I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: slk76 on April 20, 2007, 11:00:17 PM
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Do you or someone you love who needs a transplant have a high antibody count? I am a kidney transplant recipient and due to 24 transfusions I had a very high antibody count. The first 2 centers I went to in northern Ca, where I live, told me there was nothing they could do. I was basically tied to dialysis until i died. That all changed when I, through a series of circumstances, found out about high dose IVIG (intravenous immunoglobulin) being done at Cedars-Sinai in Los Angeles. John's Hopkins also uses IVIG in conjunctions with plasmapheresis, but since i live closer to LA I ended up choosing Cedars and it was the best choice I could have ever made. I had one dose of IVIG (typical is up to 4) and then my living donor, my MOM, was able to give me her kidney. This all happened nearly a year ago now, my transplant date was May 16, 2006. So IF you have high antibodies high dose IVIG is the thing for you!!! please feel free to ask me any questions. I'll answer anything, I just want as many people as possible to be free of dialysis!!!
Soraya
THERAPY MODULATES HIGHLY SENSITIZED IMMUNE SYSTEM TO LET MOTHER GIVE
KIDNEY TO DAUGHTER
LOS ANGELES (Dec. 20, 2006) – As the holidays approached last year, Soraya Kohanzadeh, 30,
Muir Beach, CA, was living day to day, extremely ill, with no hope and expecting to live a shortened
life dependent on kidney dialysis. She needed a kidney transplant but because her “anti-donor”
antibody levels were so high, her doctors believed that a transplant was impossible – perhaps ever.
However, thanks to a specialized type of anti-rejection therapy pioneered at Cedars-Sinai Medical
Center, Soraya successfully underwent a transplant in May of this year and has a “new lease on
life” as she looks forward to 2007.
Soraya, was among the estimated 33 percent of kidney failure patients who have high “anti-donor”
antibody levels and who are often told that a transplant is not possible even if a potential donor’s
tissue and blood types otherwise match perfectly.
But on May 16, 2006, she received a kidney donated by her mother, Joan Lando, at Cedars-Sinai .
The transplanted kidney started working immediately, both patients recovered well, and Soraya has
had no episodes of rejection – the result of a therapy that makes the incompatible compatible and
the impossible a reality in many cases.
Soraya had expected to live a shortened life, dependent on kidney dialysis -- a painful, expensive,
time-consuming procedure that cleans blood well enough to maintain existence but not well enough
to contribute to quality of life.
Physicians in the San Francisco area said transplantation was not an option because a donor organ
would be rejected by her hyper-vigilant immune system – a prospect faced by about one-third of the
more than 70,000 patients on the nation’s kidney transplant waiting lists. But Soraya conducted an
Internet search and found that Cedars-Sinai is one of the very few centers in the nation addressing
this problem.
Tissue compatibility issues exist for all patients receiving transplanted organs, but rejection risks are
dramatically increased for those with high exposure to “non-self” human leukocyte antigens (HLAs).
Exposure may come through blood transfusions, previous transplantation or even pregnancy, when
the mother is exposed to the father’s antigens, which are expressed in the cells of the developing
baby. The immune system is then “sensitized” to those antigens – primed with antibodies to attack,
even if the antigens arrive in the form of a potentially life-saving donated organ.
Stanley C. Jordan, M.D., medical director of Renal Transplantation and Transplant Immunology at
Cedars-Sinai’s Center for Liver and Kidney Diseases and Transplantation, pioneered in the late
1980s the use of intravenous immunoglobulin (IVIG) as a way to reduce organ rejection among
highly sensitized individuals. After undergoing years of experiments and clinical trials, IVIG became
a fully accepted, Medicare-approved therapy in 2004 when it was found effective in a multi-center
study partly funded by the National Institutes of Health.
IVIG modulates the immune system without suppressing it. In fact, says Jordan, the therapy
actually boosts the immune system because the antibodies found in IVIG help fend off
infections. For most of their highly sensitized patients today, IVIG therapy is combined with a
new drug, Rituxan®, which brings treatment time down from about four months to one before
transplantation, and the therapy can be used in both living-donor or cadaver-donor transplants.
Soraya says it may have been three or four months from the time she learned about IVIG and
called Cedars-Sinai to the day of the operation. During that time her mother underwent many tests
to make sure that she was as able a donor as she was willing.
“It seemed like it all happened very quickly,” Soraya says. “My mother and I went to Cedars-
Sinai fairly soon after I talked to them and they tested both of us and said, ‘We can do
something for you.’ I just remember thinking, you’ve got to be kidding me. They can solve
everything? And they’ve done it for other people?”
Soraya’s kidneys were healthy until March 2003 when she underwent surgery for a congenital
heart defect and a major vein was accidentally severed. The 24 units of blood she was given
over the next few hours saved her life, but her kidneys suffered irreparable damage, and along
with all those transfusions of other people’s blood came high exposure to non-self HLAs.
Jordan estimates that about 40 percent of Cedars-Sinai’s kidney transplant patients are in the
highly sensitized category, referred to the program – or self-referred – because they could not
be considered for transplantation elsewhere. “We’re able to transplant probably about 95 to 97
percent of the patients we see,” he adds.
Joan’s donor operation was performed by Gerhard Fuchs, M.D., director of Cedars-Sinai’s
Minimally Invasive Urology Institute. He is one of the few surgeons who specialize in
laparoscopic donor nephrectomy, which requires only a few small incisions to remove a kidney
for transplantation. Minutes after Joan’s kidney was removed, a team headed by J. Louis
Cohen, M.D., began the process of placing it into Soraya’s abdominal cavity and connecting it to
her urinary system. Cohen is surgical director of Kidney Transplantation and medical director of
Operating Room Services.
“This time last year, Soraya was living day to day, extremely ill and with no hope. Now she is
back to herself – healthy, cheerful and energetic,” says Joan, 58. “And this is someone who was
told that she was so highly sensitized that she could never get a kidney. We should have been
totally hopeless, but somehow – I don’t know how – we kept thinking there has to be somebody
doing something somewhere. And as it turned out, it was just in L.A. It’s over for us, but to think
that there are other people, just like us, sitting in clinics, who don’t even have a clue.”
Soraya, who used to teach high school algebra, has been able to go back to work as a
volunteer teacher at Marin County’s Juvenile Hall in San Rafael.
“Somewhere between 25 to 30 percent of patients on the kidney transplant list could benefit
from this therapy to help them get transplanted,” says Jordan. “Patients who are on dialysis and
those who are progressing toward renal failure need to know that they have a right to be
considered for a kidney transplant. Their doctor should refer them to a transplant center even
before they start dialysis so that they can be evaluated and the best treatment options can be
determined for them. Patients who have a living donor do not need to be on dialysis before
being transplanted, and the data show that if patients get transplanted before they start dialysis,
they actually do better.”
# # #
One of seven hospitals in California whose nurses have been honored with the prestigious Magnet designation,
Cedars-Sinai Medical Center is one of the largest nonprofit academic medical centers in the Western United States.
For 18 consecutive years, it has been named Los Angeles’ most preferred hospital for all health needs in an
independent survey of area residents. Cedars-Sinai is internationally renowned for its diagnostic and treatment
capabilities and its broad spectrum of programs and services, as well as breakthroughs in biomedical research and
superlative medical education. It ranks among the top 10 non-university hospitals in the nation for its research
activities and is fully accredited by the Association for the Accreditation of Human Research Protection Programs, Inc.
(AAHRPP). Additional information is available at www.cedars-sinai.edu.
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Its a great idea except for the catch 22 some patient find themselves in. Some have high antibodies but can't get IVIG because they don't have a donor or the one they had backed out. For those people lack of a commited donor with a good crossmatch means no hope of a transplant.
A cadaveric donation is not possible in such cases because IVIG won't be done without the for sure donor.
It must suck.
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It does suck!
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It does suck!
Ditto.
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The article says:
For most of their highly sensitized patients today, IVIG therapy is combined with a
new drug, Rituxan®, which brings treatment time down from about four months to one before
transplantation, and the therapy can be used in both living-donor or cadaver-donor transplants.
So that is my first question. Can this treatment be given to someone who does not have a living donor lined up. Why can't I take the therapy and sit and wait?
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The article says:
For most of their highly sensitized patients today, IVIG therapy is combined with a
new drug, Rituxan®, which brings treatment time down from about four months to one before
transplantation, and the therapy can be used in both living-donor or cadaver-donor transplants.
So that is my first question. Can this treatment be given to someone who does not have a living donor lined up. Why can't I take the therapy and sit and wait?
I'm on IVIg therapy. My insurance company is billed an enormous amount for each infusion. What they actually pay is another story. I am sure that is why it is more difficult to get the infusion without a donor lined up.
I have done it ten times and my counts have bounced up and down. In my case,they came down after a few infusions, but shot back up.
The few people I have heard that are doing IVIg waiting for a cadaver donor are towards the top of the waiting list and have been passed over because of a high PRA count.
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I have been told by 2 transplant centers that because my PRA is 100%, I will always stay at the "top" of the list because the chance of a match is practically 0. The transplant surgeon I talked to last week told me their center does plasmapheresis with IVIG and living donor, because the PRA will just go up again unless you remove the plasma where the antibodies are. I don't care what they do --- I just want to get on with the program! I keep thinking of JillD and how well she is doing now. My inspiration!!
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I think the goal with the Plasmapheresis and IVIG is to best combat the antibodies presented with the living donor (they KNOW what the variables are) and once that is achieved the transplant can take place. Then afterwards the immunosuppressants maintain the numbers, but if the antibodies begin to rise again they will do more treatments to maintain the status quo. At least I THINK I understood that from the surgeon.
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I think you have it right, Karol. I know there were specific "antigen beads" that I was sensitized to with my sister's tissue. I know at Mayo they will only do the positive crossmatch transplants with living donors. They did several crossmatches before, during and after the transplant with mine and my sister's tissue so they knew exactly what they were dealing with.
Paris...you and your son are always in my thoughts and prayers!
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Thanks, Jill. I met with the surgeon at Carolina Medical Center last week. I have completed everything they need on me, and now they are evaluating 3 of my children. The fourth lives in Hawaii, but will move back in July. She says she is the back up plan! We know that Adam is a 5 out of 6 match, but they want to do tests on the others also. I liked how the dr. explained the plasmaphereis and IVIG -- he says they put the immune system in a coma, then afterthe transplant, the system wakes up and realized that something is different (the new kidney) but it isn't sure what, so it just decides to live with whatever it is. Very simplistic,but it helps me explain it to people who have no idea about the procedure. I don't look toofar ahead, but my transplant team seems very postive and wants this to happen. One day at a time, and when I get down, I remember how well you, Jill are doing. You give alot of us hope! :cuddle;
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I'm so happy to hear things are starting to happen again. Sounds like you have raised some great kids (which, of course, is a reflection on their great mom!) :clap; :clap; :clap; :clap;
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I have a question about this IVIG , and its frustrating the hell out of me , pardon my language. So I'm going be seeing a doctor in Houston about IVIG very soon , and hopefully he'll approve me for his program. My question is , I have a friend that got tested and have not heard about the results yet , but he is a O negative just like me. Does this mean if i DO get the IVIG treatment , that he'll have a better chance of matching me? And how dangerous is plasmapherisis? (sp?) .
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I don't know if this will help you or not, but I had the anti-body issue AFTER transplantation with a cadaver donor kidney. I had 12 sessions of plasmapheresis and IvIg and 2 units of Rituxan starting four days after I received my new kidney. I was rejecting so bad that the kidney never started and the rejection was verified by a biopsy on the new kidney. Five days into the Plas/Ivig combo the kidney started to work. I have blood drawn monthly for the HLA lab so they can stay on top of this, but so far so good.
In my opinion plasma pheresis is a walk in the park. Though I have never had dialysis (I dodged THAT bullet) I think the two treatments probably feel very much the same. The blood is taken out of your body, run through a "magic" machine and comes back to you the way you need it to be.
I also feel that plasmapheresis and IvIg were a godsend to me. If they had not been possible, I would have lost the new kidney for sure.
These treatments can't make a "match", but they can control your antibodies.
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Julian, you and I need to just keep bugging these doctors! Why should this all be so hard? I have been trying to get into the IVIG program for a year. They say I would be a good candidate, but no one is doing anything. I am spending hours making calls---again. If they can start me on the program, my chances of getting a cadaver transplant will greatly increase. It all can be so frustrating. I hope you get started on the IVIG and move ahead toward a transplant. :grouphug;
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Julian, you and I need to just keep bugging these doctors! Why should this all be so hard? I have been trying to get into the IVIG program for a year. They say I would be a good candidate, but no one is doing anything. I am spending hours making calls---again. If they can start me on the program, my chances of getting a cadaver transplant will greatly increase. It all can be so frustrating. I hope you get started on the IVIG and move ahead toward a transplant. :grouphug;
Hopefully I'll be approved. Obviously if i DO get approved , I'll let you guys know of the success or failure of the treatment. I still don't fully understand it though, and I don't know WHY you need a prior donor before getting it done if the treatment itself doesn't improve the match , all it does is bring down your PRAs (panel reactive antibodies) . Either way , I'm glad I have someone who already got tested and didn't back out! I'll be going to the Methodist Hospital In Houston to get evaluated btw.
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I think it's about money, as Vandie mentioned earlier in this post. I've had two IVIG infusions since my transplant, and the first one I had at my local hospital was $40,000.00. Of course, it took 16 hours. I just had my second at Mayo in December and it only took 6 1/2 hours.
By the way, when I was at Mayo Clinic in December for my yearly checkup, my doctor told me about a new drug they were testing that actually goes in and kills the specific antibodies. That means no plasmapheresis and I assume no IVIG (for my transplant I had plasmapheresis followed by IVIG every day for two weeks prior to transplant and two weeks after). Mayo has permission to do 20 transplants using this new drug; they have done 5 so far and it looks very promising; none of the evil antibodies are showing up on the post-transplant biopsies! My doctor at Mayo is Dr. Gloor and my surgeon was Dr. Stegall - they are both very involved in research on antibodies and how they are involved with graft rejection. Dr. Stegall was actually the one who whose research is behind the development of the new drug they are testing. It could be very promising!!!
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Jill,
That does sound promising. I have PRA's of 96% and am O possitive so new treatments for high anti-bodies are something I'm holding out for. Hope it happens soon cause I don't know how much longer my kidneys are going to hold out.
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I just got approved for all the testing for IVIG! I'll be spending a week getting a complete pre transplant work up, and hopefully I'll start treatment! One step at a time, but I'm very excited :clap;
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:clap; YAYYYY!!!! :clap;
Congrats!
I hope the best for you!
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Good news for you and your donor. Wishing you the best.
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That's great news!
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Good news for you and your donor. Wishing you the best.
Unfortunaley I didn't have a donor =( they're doing the IVIG by itself , but i'm lucky to have it that way still!
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I have a question about this IVIG , and its frustrating the hell out of me , pardon my language. So I'm going be seeing a doctor in Houston about IVIG very soon , and hopefully he'll approve me for his program. My question is , I have a friend that got tested and have not heard about the results yet , but he is a O negative just like me. Does this mean if i DO get the IVIG treatment , that he'll have a better chance of matching me? And how dangerous is plasmapherisis? (sp?) .
It depends on what you mean by match.
One can match several antigens with a donor but still have a positive crossmatch occur.
IVIG is done to help eliminate any reaction to the donor kidney thus producing a negative crossmatch which would enable the tx to occur.
A question to those that have had IVIG route done with plasmapherisis and Rituxan. How great are the risks of getting cancer because of the Rituxan effects on the immune system vs not getting Rituxan?
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Considering that the anti rejection drugs may lead to cancer themselves, and pretty much having high risks on being on dialysis it self (heart problems, blood pressure problems , teeth problems to name a few risks of being on dialysis) I say that it's worth risking in trade for a kidney transplant.
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I have been tested against 9 people and all have fallen through because of antibodies...
I feel abit embarrassed because that all I know , I have had meetings with my coordinator a few times and have never known what to ask her...
I am going to make an appointment tomorrow and I NEED to know what to ask, I have never heard of the IVIG test and they have NEVER mentioned this .. If ANYONE has suggestions for questions that I need to ask PLEASE let me know
Also what is... PRA's
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http://www.umm.edu/news/releases/highpra.htm
Here's an explanation. In general, the higher your PRA (panel reactive antibody) count, the higher the chance that the body will actively seek to reject the transplant by attacking it as foreign. I like to think that I'm tolerant even on the cellular level since I'm very lucky to have a PRA of 0% especially after a long transplant and a couple of blood transfusions.
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I have never heard tell of this, and have no idea what my number is...
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Ask your trx coordinator. If you've been tested against 9 people but not approved because of antibodies my guess is that you have a relatively high PRA. If you have a living donor then they can try to get rid of them with IVIG treatments.
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Monrein
I just started reading about that today, why would they NEVER have mentioned IVIG treatments? They do that in Ontario do they?
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Kim,
I don't know this for sure but it could be the cost. When I got my first bill for an IVIG treatment I about :puke; ! That stuff must me gold plated...BUT...the new kidney I got was NOT working and now it is....so I'm not going to complain. MUCH! :)
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Wenchie, we don't pay, now they might not be talking about it because of cost, but I can't see that...
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Kim, I'm pretty sure they do this in Toronto although I have no first hand knowledge since I don't need it. Ask your neph about it though and ask which hospitals do it. As far as the cost goes, I don't think that would be the problem here in Canada as it will still cost the health care system less to provide the IVIG and a transplant than to keep you on D. Good luck Kim.
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Update..
I called my coordinator this morning, seems like Halifax doesn't use the PRA's numbers any longer, seems like I have multipal antibodies...
Seems like Halifax doesn't do IVIG treatments, but they do it in Toronto... Blah blah blah
I will keep you all posted
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Kimmie, if you have a living donor, will MSI (Nova Scotia's health care system) pay to send you out of province for a transplant and IVIG? Come to Toronto, that would be fun and we can hang out.
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I guess they do send people to Toronto for the treatment...
My coordinator didn't want to get to into it because she said I should ask my Dr. gawd what the heck is a coordinator for. MSI would pay I am sure, but its something that I will look into. It seems the more answers I get on-line the more questions I have, and this is my third year, you would think that I would know everything already
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PS Its a deal if I do treatments in Toronto, we will hang!
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Not all centers to the IVIG therapy. The west coast has been doing it longer than the east coast. It seems like there is a whole East coast/West coast thing. Sounds like gangs! Vandie got a kidney from the list after having IVIG. She is our expert in the field. :thumbup;
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So I went to Houston on Monday and saw all the doctors, from head to toe. Everything was fine! The hearts a tickin' nicely , my bladder is awesome , everything is good! The doctor were all just fine! The doctor said my sister was probably not a good match for the IVIG since I have already developed antibodies that cannot be fixed, and they are specific antigens. But I had another donor , and he said he might be a good match. They are all going have a meeting this thursday to find out what my gameplan will be. Hopefully my donor will be accepted for the IVIG and everything will work out , if not , they will administer IVIG to me every two weeks up until I do get a transplant (and who knows when that will be) so I hope thursday the problem will be fixed. I'm just nervous, anyone else been through this procedure and gotten this nervous?
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I guess they do send people to Toronto for the treatment...
My coordinator didn't want to get to into it because she said I should ask my Dr. gawd what the heck is a coordinator for. MSI would pay I am sure, but its something that I will look into. It seems the more answers I get on-line the more questions I have, and this is my third year, you would think that I would know everything already
Kim - my original transplant center in Michigan pretty much said I couldn't get a transplant when they discovered my PRA was so high. I found out about the treatment from some information I read right in their waiting room!!!! When I asked about it, they said that it was experimental and expensive and they didn't do it. A few months later I found out that Mayo was doing positive crossmatch transplants, so I called and got an appointment there for an evaluation and they did the transplant.
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Thought I'd update and say I was approved for the Houston transplant program and IVIG! I'll be getting IVIG! :2thumbsup;
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:2thumbsup; Excellent Julian.
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Thanks ! Hopefully it'll work out well from there, but i'm just too happy right now!
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Of course you are and I'm delighted for you also. :bandance;
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Julian, this is good news for you and I'm glad it will work out.
Five years ago my transplant center at Stanford did not do IVIG but when I talked to them last week they said now they do and I'm trying to see if it is something I can pursue. My PRA's is 96% which will make me hard to match without IVIG. Hearing your experience regarding this issue is educational. Keep us posted.
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Hopefully you'll get approved! Obviously at 96% anti bodies , I don't see why you wouldn't be able to get approved! Obviously keep me posted about your situation too. I'll definitely write about my IVIG experience from every step, to the side effects and them administering it.
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Congradulations julian230 :bandance;
I know how you feel about being 'just too happy'
Just yesterday, my s/o got refered to evaluation at Virginia Mason.
Ray (my s/o on dialysis) asked me why I was crying. Cuz it's a little glimmer
of hope from the rollercoster life we've been on!!!!
Carry on with being JUST TOO HAPPY!!! ;D
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So I got some great news today! About the IVIG. I'm in this new study , in fact only 2 people are in this study (This woman from England and me) , that will destroy the SPECIFIC antibodies! It will kill the source of it. In fact, the only time I'll need the IVIG is when I need to maintain the low anti bodies count. I start this Monday , I'll be staying up in this place for a week getting this session. I believe there is 3 or 4 cycles (don't quote me on that) and during that time I'll be getting this medication through I.V for 5 minutes ! They actually said that I might be able to accept a kidney from my sister (which is big news! Because I've developed antibodies because of a previous transplant from my mom). This is all very new and I feel extremely lucky to be one of two people doing this ! They did a study on 6 people , and it was a success on all 6 people at another hospital. Hopefully this will be it! I'll keep you posted on treatments!
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Since I'm terrible of explaining things , here is the article
http://docs.google.com/gview?a=v&attid=0.1&thid=11f667ed309b6354&mt=application%2Fpdf&pli=1
on what I'll be receiving.
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congrats Julian. It all sounds good. I don't seem to be able to get to the article via google docs. Is there anything on the web about it?
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Julian that's fantastic. I feel very excited for you and for all the patients who will eventually benefit from this treatment.
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Awesome Julian! I will be following closely :cuddle;
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Great news! We are very excited for you :2thumbsup;
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Thank you! Thank you all ! This is obviously most beneficial to those who have had previous kidney transplants , or have had any types of birth or any other reason to raised PRAs. So the article is not working ? The medication is called Velcade , or bortezomib . (Take that spell checker!) Google that , +transplant. That might be more helpful.
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In case you don't have time to peruse the internet all day looking for the GOOD articles , here they are
http://www.guardian.co.uk/lifeandstyle/besttreatments/2008/dec/30/new-treatment-shows-promise-for-kidney-transplant-patients
http://www.healthcentral.com/newsdetail/408/622609.html
http://myeloma.org/main.jsp?type=article&id=1201
https://trialx.org/clinicaltrialinfo/81850/kidney-transplant-velcade-high-immunological-risk/
http://www.health-journal.co.cc/2009/01/kidney-transplants-patients-can-be-help.html
Alhough I'm sure it repeats itself.
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Wow, this is very cutting edge stuff. It seems to be gaining very widespread attention, very quickly. Are you at the hospital where they did the original trials? It's great that you hooked up with docs who are involved in the next phase. You will definitely have to keep us posted about this journey. :cuddle;
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Unfortunately I'm not at a hospital does did the original trials. The original trials were at the Cincinnati hospital, and than I believe the Mayo Clinic did some studies too, but with every news I got bad news today . Today they told me they might have to hold of because the insurance company (of course) does not want to pay for it because it is considered experimental. Which is funny , because IVIG cost something like 50k while this drug cost 13k (considerably cheaper) . We are hoping that the doctor who wants to try this stuff out will write a letter of how much he believes this will work, but for the mean time, it will NOT be tried out yet on me I absolutely HATE this roller coaster ride of "yes , no , yes , no ... this drug that drug" . I wish it was as simple as Yes you'll get it ! But nooooooooo! Oh well! I'll keep you guys posted .
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Sorry that the news was not what you were hoping for today. Maybe the doc's letter will help. :cuddle;
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My mother had a positive crossmatch transplant in June at Mayo Clinic. She was given the drug Jill spoke about and was the first person to receive it. Her antibodies are at low levels and she is doing great. She had plasmapheresis and IVIg. Her doctors are Dr. Stegall and Dr. Gloor also. I hope everything works out.
Beth
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Beth36, do you remember the drug name? Was it experimental? How she end up getting it?
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Juilan, the name of the drug is eculizamab....it was something the doctors at Mayo decided she needed to try because of her high antibodies. It protects the new kidney from being attacked after the transplant. She had to have it because her PRA was high....it fluctuated some but never went down really low. She was given IVIg before the transplant for a day. Then, she had the transplant. The drug was administered for a few weeks every couple days until she went home from Mayo. By home, I mean when she was able to leave the state of Minnesota and go HOME. She stayed at Mayo for a long time but my parents rented an apartment in a building near the hospital. They used this drug on other transplant patients, just not on kidney transplant patients. My mom was participating in a study and they told her she was the first person to receive this drug and she was considered a success. Now that she and a few others now have used it, they are hoping to get FDA approval for the use in kidney transplant patients. I don't know if it's considered experimental, per se....it is used, just not in kidney patients until recently. I so hope you find answers and get to use the meds you need for your PRA and transplant.
Beth
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I have 98% antibodies.They said finding a match would be slim and none.And slim was on vacation.All my kids and my sisters were tested.Then I have a sister that my Mom adopted.She has had sooo many miscarriages(too many to count) and she has 3 living children.She kept saying that she was my match because she probably has so many antibodies too.She is my match.We are waiting for her 24 hour urine test results.But so far so good.We go to class April 9th.So there is hope.
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Oh Pam! Congrats!
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Pam that story gives inspiration that ANYTHING is possible! Thank you. Beth thank you for explaining all of that info to me.
The insurance (and surprisingly) approved the drug Velcade! So they I can start , this is the longest road I've been in my life, and there is a hundred more miles of this road .
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Wow Julian, this is great news! If you can just take it one day at a time, before you know it you will be looking back. :cuddle;
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, this is the longest road I've been in my life, and there is a hundred more miles of this road .
Yes indeed, but you just hitched a ride and peeled off a good chunk of it. :thumbup; Excellent news Julian.
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Hi there
I finally get to respond after almost 2 years :)
It is not true that IVIG will only work with living donors. 3 years ago when I was getting my transplant and doing IVIG there was a young man at Cedars who was also doing IVIG but had no living donor. The idea was to keep his PRA down so that when a matching donor came up he'd be able to take the kidney :)
So you CAN do IVIG without at living donor, at least at Cedars.
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My :twocents; At my yearly round of tests yesterday at the transplant center, the surgeon said "with your PRA you will never get a call, we have to do something to improve your chances" We went through all my history--listed at two centers and why. Living donors tested and denied. So, he is going to do high dose IVIG therapy with Rituxan to see if my PRA will go down at all. It will increase my chance for a cadaver kidney. The Rituxan is used in chemotherapy for non-Hodkins lymphoma. It kills b-cells and helps to "erase the memory" and hopefully reduce my antibodies. It will be given once a week,for 8 hours, for a month. The Rituxan causes the side effects you have with any chemo. And they have to overload you with fluids to administer it, but the surgeon feels it is worth trying and I will be well monitored. He said I was the most informed patient he has had and that is why he is willing to try anything to help me. He can tell I am committed and compliant and educated. Thank you IHD! And yes, I told him about the forum! He has a very serious face. He looked at me and said"this is me laughing" :rofl; He loved the sites name. So, tell me your opinions--good and bad. I have stopped thinking about a transplant for awhile and know this might not make any difference. I am not thinking this is a miracle. But, another step in the whole process. I am between hopeful and scared. And stressed. I know, breath deeply!!
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Paris,
I hope this works for you. I have the same issue with my highest PRA at 96%. They now do IVIG at Stanford but have told me I need to be nearer the top of the transplant list for them to consider giving me the treatment. I have been on that list for 5 years now.
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Sunny, that is what another surgeon told me last year. Luckily, this year the meeting was with the surgeon who is the head of IVIg and plasmapheresis department. He says the program doesn't have the best results, but he is now hoping I will change his statistics! The other two centers I have been with, would only do it with a living donor. The surgeon wants to try this first; if it makes a difference then he will work up the people who went through the origiinal evaluations three years ago and see if we still get a 100% pra. It is all a long process, isn't it? This all happened by chance. My co-ordinator didn't let me know they had even started the program. Not sure what her job is except to "co-ordinate" my appointments. :rofl; I know it doesn't work for everyone. We shall see. I think I would try anything.
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Paris I think it is great. Anything to try and increase your chances at a transplant is worth a go. Once you start dialysis you will have a different perspective of getting a transplant.
I think I would try anything.
I know I would try anything. My PRA is fine it's my HLA genetic markers that are the problem and I can't do anything about those. :banghead;
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Sunny, that is what another surgeon told me last year. Luckily, this year the meeting was with the surgeon who is the head of IVIg and plasmapheresis department. He says the program doesn't have the best results, but he is now hoping I will change his statistics! The other two centers I have been with, would only do it with a living donor. The surgeon wants to try this first; if it makes a difference then he will work up the people who went through the origiinal evaluations three years ago and see if we still get a 100% pra. It is all a long process, isn't it? This all happened by chance. My co-ordinator didn't let me know they had even started the program. Not sure what her job is except to "co-ordinate" my appointments. :rofl; I know it doesn't work for everyone. We shall see. I think I would try anything.
It is definitely worth the try and I am thrilled that you have that chance.
I think you have to be your own coordinator and let that other gal be your secretary.
Much love. . . .
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Paris, I am excited that something is happening towards your transplant.... remember you are not in this alone
Your transplant bud in Canada ;)
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Paris...maybe you will get lucky with Rituxan like I did. They gave me pre meds of benedryl IV and simple tylenol and I never had any side effects. It is so worth it to get your "shot". ya know?
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Elizabeth, this is great news that some action is happening in your quest for a transplant! It pays off to be well informed and proactive. Love and hugs to you!!! :cuddle;
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Paris,
I hope this works for you. I have the same issue with my highest PRA at 96%. They now do IVIG at Stanford but have told me I need to be nearer the top of the transplant list for them to consider giving me the treatment. I have been on that list for 5 years now.
Go to CEDARS!!! The woman, Dolly Tyan who helped create the high dose IVIG protocol with Dr Jordan at Cedars is now at Stanford. My mom and I are friends of hers, due to our trying to get the word out about IVIG, and she has told us that Stanford really isn't interested in using the protocol at this point they feel it is too cost ineffective and time consuming. At Cedars you should be able to get the correct treatment. I'm from N. Ca and had my transplant at Cedars 3 years ago after being denied at UCSF, Stanford and California Pacific due to my high antibodies. Even though it sounds like you do not have possible living donors you should get listed at Cedars and start your path there too! You can be listed at more than one hospital in more than one region as far as I know :)
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Hi Soraya,
I came upon your site Seven Lucky Stars back in Sept. 2007 looking for help for my daughter, Sarah who had a living donor but he couldn't donate because her antibodies were to high. I sent you an email asking you about the IVIG treatment. I remember receiving a reply Oct.2 2007 either from you or your Mom, just a day after my daughter passed away. I just sat there and cried because there was hope for Sarah way back in 2004 because Medicare would pay for the treatment at Cedar's. We were declined payment by Medicare at the S.D. transplant center in 2006 possibly because they were trying to start their own protocol for the treatment. It still upsets me that no one ever told us about Cedar's.
I am very glad though that you and your Mom are dedicated in spreading the word. You are very special people!
Pam
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Hi, I'm new here and just started the IVIG treatments in an experimental trial here in Cincinnati, OH. I do my second treatment on Thurs. and then 2 more next week, this is phase one, if it doesn't lower me enough to match my donor (my daughter) then I go into the second phase of treatment wihich is another month but more intensive treatments. The research team is very excited and hopeful that this IVIG will be approved by Medicare and help thousands of kidney patients with high antibodies. I am not on dialysis yet, very close and hopefully this IVIG will let me skip dialysis and go straight to transplant....I am 98% so this is worth the try for me. Since this is a trial it doesn't cost me anything and they are only testing 50 people and I am #19. I am very blessed. I will update but won't know if it is working until end of Aug.
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finished the first phase of the IVIG treatments, had several side effects but nothing I couldn't deal with so that is good. Now I do a blood work up Aug. 31 and they will see if the treatments have worked if not on to phase 2. They think this has workedin the first phase for one man in the trial in a similiar situation to me with a donor and one high antibody so I am crossing my fingers...as the rest have had to go into the more intense phase 2. :thumbup;
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Hoping you have good results. :thumbup;
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Finished the first phase of treatment and it lowered my antibodies by 30%, still not low enough as I was at 98% but it is working. I start 2nd phase of more intense treatments on Monday every Mon. & Thurs. for 4 wks. It is low doses of IV chemo, one chemo infusion for 4-6 hrs. and 3 blood cleanings and hopefully in mid Oct. I will be down low enough to receive my daughters kidney.
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Finished another phase of IVIG....had last Velcade treatment Thurs....thank goodness, sure didn't enjoy all the side effects. Now I have 3 Plasmapheresis (which I'm scared about as I don't do dialysis yet) and I will know the results end of Oct. All I know is that my 98% antibodies are down 30% after the first phase so they are very hopeful mine will drop enough and they have had one successful person that will get her transplant and 2 people that can't get from their donor but have moved to the top of the deceased transplant list so finally some success and I plan on being the 2nd to get their donor kidney! :2thumbsup;
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It is always good to hear about good results. I know you must be very excited. The side effects can be yucky, but it will all be worth it. :thumbup;
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phyl1215, don't be scared of the plasmapheresis. I had 5 of them in two weeks before my transplant when undergoing the protocol to reduce my antibodies and 4 after my successful transplant during my only antibody rejection episode. It doesn't take as long as IVIG. I was uncomfortable from my reaction of the reduced calicum - it made me feel very weak and off but I was on dialysis and not very strong then. The first couple were OK but the last two were worse. During the second series I had no reaction at all other than needing a nap after since I felt tired. Your hospital should give you something to help the calicum problem if it occurs with you - here at home the hospital gave me tums to replace the calicum which didn't work as well as the second series in toronto hospital where they inject calcium into the solution. This may not make sense but it will when you go through it. Probably the hardest thing was the insertion of the lines that are used to do the plasmaph. I should have asked for some atavin to ease me through the first time. If you don't have it in yet, ask if it can be inserted under ultrasound guidance - it was better that time.
It was all worth it since it worked. My donor (my husband, my hero) and I became a perfect match with the IVIG and plasmaph. - TGH doesn't give the velcade. (You also have to have a donor even though we were very far apart with my antibodies) I did have the one antibody rejection episode 10 days after the transplant which meant some heavy steroids, more IVIG and more plasmaph. over 8 days but it settled everything and I am very well 7 months later and they have reduced my medications to reasonable levels - the side effects are there but SO much easier to cope with than dialysis and I feel way better than I did as I was in Late Stage RF.
I hope this helps and I hope that more of you out there get to have a transplant through this amazing process. I hope I haven't given too much information. I'm new at this. But I read this thread a lot as I was going through it. You helped so much.
cheers. Mary
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I had plasmapheresis twelve sessions post transplant due to donor specific antibodies. Felt a bit weak after each session, but other than that, no big deal. If I got dizzy during the session they fed me tums to bring calcium levels up. It's SO worth it to get and/or keep a donated kidney!
Good luck!
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Good ol plasmapharesis, had 30 days of it back in 99 due to TTP, the cause of my kidney failure and saved my life. Having the "couple" for the superkidney of Allan's was a breeze.....
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Thanks for the info and support everyone. I have now had my second plasmapharesis and the last one this coming Monday. I had to have the cath put into my neck with 2 tubes hanging for the machine to hook up too. The session went fine, 2 hrs. and I only had a blood pressure drop the first time and they corrected it quickly. What an amazing machine and it really shocked me that I didn't feel anything! I will be glad when it is finished though. The project has done only 20 people so far and had 2 that will get transplants and two that got to the top of the transplant list and they are very hopeful I will get my kidney. So there is good success so far and they told me if this trial works it will change the way kidney patients will be treated....very exciting to be part of this. I do feel a bit more tired after this second round but otherwise doing OK.
Thanks again!
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:thumbup;
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:bandance; Finished with the treatments!!!! Have a couple more blood tests and will know the results around Oct. 28. Glad it's all over. :yahoo;
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I am glad they are over for you also. Let us know as soon as you get the results. Sounds like it is all working for you and that is great. :cuddle;
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I hope your results are good and I've got my fingers crossed for you.
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They moved my last blood work up to Oct. 20 so I will know a little earlier. I have had a bad week with side effects from the Velcade (chemo) seems the plasamaphaersis might have been the cause of this flair up. My legs ache and feet feel numb/tingling and like I always have a pair of socks on. I can't hardly sleep over 1 hr. at a time and finally started taking some Tylonel which helps a little and today got some Hydrocodone from the kidney Dr. so I can get some sleep. My hands were doing the same thing but are pretty much normal right now and the feet do seem to have more feeling so I think this is very slowly going away, I hope so. There is one other person in the study having the same problem so at least I'm not by myself....just wish it would stop, I hate having to rely on these pain pills but hopefully tonight I can get some sleep. :yahoo;
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I hope the 20th brings great results for you :2thumbsup; I'll be waiting with fingers crossed :cuddle;
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Well, I'm still waiting on the 25th. Hopefully first of this week I'll hear....nervewracking!!!! :pray;
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The treatments did not lower my antibodies enough to receive one of my daughters kidneys. They want me in a new trial starting in Dec. to try and lower them more but not chemo and less side effects. So they are not giving up and neither will I. Just wanting this tingling and numbness from the last treatments to finally go away, it is really hard to walk, type, sleep and in general have a "normal" lifestyle. I will keep you all up to date as things progress, thanks for all the prayers and support. The treatments did lower my antibodies some so I am in a better position on the transplant list now, so some good did come of it all. Also found out the name of the study I was in was B-Cell Trargeted Desensitization Strategy not IVIG which is on one of the papers they gave me..... The IVIG is what I will start in Dec. very confusing.
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Any change in the PRA is good news. I did both IVIG and Rituxin(kills the b-cells). Unfortunatley, they didn't make a difference in mine. I will keep praying the next round of treatments make more of a difference for you. Keep looking forward! :cuddle;
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It takes a brave person to go through with any of these PRA reducing treatments. Hats off to those of you who have tried regardless of the outcome. I do hope the next round of treatments will be successful. Good luck.