplants were performed by Dr. Geoffrey Collins, and all four patients were superbly treated by the outstanding team of nephrologists under the direction of Dr. Barry Levin. On July 30th, 1993. Gene donated a kidney to Brian. On September 30th, Craig donated a kidney to Millie. Other than minor complications due to the medication that Millie and Brian must take to prevent their bodies from rejecting their new kidneys, all has gone extremely well.
I had watched Millies kidney problems worsen over many years. When her kidney function deteriorated to the point where she had to have dialysis, she first went on peritoneal dialysis (CAPD) in March 1987, and a fancy machine that was used in our home at night. I supervised her hookup up and leapt out of bed each time the alarm sounded we didnt use that machine very long. She then went on three times a day home dialysis. I carried the huge numbers of CAPD bags that were delivered every two weeks to our storage area and emptied her used bags. I took her to the emergency room each time she contracted peritonitis. After seven such bouts Millie went on hemodialysis with severe diet restrictions and a greatly diminished quality of life. I watched her gamely and stoically adjust to her new way of life.
I went with her when she first considered a kidney transplant in 1988 and spent two hours at a Los Angeles hospital listening to the perils of a transplant. I went with her to UCLA in 1989 for another transplant consultation, the atmosphere was much better but still not good as she had very high blood pressure.
Each time she decided against a transplant, as I am sure I would have if I had been in her place. I cannot possibly tell how difficult dialysis was for Millie, as I did not experience it myself, but as a spouse I had a strong appreciation for what the rigors of dialysis entailed. When Brian went on dialysis in 1992, Millie was deeply affected, as she knew just what her son was undergoing.
The family had always thought that Craig would donate a kidney to Brian when that time came. We inquired and were told that the California Pacific Medical Center in San Francisco was a superior kidney transplant facility, the very best around. First came the initial blood tests, and we were surprised to learn that Brian was type B and Craig type A. So much for our initial plan.
Since Millie was type A Craig wanted to give her a kidney. In the fall of 1992 we had the first of what were to be many consultations at California Pacific Medical Center. Millie and I lived in Auburn, and we had a 2 ½ to 3 hour drive each way. We were taken under the wing of our transplant coordinator, a RN named Sarah Healy. Sarah gave us encouragement and assistance she was simply wonderful. We were concerned over Millies age and general physical condition she was approaching 63 and her years on dialysis had taken its toll. The nephrologists were all supportive, as was everyone with whom we came in contact.
The people at California Pacific Medical Center were a marked difference from those we had previously encountered. They were all supportive and confident. Craig and his family came from Colorado to visit us for Christmas and Craig and I made a trip to California Pacific Medical Center for his initial screening. We were pleased to learn that Millie and Craig had a match of six antigens out of twelve the best a parent and child can have. He would be able to take his other medical tests in Colorado Springs.
As I sat through the informational briefings for Millie and Craig, the idea occurred to me that I might be able to donate a kidney to Brian. I was 65 and thought I might be too old, but I was assured that medical condition was the governing factor, not age. Brian was also visiting us for Christmas, so he and I drove to San Francisco and received our briefing (after three I was getting to know what was going on). Brian and I also had a match of six of twelve antigens amazing. We all felt this was meant to be and it turned out that it was.
Before the Surgery
Millie and I had rigorous physicals, including thallium stress tests, where radioactive thallium is injected through an IV and a treadmill test is taken. Soon after the treadmill the heart is examined for fortyfive minutes while the patient is lying on a table with the left arm awkwardly up over the head very uncomfortable. Four hours later the test is repeated. We both passed with flying colors. My only complication came with venous and arterial tests of my kidneys. These were done at California Pacific Medical Center and I had a severe allergic reaction each time. It seems the iodine in the dye bothered me I had not known this before as I have never been allergic to seafood. Each time, after the dye was injected I tingled all over, really tingled. I had red rashes all over my body and within minutes had three doctors watching over me! I didnt fell all that bad, but I was continually asked if I had a problem breathing. I did not, but it turns out that the reaction can cause the capillaries in the lungs to dilate and severely inhibit oxygen intake.
The surgery for Brian and me took place on July 30, 1993. We were all excited and I had absolutely no qualms. This was going to be just another adventure in my life, the most important one and one that I relished. I was giving a wonderful gift to my son, to whom I would give anything. What parent would not do this for their child?
Brian and Susan and their one year old daughter Alexandra flew from Hilo and Millie and I picked them up at the San Francisco airport. Brian and I entered the hospital the afternoon prior to the surgery. We shared a room with a great view from my bed I could see the Golden Gate bridge. The next day they gave Brian another room if we were in the same room it would discourage us from walking to visit each other they wanted us up and around as much as possible. I was put on a gurney and wheeled to the surgery waiting room. There the anesthesiologist talked to me, telling me what would happen. Just as he said, I dozed off and woke up a few hours later remembering absolutely nothing. I was told the transplant was a success and Brian was doing fine. This was all I needed to hear.
I was told that I had been in surgery for just less than three hours, and in the recovery room for another three hours. I felt that a shark had taken a bite out of my side, but the pain was bearable the satisfaction of the transplant overpowered anything like a bit of pain. The epidural IV in my back, which allowed me to administer morphine, did not work well and it was removed the next morning. I was given the drug Vicodin for pain, and this worked fine.
The day after the surgery was the worst certainly bearable, but the worst. I was quite uncomfortable, and the biggest problem was having to get into a wheelchair and going for a chest Xray. It seems my left lung had been nicked during the surgery when the surgeon took out part of a rib to get to the kidney and had partially collapsed. This sometimes happens and was not a major problem, but the doctors kept close track of it. I had to inhale from the lung capacity measuring apparatus all the time and was not very good at first. But I soon recovered and have had no aftereffects. On the following day the catheter came out and I had to get up to use the bathroom, pushing my rolling stand with IV and monitors with me. Getting out of bed was quite painful until I learned the best technique, then it became much less of a problem. I was soon up quite a bit, walking up and down the hospital corridor with all my paraphernalia and going to visit Brian. As each day passed I got stronger and had less discomfort.
I was released from the hospital after six days. I continued to recover steadily and surely. My great satisfaction of what I did gives me a wonderful feeling of accomplishment I gave a gift of life to my son. I was driving in two weeks. I was completely OK and back to playing vigorous racquetball in six weeks the surgery was not at all debilitating. As write this three years after the transplant I have no residual effects. My kidney function is completely normal. I have a faint ten inch scar above my waist on the left side and a slight numbness, but only when I rub there. I feel great!
To any prospective living related donor I can say this. Do it! The risk is minimal, as you wont be allowed to donate if you are not in very good health. Your kidney means so very much to your relative it really does not mean that much to you. You will not miss one kidney. As I have said giving a kidney is but a minor inconvenience it really is!
Living donor related kidney transplants pose minimal danger to the donors, and have a high success rate. A donor can give the gift of a near normal life to a relative without undergoing major trauma. The gift the donor gives is incredibly important to the recipient it is a wonderful gift of love and life.
I write this in August 1999, six years after the transplant. I am now 71 years old, and I feel just fine. I play racquetball twice a week and work out on the Nautilus machines - this keeps me in good shape. I completed scuba diving training and in 1997 have made dives at Monterey CA, Kona HI, Jaluit (Marshall Islands) and San Salvador (Bahamas).
As for medical problems, in the last six years I have had two cases of pneumonia (each time being treated with antibiotics at home) with rapid recovery. In 1996 I had hernia surgery the discomfort reminded me of my kidney surgery. Neither of these problems were related to my kidney.
I rarely realize I have but one kidney. I have absolutely no difference in my urinary function. I have a faint scar on my left side and a slight numbness when I rub that part of my body that is all I have left to remind me of my donation.
But I will always have that wonderful feeling of being able to help my son live a more normal life. That is a priceless gift. It is something that anyone who has the opportunity to donate to a relative should carefully consider.
During the past six years our family has received hundreds (we are probably approaching a thousand) of e-mail from all over the globe. We have answered (nearly) each one. And we have found that every story is different. We all four still avidly support living donor related kidney transplants, and we tell of our positive experiences. Of course, not everyone is the same, and a minority of transplants have complications of various kinds. So all we can do is tell about our experiences, and let the readers draw their own conclusions and make their own decisions.
I have had a kidney disease since age six diagnosed as Brights disease or gluomeronephtitis. In my early forties I developed high blood pressure and went on medication. A kidney biopsy later on showed nephrosclerosis, that is, hardening of the nephrons from high blood pressure. My kidneys began to fail in 1986. I was put on a low protein diet and went on dialysis March 1987. I first used a cyclo machine at home to dialyze then went to CAPD. I became prone to peritonitis and went on hemodialysis 1 ½ years later. During this period we were living in the Los Angeles area and I had a transplant evaluation at St. Vincents Hospital and later at UCLA. My high blood pressure continued to be a problem for a cadaver transplant.
I continued to have a 3 ½ hour hemodialysis three times a week and was on a very strict diet with low fluid intake. I was receiving high doses of EPO but always felt tired and trouble sleeping and headaches. I had one six month trial on CAPD then and back to hemo. After 6 years on dialysis I developed a steady cough and breathing problems due to fluid buildup. In 1991 we moved from Southern California to Auburn, located northeast of Sacramento. In the fall of 1992 my son Craig urged me to go to the California Pacific Medical Center for an evaluation for a transplant. Craig then had his blood tested and found we were the same blood type so I was evaluated with Craig as a possible donor. As Craig would be unable to work for two months the transplant was at his convenience. Both of us had testing done and we were a perfect match. I went through a lot of testing, GYN, mammogram, stress test and other heart tests. After all, I was 63! Craig flew in from Colorado Springs and had his kidney IVP and we spent one day in San Francisco and entered the hospital one day before surgery. I was so excited and yes, a little scared.
My surgery went well and I began putting out urine as soon as the transplant was over. I was in the intensive care unit until the next day. In my room I finally became fully awake and found myself next to a big machine with a line in my chest. Several bags of drugs were telling my immune system there was not a foreign body in there. Soon they removed the catheter and I made trips to the bathroom and I made trips up and down the hall with my machine.
What a thrill that was to be able to pee again. My former output was about a half cup a day. The first few days I did not have much pain until I began walking but as the days went by I did have pain, you always do after most any surgery. I recovered very fast from my surgery and my creatinine count went from 12 to 0.8 after the first week!
I was discharged after one week and went home to Auburn. Craig stayed with us for four days and then went home to Colorado. When your child has given you such a wonderful gift your emotions are high. Craig and I have always been close but never more than after our transplant. My recovery was wonderful and I adjusted to the drugs.
In the three years since my transplant I have had one episode of rejection following a gall bladder surgery. My drugs were increased and I am now a year later maintaining a 1.5 creatinine count. I have had two bouts of Cyto Megalo Viral disease (CMV), not uncommon to transplant patients with a lowered immune system.
You must remember that a transplant is not a cure for kidney disease but youre off the kidney machine, and you can eat well and you can travel but you must take care of yourself and never never forget to take your medications. I feel very lucky to have such a wonderful son and have been able to have a transplant and at the best place and with the best doctors.
Anyone contemplating donating a kidney does not really understand the great gift he/she is giving the recipient. It is so hard to be on dialysis and it is a lousy way to live. To give a person a kidney gives that person a whole new life!
It's been over 3 years now. Time has sure gone by. I've been doing a lot of thinking about how to tell my story. I'll guess I'll start from the beginning. Ever since I can remember I have always seen my mom in poor health. She has gone through untold surgeries and hospitalizations. I have always admired how she could cope with all that and raise two sons, but she did. And a fine job I might add. As I grew older I began to appreciate my parents more. They are both one of a kind and very special to me. My brother Brian and I are very lucky to have such loving parents.
As my mom's condition worsened, it seemed like a transplant was the only help for her. As you have read in the previous articles, at first I had planned to donate a kidney to my brother Brian, but initial tests ruled that out. I then thought of my mom and if I could help her. I knew donating a kidney was not a big deal for me but it was a lifesaver for the recipient. We had the tests and a match was made! It looked like this was meant to be. I also felt good that Brian was going to be getting help from my dad so this was going to work out for everyone.
The hospital set the date for the end of September and we were all set. I arrived the day before and had a renal arteriogram. It's very painless. You just lie still and they inject a dye to light up your kidneys. They then can view on the monitor your kidneys to decide which one to remove. That night we all stayed at the Presidio (US Army base near the hospital) and I was looking forward to the next day. We checked into the hospital later in the morning to get us ready for surgery. I was starting to get a little nervous as I was not used to hospitals.
The staff at California Pacific Medical Center did an excellent job of instructing me of what to expect. I was told that first my kidney was removed and then my mother was brought in and then it was put into her. The anesthesiologist came in and explained the procedure. The next thing I remember was waking up shivering. It was over for me and they wheeled me into my room.
The first day was a little painful but the drugs took care of that. As soon as I could walk I went to see my mom. The look on her face said it all! She had color and gave me a great smile. It was the most incredible feeling in the world to be able to help someone whom was dying, especially my mother. I'll never forget it. I rapidly progressed and was out of the hospital in 4 days. As my dad stated in the previous story, there is really nothing to it.
One only needs a single healthy kidney to live a normal life. And I have really put it to the test. I lead a fairly active lifestyle that includes long hiking and mountain climbing. I have never experienced anything different physically. If anyone reading this is considering a living related donation, by all means do it. It is the greatest gift you can give someone including yourself. Please feel free to contact me if you have any questions or concerns. I will be glad to respond.
Although I had been diagnosed as having a kidney disease since I was very young due to traces of blood in my urine, it wasn't until I was 27 (in 1984) that I was conclusively diagnosed as having Alport's syndrome. Alport's is an auto-immune disease that results in progressive degeneration of certain types of collagen in the body usually, but not always, resulting in hearing impairments, poor vision (via an anterior lenticonus), and kidney failure.
In my case an episode of gout signaled the onset of my kidney problems. For eight years I experienced a slow but steady decline in my kidney function. During this time I was in graduate school at Oregon State University working on my Ph.D. in Zoology, which I completed in 1990. In early 1992 I started as an Assistant Professor of Marine Biology at the University of Hawaii at Hilo. My daughter Alexandra Gabrielle was born in June of that year and in September 1992 I went on dialysis. Up until 1992 I generally felt well and functioned normally except for being constantly tired. I was on a low-protein, low-sodium diet for the last two years and I think that helped delay my kidney failure for perhaps up to a year.
I was on hemodialysis for 10 months prior to my transplant. The worst part of dialysis was realizing that my life was completely in the hands of other people. I went three days a week (M-W-F) for about 4 hours each time, generally from 5-10PM after teaching at the University. I never missed a single day of work and actually got a lot more work done than usual as I sat strapped to the dialysis machine for 9-10 hours per week. Although I generally felt lousy most of the time, several things made it bearable: the fantastic dialysis staff at Hilo, the tremendous support from my family (especially my wife Susan), my charming daughter, and my job. In my case I found it easiest to stay busy and not dwell on my condition.
As Dad has said we originally discussed the idea of getting a kidney from my brother Craig, but it turned out my father was a better match. So in late July 1993 I flew to San Francisco with my family and checked into California Pacific for the transplant. The staff at Cal Pacific were truly wonderful and I really don't remember having any apprehensions prior to the surgery. If anything I was excited about a new dialysis-free life. It was also very reassuring to have your father giving you a kidney. It is hard to describe the feeling of having my father give a part of himself to me. It certainly is the most wonderful gift I can ever imagine!
I remember being wheeled into the operating room and having the gas mask placed over my face. My next recollection was wakening up in intensive care. Although I was in quite a bit of pain, the nurse held up my urine collection bag (I had a catheter) and I remember smiling at the large bag of yellow urine. Only a dialysis patient can understand getting excited about a bag of urine!
At any rate I recovered rather quickly and I was up walking around the next day. Although I was supposed to be discharged after a week, my body tried to reject the kidney (a common occurrence) and I spent an extra week in the hospital. Contrary to popular belief I experienced no pain during the rejection episode and was simply given a higher dose of steroids to knock down my immune system. After resting for a week at my parents house I flew back to Hilo and began teaching, three weeks after my transplant. About a month later I had a serious bout of CMV (cytomegalovirus) and spent two weeks in the hospital. During this time I also had another rejection episode and was again given higher doses of steroids (Prednisone).
Since then (Sept. 1993) I have been quite healthy and feel great. I have had no further rejection episodes and my kidney function has been stable. I live a completely normal life and actually am sick less than most of my co-workers at the University. In September 1995 my son Robert Kalani was born, so it is possible to conceive a baby after a transplant. Kalani, along with my daughter Alexandra, are completely healthy and have no kidney problems. I do notice the effects of the immuno-suppression drugs, in general I find it harder to concentrate and think clearly, but it is very minor compared to my condition on dialysis. I am very lucky to have my students constantly keeping me on my toes!
In summary, my transplant experience was a very positive one although I had the usual rejection episodes and post-surgery infections. Having a living-related donor made all the difference in the world because my father's kidney is now keeping me alive!
As we enter the year which will mark the ninth anniversary of our transplants, we will each give an update of our condition.
Gene I am now 74 years old. I still play racquetball and tennis. My urinary function remains completely normal. My health remains good. I never realize I have but one kidney unless I think about it. I encourage any potential donor to realize what a very small risk there is in the process of donating a kidney.
Craig I am 48 now and living a completely normal life. With the new surgical procedures for extracting the kidney, it is now less painful with a faster recovery time. Never know I have one kidney.
Im 44 and feeling pretty good. After eight years my kidney function is the
same as it was after my transplant. I see my nephrologist every 4 months and visit the
transplant clinic once a year. I live a completely normal life in every way with the
exception of my hips. Two years after my transplant I experienced sharp pains in my right
hip which was later diagnosed as avascular
necrosis --a slow deadening of the bone tissue which is associated with the use of
steroids. In my case it was probably due to my use of prednisone, either as an
immunosuppressant as part of my normal kidney drug regimen or from the high doses of
solumedrol (liquid prednisone) used during my two rejection episodes. Nobody knows for
sure but it was likely due to the latter. An any rate my right hip slowly grew worse and I
had it replaced in 1998. I was off my feet for about a month after the surgery and it took
about two months to get back to normal walking. I have had several dislocations since
then, and some chronic leg pain, so I cant say it has gone as well as Ive
liked. My recommendation is to talk with your doctor and try to taper off steroids as soon
as possible after the transplant. If you are faced with hip problems get the best
orthopedic surgeon you can find. All in all I am much happier than on dialysis and I
wouldnt change a thing if I had to do it over.
Brian Im 44 and feeling pretty good. After eight years my kidney function is the same as it was after my transplant. I see my nephrologist every 4 months and visit the transplant clinic once a year. I live a completely normal life in every way with the exception of my hips. Two years after my transplant I experienced sharp pains in my right hip which was later diagnosed as avascular necrosis --a slow deadening of the bone tissue which is associated with the use of steroids. In my case it was probably due to my use of prednisone, either as an immunosuppressant as part of my normal kidney drug regimen or from the high doses of solumedrol (liquid prednisone) used during my two rejection episodes. Nobody knows for sure but it was likely due to the latter. An any rate my right hip slowly grew worse and I had it replaced in 1998. I was off my feet for about a month after the surgery and it took about two months to get back to normal walking. I have had several dislocations since then, and some chronic leg pain, so I cant say it has gone as well as Ive liked. My recommendation is to talk with your doctor and try to taper off steroids as soon as possible after the transplant. If you are faced with hip problems get the best orthopedic surgeon you can find. All in all I am much happier than on dialysis and I wouldnt change a thing if I had to do it over.
Millie - I am 71 now and my kidney from Craig is doing very well. My blood counts remain about the same and I have a blood panel done every two months. My creatinine runs about 1.6 to 1.7. Once a year I go to San Francisco and see one of the nephrologists that have followed my case. They have been pleased on how well I am doing. My cholesterol became high and I am now taking Lipator. This problem seems to be common in transplant patients. I have a regular internal medicine doctor and see a local nephrologist when needed. I had a cataract removed with a lens replacement in my right eye in August. It went well and I am seeing a lot better. My cataracts came after my transplant. I feel very lucky to have a son who gave me his kidney and tell him so often. We need more family donors in the transplant program and we keep telling people what a wonderful thing it is to give and to receive such a special gift. Please carry a donation card and tell your loved ones you want to donate.
We lost our beloved wife and mother Millie in November 2003. She had suffered heart attacks and strokes that were unrelated to her kidney transplant. She was always very grateful for the gift of health and love given to her by Craig. She will always be our inspiration in her fight to overcome her health problems.
Donors Gene and Craig, at ages 77 and 51, and recipient Brian, at age 47, remain in excellent heath.
Last year Brian & Gene celebrated 15 years with a healthy transplanted kidney! Both are doing very well.
If you have any questions or would like to correspond with any of us please write us at the following e-mail addresses:
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Last updated: 1 February 2009