Sharon - Plasmapheresis
I have ADPKD. I followed in the footsteps of my 81 year old mother who received a kidney transplant 22 years ago. My mother made it look easy. Her creatinine is 0.5. And it stays steady at that rate. This January, my kidney function dropped below 10% and my nephrologist wanted me to go on dialysis. I dragged my feet, because I still felt pretty good. By April I had dropped to 8% and I knew my days were numbered. My daughter had tested for me 2 years ago and I had antibodies that would attack the kidney if she donated to me. I have been on the transplant list for 2 1/2 years.
My daughter's boyfriend, Bob, whom we knew several years ago. when they dated in college, offered to test for me. We got the same results. It seems that when my cysts ruptured several years ago, I had a blood transfusion. Because of this transfusion, I had developed antibodies and I now fall into the category of being sensitized. I will have trouble finding a matching donor because of these antibodies. It will take several years, or maybe I will never find a donor. This time, however, is different. It seems the hospital is using a procedure called plasmapheresis to get rid of these antibodies. They told Bob to ask me if I would be interested in trying this. I went to UPMC in Pittsburgh and they accepted me into the program. They set me up with 6 weeks of treatments. I also had to take immunosuppressants. They made me sick to my stomach. The plasmapheresis machine is similar to a dialysis machine. It was strange to see my blood flowing though the tubes in front of me. This procedure takes about an hour. Then they put some kind of fluid back. The plasmapheresis separates the plasma from the blood. The antibodies are in the plasma. They throw the antibodies away. They test every week to see if the antibodies are weakening or are gone. They watch the blood work closely.
I had to go the second day for a catheter in my chest, so that I could start dialysis, because my potassium was so high. Now I was going Monday, Wednesday, and Friday for plasmapheresis and Tuesday, Thursday, and Saturday for dialysis. I got sick following the first and second dialysis treatment. After that, they decided not to take any fluid off of me. I did not get sick from dialysis after that. I started treatments the last week of April and was scheduled for a transplant on June 2. I did not feel well because of the medications and worried the whole time if all this was going to work. The plasmapheresis people were wonderful. They gave me Zofran and it made me feel better on those days. By the sixth week of treatments, my antibodies were gone! What a miracle! The transplant would proceed.
The operation itself was not that bad. No worse than any other operation. My creatinine the night of the transplant was 8.4. Immediately after the operation, it was 4.4. Wow! I still was having trouble with my appetite. They sent me home after a week. I was home 4 days and got an infection. My creatine was climbing and they were worried I was rejecting my kidney. They put me on antibiotics for 7 days. My leg swelled up like balloon. I also had a blood clot. I went home after a week. Things had stabilized and the kidney was fine. My creatinine was 1.1! But my antibodies were coming back. This was something that we knew could happen. I went back on plasmapheresis. It took 6 more weeks of plasmapheresis to get rid of the antibodies again. Then my retina in my eye started leaking and my vision was blurry. The retina specialist said it was transplant related. Probably from steroids from the plasmapheresis. They stopped the solumedrol that they were giving me. My vision is much better. I am now down to monthly hospital checkups. I am feeling wonderful. My stamina is almost back to normal. My appetite is great. I feel incredibly lucky. It will be 4 months Oct.2.
If you are having trouble finding a perfect match, perhaps you would want to look into plasmapheresis as an option. It is not without its ups and downs, but it might be the only option for some of us. I want to encourage everyone to become a donor. I read that if everyone would be a donor, no one would ever have to be on dialysis. Wouldn't that be wonderful? We all need to make that our goal! I thank God every day for my new kidney. I have a new found peace and happiness that I did not have before. I hope I can keep holding on to that feeling. I am very, very grateful to my donor and for this new procedure that gave me my life back. I had my transplant at Montefiore Hospital in Pittsburgh, Pennsylvania USA. It is a division of UPMC. There are other options if you are having trouble finding a perfect organ match; plasmapheresis is one option to achieve a transplant. My eyesight has improved greatly, although not back to normal.
For Your Reference
My daughter has a friend whose father has been on dialysis for several years. He is 80. Last week, he received a kidney from a cadaver, who was an older woman who had a healthy kidney. He was so happy! He said he was afraid to go to sleep because he was afraid he would wake up and find out his new kidney was a dream. They are now having some problems with the new kidney "sleeping". They had to operate on him to fix a problem with a clot where the new kidney joined. They were hoping this would solve the problem. He had to go back on to dialysis again. I will let you know how this turns out. We are all praying for everything to work for him. While I was on plasmapheresis, a 70 year old woman was also having the plasmapheresis done because her daughter was donating a kidney to her and was not a perfect match. I saw her in clinic after both of our transplants and she was doing better than I was at the time, and I was 57! These older folks deserve a better life too. If only there were more kidneys, so that everyone who wanted one could have one. If only more people would become donors, there would be plenty of kidneys for all!
ADDENDUM Aug 2012
My eyesight has returned completely back to normal 4 months after the transplant. I don't want anyone to hesitate doing plasmapheresis because there is a fear for their eyesight. I am doing wonderfully with my second post transplant anniversary in June. I recently talked to a young woman about plasmapheresis. She has been on dialysis for 6 months. She has several family members who offered their kidney for her and they were tested. But no one matches. She has the same nephrologist as me. Yet she was never even told about the possibility of plasmapheresis as an option.
I was not told either. I asked my neph at my 6 month check up if he had anyone else doing plasmepherisis and he said no–just me and the girl who was getting it at the same time as I did. I fear it is because nephrologists do not offer this option to us. Ask questions, ask about incompatible matches, ask about plasmapheresis. It is another option.