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Author Topic: IVIG- Treatment for HIGH ANTIBODIES so you can GET A TRANSPLANT!!!!!  (Read 33628 times)
slk76
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« on: April 20, 2007, 11:00:17 PM »

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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« Reply #1 on: April 24, 2007, 10:58:23 AM »

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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paris
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« Reply #2 on: April 24, 2007, 01:26:09 PM »

It does suck!
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carson
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« Reply #3 on: May 01, 2007, 12:06:56 PM »

It does suck!

Ditto.
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2009 infection treated with Vancomycin and had permacath replaced
2009 septic infection that wouldn't go away
2007 began Nocturnal Home Hemo with Permacath
1997 began Peritoneal Dialysis
1982 had cadaver transplant
1981 diagnosed with GN2 and began Peritoneal Dialysis
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« Reply #4 on: May 02, 2007, 01:30:36 AM »

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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vandie
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« Reply #5 on: May 02, 2007, 07:49:48 AM »

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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Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
paris
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« Reply #6 on: May 02, 2007, 04:56:05 PM »

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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okarol
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« Reply #7 on: May 02, 2007, 05:07:31 PM »

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.
« Last Edit: May 02, 2007, 09:06:29 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jill D.
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« Reply #8 on: May 02, 2007, 08:10:42 PM »

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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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
paris
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« Reply #9 on: May 03, 2007, 03:19:45 PM »

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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Jill D.
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« Reply #10 on: May 03, 2007, 08:26:05 PM »

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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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
julian230
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Ah cha cha!

« Reply #11 on: January 06, 2009, 11:18:07 AM »

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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Wenchie58
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« Reply #12 on: January 06, 2009, 11:32:48 AM »

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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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
paris
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« Reply #13 on: January 06, 2009, 12:54:53 PM »

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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julian230
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« Reply #14 on: January 06, 2009, 01:59:30 PM »

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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Jill D.
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« Reply #15 on: January 06, 2009, 06:26:01 PM »

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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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
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« Reply #16 on: January 07, 2009, 03:45:25 PM »

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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julian230
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« Reply #17 on: January 08, 2009, 09:55:48 AM »

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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« Reply #18 on: January 08, 2009, 10:10:08 AM »

 :clap;  YAYYYY!!!!   :clap;
Congrats!
I hope the best for you!
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
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Sunny

« Reply #19 on: January 08, 2009, 01:42:56 PM »

Good news for you and your donor. Wishing you the best.
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Sunny, 49 year old female
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Jill D.
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« Reply #20 on: January 08, 2009, 06:10:04 PM »

That's great news!
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
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Ah cha cha!

« Reply #21 on: January 09, 2009, 08:40:30 PM »

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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BigSky
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« Reply #22 on: January 09, 2009, 08:59:59 PM »

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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Ah cha cha!

« Reply #23 on: January 14, 2009, 08:10:38 AM »

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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« Reply #24 on: January 14, 2009, 12:34:11 PM »

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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