IVIG- Treatment for HIGH ANTIBODIES so you can GET A TRANSPLANT!!!!!

[monrein]

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.

[kimcanada]

I have never heard tell of this, and have no idea what my number is...

[monrein]

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. 

[kimcanada]

Monrein

I just started reading about that today, why would they NEVER have mentioned IVIG treatments?  They do that in Ontario do they?

[Wenchie58]

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  !  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! 

[kimcanada]

Wenchie, we don't pay, now they might not be talking about it because of cost, but I can't see that...

[monrein]

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.

[kimcanada]

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

[monrein]

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.

[kimcanada]

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

[kimcanada]

PS Its a deal if I do treatments in Toronto, we will hang!

[paris]

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.   

[julian230]

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?

[Jill D.]

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.

[julian230]

Thought I'd update and say I was approved for the Houston transplant program and IVIG! I'll be getting IVIG! 

[monrein]

   Excellent Julian.

[julian230]

Thanks ! Hopefully it'll work out well from there, but i'm just too happy right now!

[monrein]

Of course you are and I'm delighted for you also.    

[Sunny]

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.

[julian230]

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. 

[breezysummerday]

Congradulations julian230     

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!!!   

[julian230]

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!

[julian230]

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.

[pelagia]

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?

[monrein]

Julian that's fantastic.  I feel very excited for you and for all the patients who will eventually benefit from this treatment.