Preparing for transplant

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matrix
Posts: 2
Joined: Sat Aug 23, 2014 10:21 am

Preparing for transplant

Post by matrix »

Hello everyone,
my wife is planning to be the donor for her sister. We're now in the screening phase and the important results are:

- lymphocyte crossmatch is negative

- HLA-A result are matching, while HLA-B and HLA-DR are not

- Donor proteinuria from the 24h urine test is 286. Normal levels are less than 150, but the doctor said less than 300 is OK for transplant

- They have both the same blood type.

I would like to ask from people that have done the transplant if the chances of a positive transplant from the above tests are good or not. The doctor is saying that it has high possibility to be successful, but I'm not so sure.

Thank you
Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Re: Preparing for transplant

Post by Soobee »

Hi Matrix,

I know my husband did a lot of reading up about the HLA matching as two of my three pairs have the less usual proteins making a good match a slim chance.

Whilst I can't even pretend to begin to understand it (and each case is so individual you will never find a clear answer online) I think that the 3 HLA pairs have massively different numbers of possible missmatches, e.g. there are say 10 possible proteins in the first pair but over 50 for the second pair and the same for the third. I think this weights the way you match (or missmatch) to the donor - so 011 might be bette than 110.

We have another appointment booked with the Dr in charge of the pairing to ask a few more questions, I would see if you can do the same. Read up as much as you can and don't be afraid to ask lots of questions, the one thing I have learnt the hard way it that if you don't ask now you can't go back and change it. So far I have found that as long as I'm polite and make it clear that I just need it explained so I'm happy with the decision they are fine going into a bit more detail.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Preparing for transplant

Post by rheaybou »

I had a living donor transplant, without going through the numbers it was an average match from a family member.

Nothing is certain in life, the best possible match could reject or not start working and poor match could last 40 years. The skills/knowledge of the transplant team is second to none. They would not put your wife through surgery if they had any doubts.

Are your doubts about it beeing positive based more on your fears that your wife will go through surgery and it may not work? Sitting on the opposite side I had many a sleepless night thinking if accepting my donors kidney was the right thing to do.

Good luck to you all, it is a very emotional time for all involved and not just the donor and recipient.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
matrix
Posts: 2
Joined: Sat Aug 23, 2014 10:21 am

Re: Preparing for transplant

Post by matrix »

Thank you all for the replies. I found a graph here http://www.livingdonorsonline.org/HLAData.htm that helps a lot to understand the importance of HLA matching (it's not that important). So I will try and get your advice to trust the doctors.
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: Preparing for transplant

Post by Tibbs »

Bear in mind that the doctors who assess the suitablility of your donor have to be separate the recipient's doctors to ensure that they are impartial. They also start from the position of 'this person is NOT fit to donate' and work to demonstrate that they are, rather than the other way around.

As for suitability, I was told that a kidney from the worst possible match from a live donor has a better life expectancy than a deceased donor.

Best of luck with the journey. As you can read on here, sometimes it's all smooth sailing, and for others it's a bit of a rollercoaster!
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Preparing for transplant

Post by MatthewC »

matrix wrote:Thank you all for the replies. I found a graph here http://www.livingdonorsonline.org/HLAData.htm that helps a lot to understand the importance of HLA matching (it's not that important). So I will try and get your advice to trust the doctors.
The survival rate graph in your link is very useful. I was told that the relevant factors include genetic match (close blood relative), tissue type match, living/cadaver donor, dialysis (better if recipient is not yet on dialysis) and donor age (young is good!). All of these factors involved affect the chance of survival - usually just a few percent less or more - and they all add up. In some cases you can receive a kidney of a different blood group and I think that affects the post transplant medication as well as the survival rate.

But all this is just the probability, it says nothing at all about your own specific case. There are people who matched perfectly on all counts and the kidney never really functioned; similarly there are people who hardly matched at all yet it survived for ages. I donated last year to my brother when I was 61 and he was 54, and all the above factors were in his favour apart from my age! Even so, I was still worried (totally needlessly) that my kidney might just refuse to work in him.

As a donor, I think that if you have a potential donor then say "thanks very much" and go ahead with it; as rheaybou says above, if the donor is not suitable in any way they will not let it go ahead, and I think that you must trust them on that decision. Also trust them to be very skilled and caring people who will not risk wasting their expensive time when there's a queue of patients needing their attention.
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