I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Jenabcd on May 28, 2009, 10:13:39 AM
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Hello! I'm wondering if anyone has had, or knows, about the treatment for high PRA (over 90%) and the treatment, having a live donor. What exactly is involved? How do you feel during it? How often is it? They only told me that they can do a treatment that involved an IV that takes approx 6 hours, + anti-rejection pills. She said she'd let me know more next week, after the dr's meet up, but if I can find out anything ahead of time, that would be nice. Any information would be so much appreciated!
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I received my kidney transplant 2 months ago with PRA @ 89%. Five days after the transplant, they gave me IVIG as the treatment. This is the only treatment so far since my transplant.
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I imagine it would be the same or similar to that of what Jill went through on her positive crossmatch transplant. Its the 1st subject listed in the area.
http://ihatedialysis.com/forum/index.php?topic=1319.0
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Oh wow, thank you BigSky... that was such an informative link!!! I will read it again, I know. Thanks to you too Rookiegirl. I was told that I can't be transplanted until my PRA number goes way down, so the treatments have to be first. I'm surprised that you could be transplanted with that number, but very happy for you! Thanks. :)
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Jena...also check out information on Paris (our wonderful Paris) she is undergoing treatment right now.
I don't know how to link her post, but you should be able to find it with the search feature.
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Oh wow, thank you BigSky... that was such an informative link!!! I will read it again, I know. Thanks to you too Rookiegirl. I was told that I can't be transplanted until my PRA number goes way down, so the treatments have to be first. I'm surprised that you could be transplanted with that number, but very happy for you! Thanks. :)
I'm surprise too, but I'm grateful for my transplant so far. I guess each hospital/surgeon are different. I pray each day for contiues good health.
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My mom had a positive crossmatch transplant at Mayo last June as well..she got infusions of a new drug called eculizamab (I don't know if I spelled it right, so pardon they misspell). She had numerous IVIg infusions as well as plamapheresis. Her journey was a little bumpy after the transplant (live donor was my youngest sister) but so far, she is doing great. We are truly grateful for the men and women of Mayo Clinic who treated my mom and sister before, during, and after the transplant. Good luck and I hope you get all the info and support you need here!!
Beth
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That is so encouraging... thank you Beth! Do you know how she felt during the treatments? Side effects?
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My PRA levels were in the 90's when I began IVIg and then plasmapharesis. I had ten months of IVIg infusions. It brought my PRA levels down to 8%, although they bounced up and down during those months. I did plasmapharesis for two weeks. Just as they were about to start testing a live donor, I got a perfectly matched kidney from a family in Texas who were gracious in their time of grief to donate their loved one's organs. I am still considered high risk, so i will always have to take prednisone along with my anti rejection meds.
I had head headaches and a low grade fever during infusion. I know Paris has had a few more side effects, so looking up her story is a great idea.
Much luck with your journey
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Vandie, were your infusions every day? I am terrible at using the search engine at this site... I can't find Paris' story.
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When I had my first IVIG infusion, the only effect I had was nausea.
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Vandie, were your infusions every day? I am terrible at using the search engine at this site... I can't find Paris' story.
Here you go Jenabcd
http://ihatedialysis.com/forum/index.php?topic=13518.0
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Thank you so much!!!
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Jenabcd, As you can see, several of us have high PRA's and are finding solutions to lower them. I had IVIG last week and the main side effect was a fever for several days. The infusion itself was no problem, just long. Yesterday, I had an infusion of Rituxin (chemo drug used to kill b-cells that carry the "memory" of the antibodies). Again, no problem with the infusion. No fever this time, but have been throwing up today. Next week, another round of Rituxin and then a week after that, another IVIG infusion. They in 2-4 weeks after the last one, they will know if my PRA has gone down (crossing fingers, praying, doing anything and everything!!) My PRA is 100 and I am O+. I have been working on getting these treatments for a long time. JillD and Vandie are the ones that gave me great hope for the treatments. Google both IVIG and Rituxin with kidney transplants and you will find lots of information. Good luck! We are here to help! :2thumbsup;
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Hi Paris! I have now read yours & Jills stories here. Such inspirations. I am also 0+. I just found out -- through my son (my donor) !!! -- that my PRA number is over 90. My coordinator is no longer my coordinator. She never even let me know when I got accepted on the list. Anyway, I am so happy to be able to read about your journey here. How sweet that you can finally do this, and also how you told your son! I loved it. This is all such a long process, and takes so much patience. It's hard sometimes. It seems some people have treatments daily, weekly or monthly? I should find out next week, I hope. I will continue to check in though, and keep up with you. You will continue to inspire me, and know that it can be done. I sure appreciate it, and knowing your side effects. I always want to know as much as possible. Thank you!!
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Hi Jen, This site is the only reason I knew there were treatments for the PRA. I started researching over 2 years ago after several donors were denied. First I worked with Johns Hopkins but the distance was a problem financially. Then with Charlotte Medical Center which is only 3 hours away. But then, my first transplant center, University of North Carolina started the treatments last year. I got to meet with the head of the program and he said I was a great candidate. So, the journey began! I have about 3 1/2 years on the transplant list. If this doesn't lower the PRA, then the surgeon says we will do plasmapheresis and retest donors again. So many things they don't tell you when you start all of this! It is a very emotional rollercoaster, but it helps to have so much support here from people who know what you are going through. Keep posting -- you are among friends who care. :grouphug;
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:bump;
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Jenna's PRA is 98% - they checked it when they looked at her last labs. I was wondering though, how often is this number checked? I know it can change a bit - but is it something done annually or what?
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How do you know what your PRA is? Do they tell you once you are listed? I haven't a clue what my PRA is...how you you find out?
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:bump;
I'd really like to know...how do you know what your PRA is? Is it important that you know, or is it enough that just the doctors know? If you are approved to go on the waiting list, what information are you given about your PRA/other factors that would have a role in determining how long your wait might be?
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Otto gets his checked every 8 weeks, it's something he has to do to stay active on the list and has stayed at 100%.
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Otto gets his checked every 8 weeks, it's something he has to do to stay active on the list and has stayed at 100%.
And does he get some sort of report telling him what it is? Does it change from time to time? I know that pregnancies and blood transfusions cause your PSA to go higher, but other than that, what makes it change? Can someone please explain to me how this works?
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I'd never heard of PRA before 2 days ago, I still don't really know what it is, and I've had 2 transplants. If it's something that's tested on me, it's not something that I'm told about
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Approximately 30 percent of patients who are awaiting a kidney transplant are considered "sensitized." Through a test called Panel Reactive Antibody (PRA), we learn an estimate of the amount of antibody against foreign tissue that the patient has. The PRA is expressed as a percentage and shows the likelihood of having an antibody against a particular donor. A patient is considered sensitized if the PRA is greater than 20 percent. Having antibodies against foreign tissue makes it harder to find a compatible living or deceased donor kidney. Sensitized patients may wait three to four times longer for a compatible deceased donor kidney compared to a non-sensitized patient.
More info here http://www.uwhealth.org/transplant/kidneydesensitizationprogramfrequentlyaskedquestions/10618
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Otto gets his checked every 8 weeks, it's something he has to do to stay active on the list and has stayed at 100%.
And does he get some sort of report telling him what it is? Does it change from time to time? I know that pregnancies and blood transfusions cause your PSA to go higher, but other than that, what makes it change? Can someone please explain to me how this works?
Yes his transplant cordinator lets us know there have been no changes, Otto's has stayed at 100% since October of 2008.
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My apologies for being thick, but I still have questions...
lola, if Otto's PRA is 100%, isn't that the highest it can get, ie, doesn't that mean he is as "sensitized" as possible? What made him 100%? Did he have a lot of blood transfusions? I know he was never pregnant, so what made him so sensitized? Or is that just the way he was built?
Okarol, I understand the concepts of high PRA and desensitization protocols, but I still don't understand how a person on the list is informed about his own particular PRA level...and when. When Jenna was being evaluated for transplant, at what point did someone tell her, "your PRA is blah%, and that means whatever."?
I am assuming that PRA testing is why people on the list have to have monthly bloodwork...is that right? If you have, say, the flu one month, does that translate into a higher PRA? Does any infection result in an elevated PRA? Can your PRA ever go down?
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My apologies for being thick, but I still have questions...
lola, if Otto's PRA is 100%, isn't that the highest it can get, ie, doesn't that mean he is as "sensitized" as possible? What made him 100%? Did he have a lot of blood transfusions? I know he was never pregnant, so what made him so sensitized? Or is that just the way he was built?
Okarol, I understand the concepts of high PRA and desensitization protocols, but I still don't understand how a person on the list is informed about his own particular PRA level...and when. When Jenna was being evaluated for transplant, at what point did someone tell her, "your PRA is blah%, and that means whatever."?
I am assuming that PRA testing is why people on the list have to have monthly bloodwork...is that right? If you have, say, the flu one month, does that translate into a higher PRA? Does any infection result in an elevated PRA? Can your PRA ever go down?
MM, previous transplants can raise PRA, too. I know Otto has had a least one previous transplant. It only takes one occurrence of one of the risk factors to be unlucky and end up at 100%.
It looks like you won't be informed of your PRA value. Call and ask your coordinator. I would bet that your PRA is low, if not zero, because if it presented an issue, they would have most likely suggested IVIG to you by now.
As for what it means, it sounds like you know what it means. I have seen it broken down into rough categories: less than 30 is low, 30-70 is mid, 70+ is high. Hope this helps.
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I was told after several living donors were tested. My understanding is they have to actually test your blood with others to see what your reaction is. Mine showed I would reject everyone. At one time they called it "anti-human antibody" . I got a phone call when I was at dinner with my family from the transplant co-ordinator saying all donors tested weren't a match and it was nearly impossible for any kidney to be a match. Great news over the phone! It was 100% over 4 years ago and remains the same. Last year I had IVIG and Rituxin infusions to try to change the PRA. Unfortunately, it didn't work for me, but it does great things for most. I send a blood sample every month to the center and it is tested against any kidneys that come available. So, they are always aware if there would be a fluctuation.
Mine was due to 4 pregnancies. My body looked at the babies as foreign objects and built up all those lovely antibodies. I would never have known this if I hadn't needed a kidney. Yes, lots of peoples PRA goes down. A little boy I follow on facebook had a PRA in the 90's but had a really bad Peritenial infection. Now his is in the low 80's -- just few weeks later. Another member here had IVIG and it reduced hers down to 8%!! I hope this has helped some. Keep asking questions. It is the only way I learned what was happening to me. :cuddle;
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Cariad and Paris, thanks so much...your comments helped me understand more about this. Yes, of course a previous transplant would result in a higher PRA; I should have thought of that scenario.
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Otto had his 1st transplant for almost 15years and was a good little boy getting his flu shot every fall, then fall of 2006 his boddy went crazy making antibodies after the shot and the antibodies turned around and attacked his kidney, at that time his PRA went up to 96%. Fall of 2008 Otto got his secound transplant won't go into details he lost it and now he's at 100%, and yes he got MANY blood transfusions with the 2nd kidney.
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I was told after several living donors were tested. My understanding is they have to actually test your blood with others to see what your reaction is.
I found out mine from UCSF when I asked. I needed a PRA below 30 to get into a clinical trial. I had all three major risk factors and was telling the nurse I assumed mine would be high. It was zero. It doesn't need to be tested against anyone's blood (mine wasn't). Later, when my PRA rose a bit (due to viral meningitis? or switching transplant meds? impossible to say) they sent me a report detailing what my specific antibodies were. I am going to ask Northwestern if I can get data from their test, which last said my PRA was 15 (before the transplant, so that's probably changed quite a bit).
At one time they called it "anti-human antibody" .
There's a lovely, sensitive description! :sarcasm;
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I never knew Jenna's PRA before her transplant, but I learned about it here on IHD. So this time, after the rejection episode, I asked what is was. It is high now, even after all the IVIG, which they hoped might reduce it, alas, it did not.
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The PRA and HLA are among the labs during the transplant evaluation (with about 9-11 tubes of blood for different testings). Ask for a copy of lab results and you will have everything.
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I got a copy of hubby's first transplant eval lab series and it had a line "PRA: NEG". I asked the neph "Does that mean 0???" and he answered "I assume so. In medicine, negative is usually good."
But still, when I had my first donor test, it came back positive cross-match. I told the neph at a clinic visit, with the nurse and the dietician and the social worker sitting there. Everyone else went "Positive! Yay!" and the neph and I were sitting there sharing a look saying yeah, that's bad.
So I don't know why our blood is fighting if he's supposed to have 0 PRA, I assume there are other factors involved. He's not listed yet, so I haven't asked if this center does any desensitivation.
- rocker