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SHARON'S PLASMAPHERESIS STORY
I have PKD. I follow 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.
Older recipients get more transplants.
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!
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