Not sure what to do ... pls help

[Lyuda]

Hi,
I am new here.. I am 40 years old and knew about my condition for a long time....  I am on the transplant list for almost 2 years at John Hopkins. I am not on dialysis and my husband  approved to be my donor. Well, yesterday my doctor called me and my test results are not so good and he want to proceed with the surgery...... My questions to you all , what should I do ? My husband has same blood type, but we are not a match... I feel so far good , or I make my self think I am feeling good....  should I stay longer and wait for a better match or do it...scare to death... My doctors saying " it up to you , but I don't want you to get sick....."   I will appreciate any advice.

Thank you.



Edited: Fixed subject line error - okarol/admin

[willowtreewren]

Hi, Lyuda,

What is the number match between you and your husband? Even a 1/6 living donor match is better than a 6/6 cadaveric donor match.

I know this is a difficult decision to make, so get as much information as you can.

Aleta

[okarol]

Hi Lyuda,
I am sorry about the matching problem with your hubby as donor. Did they say if it is an antibody problem? Try to get more information if you can. It can help determine your options as far as a transplant.

Surgery - is that for a fistula? They usually do it before you get too sick, giving it time to mature. You can continue to work on getting a transplant even while you have this done.

I know you will get more answers from other patients. Welcome and good luck to you!

[Lyuda]

we are 0/6 match, but same blood type and don't have antibodies. Surgery = transplant

Thank you

[okarol]

Oh I see. I was confiused.
My daughter's donor was a 1/6 match. Right before the surgery they found a mild B cell antibody mismatch, but did plasmapheresis and went on to surgery. She is nearly 3 years post-transplant and is doing great.

[monrein]

I got a kidney from my sister-in-law (0/6 match) in February and so far things are going very very well.  I'd go for it if I were you.  My understanding is that the newer drugs make the numbers far less important than they used to be and only a 6/6 gives any significant edge but still not crucial.  Don't let your body get too run down.

And of course Karol is correct that a living donor kidney is always better.

Best of luck whatever your decision.

[greco02]

What about a Kidney Swap program?   Here is a link to a recent story.   

http://www.nbcnewyork.com/news/local-beat/COUPLE-SWAP-KIDNEYS-72999792.html

My husband and I are having our first consult this next Tuesday.  At our first class we were told about these new swap programs.   I am more than willing to give my kidney to a stranger if Jim is assured that he will get a kidney from someone else...and I am told that is exactly how it is done.   Don't give up hope.  They are doing some wonderful things these days. 

[billybags]

First of all Lyuda welcome to the site you will get lots of info from The family Do not be afraid to ask any thing you want. About the transplant, I went with my husband who is on pd to a seminar, xmas get together last week. The neph did a speech and transplants were brought up. he said "not to quote me" that having a live donor is so much better, even though the match is not too good. With the drugs that are available now, things are so much better. Sad to say my husband is 69 and we have now been told that his age is against him for a transplant.  it is very rare for them to do a transplant over the age of 65, and also you have to be really healthy. Wish you all the best.

[Hanify]

I'd say go for it.  Believe me, they wouldn't be letting you do it if they didn't think it would work!  Wow - what a choice to make though...

[paris]

4 years on the list, I would jump at it!   You can't know if there will ever be a better kidney to come along.  "A bird in hand is better than two in the bush" --- my Mom use to always say that.  Your transplant team wouldn't recommend this if they didn't feel good about it.  Let us know what decision you make.  It is hard, especially when you feel ok. But, you could feel wonderful again!   Good luck        

[Des]

I would say : go for it!

You will go through a rough period but in the long term it seems the right thing to do.

I know because I am in exactly the same boat. I feel relatively good, are pre-dialysis and are having my transplant from a friend next year.

It is the most difficult decision I have to make and I change my mind almost daily..... but so far  my positives outway the negatives.

Good luck.
 

[Wallyz]

Prayers for you and your Husband.  If you can get a transplant before dialysis, you have a better chance of a really positive outcome.  If I were in your position, I would do it now.

[Jie]

I would probably go for it too.  A 0/6 match living donor transplant is better than a 6/6 deceased donor transplant.

Here are the 5-year draft survival rates for HLA matching from OPTN for all transplants:
                     C.I.
0/6  65.6%  64.1-67.2%
1/6  66.7%  65.7-67.8%
2/6  68.2%  67.2-69.2%
3/6  72.2%  71.3-73.0%
4/6  75.0%  73.9-76.0%
5/6  75.0%  73.3-76.8%
6/6  77.2%  76.1-78.2%

So, there is no statistically difference between 0/6 and 1/6. The survival rate is better for matches higher than 1/6. 

The 5-year draft survival rates for living and deceased donors:
                                               C.I.
Living donors:       66.5%      79.1-80.3%
Deceased donors: 79.7%      65.9-67.0%

The difference is 13.2% between living donors and deceased donors, and the difference is 11.6% between 0/6 and 6/6 matches for all donors. I think survival rate difference for matching is higher for deceased donors than for living donors.

Of course, if your waiting time is not too long, it may be a better option to get a deceased donor transplant first and then your HB can be a backup if you need a second transplant.