I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: sherrile on February 23, 2007, 09:14:14 AM
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Hi all-New here-been lurking for awhile tho. My 18 year old Son is on Dialysis for the 2nd time in his life.
He lost his Kidney transplant that he had for 12 years. I was going to donate one of mine to him last year, on Jully 11.
Every thing looked great ...til the day before surgery we had a positive flow cytometry test, and everything was
cancelled. It was devestating, bieng that close and everything falling apart last minute. So now we wait, on the waiting
list, and now a year on dialysis. His pra continues to be at 50. I am trying to find out as much as I can
about plasmaphoresis. Does anyone know if this procedure has bad side effects????
There has Got to be something we can do.... I had passed all the testing. Here I sit with a perfectly good kidney to give him,
and I cannot help him out of that chair!!! I appreciate any and all response... Sherri
EDITED: Moved to proper section Transplant Stories - Rerun, Moderator
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Hi Sherri -
You can find more info if you use the SEARCH feature here and look up plasmapheresis, it's been
discussed before. Also, check out Jill's story at http://ihatedialysis.com/forum/index.php?topic=1319.0 - she
has good info about the process as well.
I am sorry about your son and hope you can get him some help soon. You don't say where you live, and wait
time varies depending on your location. Are there any other prospects for a living donor? My daughter had a
transplant 5 weeks ago from a woman I met through the internet, but not all hospitals will accept such an
arrangement. Look through the TRANSPLANT STORIES http://ihatedialysis.com/forum/index.php?board=27.0.
You may also consider finding a hospital that will arrange a swap since you are willing to donate.
Best of luck to you,
Karol
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I hope you find all the information you need Sherrile.
Please go to the Introduction section here and read the rules http://ihatedialysis.com/forum/index.php?board=34.0
And after that maybe you could post an introduction in the introduce yourself section here:
http://ihatedialysis.com/forum/index.php?board=14.0
That way we can get to know you better.
Thanks,
Sluff, Moderator
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Hi Sherrile, I'm on transplant list with antibodies standing at 99 to 100%. I have a donar getting checked and if she is compatible I will have to do plasmaphoresis to bring my leaves to match my donors levels then the transplant will occur. I guess it's like doing dialysis they told me. I'm game and very willing to do it if it gets me a kidney. I should know In 4 weeks if it's a go. Good luck and I'll put you and your son on my prayer list. Chin up, God is good. :2thumbsup;
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I am in the same situation as bluedove57. Except I have been dealing with Johns Hopkins for 8 months and now, Carolina Medical Center for 3 months. It takes Johns Hopkins 3 weeks every time they do a blood test for my son and myself. He matches 5 out of 6 antigens, and they are very pleased with that result. We are waiting for results on the latest testing. Wednesday I go for a day of tests at Carolina Med Center and maybe find out what plans they have. We have 2 great transplant hospitals where I live, but neither does plasmapheresis with transplants. Jill D. is my inspiration (read her posts) and I will do whatever do be accepted into a program. Been on the list for 16 months, but transplant surgeon said with continual PRA of 100%, cadaver donor isn't really going to happen. I am grateful for my children and friends who have stepped up to help me. It makes me humble. Let us know how things go. Everyone here cares.
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Hi Sherrile,
You may have read my intro post and the positive-crossmatch thread that Karol referred to ( ;) to paris and Karol!), but I wanted to respond to give you hope!
First, I know exactly how you are feeling. The first time my transplant was scheduled was in August of 2005 - my sister was determined to be a perfect match, and we had scheduled the transplant months before - and three days before my transplant I found we were a positive crossmatch and everything was cancelled. I was devastated as well, and my sister had her world drop out from under her as well since she was mentally prepared and so wanted to do this to help me.
I will have you read the other threads to get the details of the path I took from there, but I would like to answer your questions about plasmapheresis. I had my transplant Dec. 5, 2006 and had 2 weeks of plasmapheresis prior to transplant and 2 weeks post. The number of treatments your son would have would depend on his antibody levels. I had access lines put in my neck (outpatient surgery - no big deal) that they used for the treatments. I had them in for 4 weeks, and never had any infection problems. The important thing was to keep it dry (I would tape press and seal wrap around it when I showered!). I would also have the dressing changed every other day. They did not want to use my fistula because the flow was too much. I continued to use my fistula for dialysis.
The plasmapheresis was sooooo much easier than dialysis. For one thing...no needle sticks. Also, it only took about 2 hours. Also, they are removing the plasma from the blood and replacing it with synthetic plasma, so it was not painful at all. It was normal to get a tingling sensation In the lips and mouth, but if it spread anywhere else it was important to let the nurse know. It meant that the calcium level was getting too low, so they would give liquid calcium through the IV. This was not painful, but it gives the strangest sensation that you are wetting your pants (you're not, but it feels like it!) I could eat and drink whatever I wanted while getting the treatments (in fact, the nurses always loaded me up with Lorna Doones!) Like dialysis, you can't use the restroom during treatments since you are attached to a large machine.
After my plasmapheresis treatments, I would have to go to the infusion center and have IVIg infusions. This would replace some of the "good" antibodies. This would take about 3 1/2 hours, and again I could eat and drink whatever I wanted. Since the IVIg bags were on an IV pole, I could wheel everything into the bathroom if needed (definitely a good thing post transplant, as you are supposed to drink tons of water and pee every 1 - 2 hours!)
AS you probably read, I had my transplant at Mayo Clinic. They have done hundreds of these transplants, and the transplant staff is awesome! I also just loved all of the nurses in plasmapheresis. It is a 1 to 1 nurse to patient ratio, and they are right there the whole time so you get to know each other well! Actually, everyone at Mayo is fabulous.
I am almost 12 weeks post transplant, and I am doing GREAT! My sister is also doing great...in fact, she left on the train this morning for Minnesota for her 3 month follow up appointment!
Please let me know if I can help you with information or reassurance. Most of all, don't give up! You and your son's situation is very similar to mine and my sister's, and I am living proof that there is great hope for you!!!
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Thank you everyone who has responded to this! I appreciate it so much. I appreciate so much that there are
those out there that can Relate! I can get so caught up in waiting for that phone to ring for a kidney for Levi.
The first time he got a kidney-(He was 4 then) the wait was like 3 weeks. Those antibodies have really played a
major battle in this. Jill, your experience is so iinspirational to us! I am glad to know that plasmaphoresis is not a
painful thing, and that it is an option for us. We live in Colorado, and the Docs. here have not really pursued
the subject with us, so we shall see what the Good Lord has in store for us. THANKS!!! Sherri
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Sherrile, my transplant center didn't pursue it either. I went online to get all the information I could and had my records sent to Johns Hopkins and Carolina Medical Center. You may have to be the one to push for this. I think we have all learned how much we have to take control. Please keep us posted and let us know if there is any thing we can do.