Update/Bad news

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Update/Bad news

Postby Sandra » Fri May 14, 2004 1:57 am

My husband Jim started back to PD last weekend because it was just a leakage not a herina but today we got some bad news today and is pretty upset. Thought that maybe I could get some advice from someone who has had more than 1 transplant. Today we found out that his antibodies are at 99%, Class 1 & 2 <--- what ever that means. Now because of the high percentage that basically means that the chances of getting a transplant is slim to none less and hoping there is a miracle that there is someone or sometime there will be a match. I understand that there are people (Jman I think you did) received a second or even third transplant. I am looking from some type of light at the end of the tunnel. :( After hearing the news from the hospital he was talking stupid. He said that they are basically saying that there is no chance for a kidney transplant. Sorry if this message has not make sense but I am not trying to be too upset myself. (you know be the stronge one -- right Julie) :cry:

There would I find more out about the HLA?

From upset
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Postby JMan » Fri May 14, 2004 9:07 am

Hi Sandra

http://www.talktransplant.co.uk/Donor_I ... yping.aspx

Is somewhat useful in explaining the process of Tissue Typing and HLA Antigens.

http://www.talktransplant.co.uk/transca ... f09%2f2003

Explains a little about 'plasmapheresis' being used to reduce antibodies..

AFAIK it isn't 'new' per se, but some of the refinements and uses of this particular type of treatment are.. There are, I believe, also some cost elements involved in its availability:(

However, never say never.. I'm on my 3rd transplant. surprisingly antibodies weren't a problem but that may be due to previous chemotherapy I had. See also research on 'Campath H' and transplantation.
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Incompatible Kidney Tx Program

Postby Rachel in NY » Fri May 14, 2004 1:46 pm

Hi Sandra!

Hearing that news was a shocking, bc that's exactly what it was - a shock! After the intiial blast is over though, you will see that there IS hope at the end of the tunnel, and there are things that can be done.

you're from Canada, so I don't know how much of an issue it would be to come to the US for treatment. Johns Hopkins has an Incompatible Kidney tx program. They actually have a few different programs, including plasmapheresis, and a "paired kidney exchang".

Click on this link - http://www.hopkinsmedicine.org/Transpla ... index.html for more information and to read up about this stuff.

Some other hospitals are doing parts of what they're doing... but I don't know who/what in Canada.

You're feeling a bit down now, but its gonna get better! :)

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sorry to hear the news

Postby amanda in CA » Fri May 14, 2004 6:12 pm

Hi, Sandra, unfortunately an antibody level of 99% means that your husband's chances of a transplant are slim since he will be looking for a perfect match transplant. Mine are at the same level. What an HLA of 99% means is that your husband's blood, were it cross-matched against the whole population would show a reaction against 99% of that population. There are a number of units doing plasmapheresis ('washing' the blood of antibodies) including John Hopkins Hospital. The University of Maryland Hospital is also doing it, but from talking to them I understand their way of determining a person is suitable (ie if plasmapheresis is likely to work) is slightly different than for John Hopkins which I understand determine it solely from the PRA level (although you would need to check this out with them to be sure). U of M do a titre when they do the crossmatch and if it is below a certain value then it is deemed that plasmapharesis will work. In both instances though your husband will need a suitable live donor, U of M specify this has to be an immediate family member (e.g. father, mother, sibling). It is worth asking anyone in the family that you can think of to be tested who could donate since there is the possibility that they not carry the antigens which your husband had antibodies against. It is tough news I know, my mother, brother and father have all been tested now and I have a positive cross-match with all of them, so my back is pretty much up against the wall and I too am exploring the plasmapheresis avenue. Best wishes, love Amanda
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Sandra sorry to hear u news :(

Postby Elaine » Sat May 15, 2004 1:30 pm

Sandra read u post sooo sorry to hear your news about u husbands anti-bodies etc. I dont really know wot to say other than as other people have pointed out there always is some hope -no matter how small it may be. But know wot u mean just feel like u probably in shock and despair at the moment. Drs seems to have a way of keep hitting you with bad news and you wonder how much more people can take. :(

Glad to hear that hes managed to get back onto P/D at home :lol:

Just want u to know that we are all thinking of you from all over the world ;)

best wishes n luck to u Elaine & Rachael UK ;) :roll:
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