am so confused - please help.

[lou]

I would really appreciate anyones view on this.

I am 29 and have been on dialysis for 3 months. My Brother and boyfriend have both offered me their kidney but both of them are 1/6 match. I have been told by my doc to wait on the list at least for 6 months before we look at them again. The reason he has given me is that because I am so young I will need another transplant in the future.
He believes I am better waiting on the list and hopfully getting a good match (maybe 5/6 or 6/6). Then in the future I may be able to have my boyfriends kidney. He has explained that if I were to have my boyfriends kidney now and it failed after a couple of years getting a second kidney would be very difficult.

I understand what he is saying but I cant help but question it. I live in the UK and this morning my boyfriend went to hospital to look at going into the pool system (where they try to pair you with another couple to do a live donation). The nurse who saw my boyfriend through he should just give me his kidney now and didn't understand why I was on dialysis.


I am so confused. I know there is no right answer and no one knows how hong any kidney will last.

I guess I am scared that Shawn would give me his kidney and then it wouldn't last long and then I would face years and years on dialysis because I would have built up so many anti bodies.
Shawn keeps telling me he wants to just give me his, so we can get on with our lives. I used to feel a bit strange about him doing it (we have been together 8 years but been having a hard time recently, since I started dialysis) but now I think I would feel ok about him doing it. I love him so much and know I would want to do it for him if it were the other way round.


I just dont know what to do. Everyone has a different opinion but I am scared that this is my life and I don't know what to do.   Please please please can anyone give me some advise. I would really aappreciate anyones views on this.

Thanks for reading this

Lou x x x x

[willowtreewren]

Dear Lou,
This is a very complicated question and one that gets to not only the medical reasons but emotional ones for accepting a kidney that is a 1/6 match.

Having said that, I would advise you to listen to your doctor on this one. In the grand scheme of things, 6 months is not that long.

The other thing that concerns me about your post is that you mentioned that you and your BF are going through a rough patch (due to dialysis). I would be surprised if this were not clouding your judgment, and at the very least, it seems prudent to work on that relationship before forging ahead with the transplant.

If your BF is considering donation just so you all can "get on with it" all the more reason to take a deep breath and slow down.

I really understand about wanting to be able to stop dialysis RIGHT NOW. Believe me, I do. But this is a serious decision and best not made in haste.

Thinking of you.

Aleta

[aharris2]

...I live in the UK and this morning my boyfriend went to hospital to look at going into the pool system (where they try to pair you with another couple to do a live donation). The nurse who saw my boyfriend through he should just give me his kidney now and didn't understand why I was on dialysis...

Lou, I agree about waiting a bit for a better match. However, I think looking for paired donation during that time (and beyond) is an excellent approach. Can or is 5/6, 6/6 matching specified as a criteria for paired donation?

Regarding the nurse... I have met some excellent nurses who are knowledgeable and do a super job, better than some docs. I have met many more who aren't and don't (docs too).

You have IHD here for you. Do the research! I am sure there's a lot written here about poorer matches and their implication for the future.

I wish you a long dialysis free life with a successful transplant that serves you well and long... and the possibility of future transplants should it prove necessary. If that means waiting a bit now, please wait.

IHDers with first transplants that have failed, what info and thoughts can you add? Has there been a correlation between a poorer match and you prospects for the second transplant?

[lou]

Thanks for these thoughts, I guess maybe I should just wait on the list and trust my doctor. I think I just panic a bit when someone medical asks me why I'm not having my boyfriends kidney.

aharris - thats a good idea, I will ask IHDs about what happens after one kidney fails.

Aleta  - Thanks for your honesty about Shawn. I have no doubt our relationship will last but this dialysis has been very hard on him too - I know hes not coping too well with it and is desperate for me to get a transplant so maybe that is making it hard for us to look at it logically. He keeps saying well I could wait years on the list and then that kidney could fail after a week.  I know that could happen too - i just wish there was an easy answer!

[okarol]

My daughter got a 1/6 kidney when she was 21 years old. The doctor said it was a good tissue match, which was more important than the antigen match. Did they discuss that with you? We know the kidney will have to be replaced someday, but it's been 3 years so far and she's doing great. Your doctor may have other reasons for not recommending your boyfriend as a donor, but they are not able to disclose any info to a recipient. They have a responsibility to do whats best for the patient and the donor. You are right, there are no guarantees about how long the kidney can last, there are so many variables after the surgery that can happen and cannot be predicted. It sounds as though your doctor is being very careful.

[calypso]

Do what the doc tellls you and wait. The nurse your BF spoke to does not have enough information about your situation to make such a decision.

[Hanify]

Oh I can understand how had this must be.  I guess my advice would be to go with the doc's advice - he isn't telling you to wait because he gets anything out of it - if you know what I mean, so I think it's genuine advice.  So hard though - especially with all the stuff you read about 1/6 matches working.

[petey]

My husband and I were a 1/6 match, too.  I tried for a little over five years to convince his doctors to let me be his donor (this was back in 1995), and it took them that long because the anti-rejection drugs were not as advanced as they are now.  His doctor kept saying, "It's likely he'll reject your kidney, and we don't want you to give up a kidney that he's likely to reject.  The drugs aren't perfected enough yet to let him keep a low-match."  While I appreciated their concern for my loss ( -- ? if you call it that), I wanted to be Marvin's donor.  His hospital had never done a 1/6 match before.  They said no, no, no, no, no for five years.  Each year, I begged, pleaded, and offered again; the dialysis was taking a huge toll on his body.

After five years (and much advancement in the anti-rejection drugs), his doctor told me when I asked AGAIN, "It would be an experiment.  You realize the chances are good that he will reject.  Do you still want to do it?"  YES  YES  YES !!!  And, we did.

My kidney started working in Marvin's body BEFORE they could finish sewing him up.  There was never, never even the slightest hint of rejection!  We were ecstatic.  Marvin's hospital opened up its standards and started accepting other low-match living donors.  We, as the guinea pigs, made a tremendous difference for other people whom we will never know.  It was a wonderful experience.

Three years later, Marvin's transplanted kidney started showing signs of the same disease (IgA) that had destroyed his original kidneys.  After that, it went downhill quickly -- three months after we got this news, Marvin had to go back on dialysis.  He's been back on it since October of 2003.  The doc said it was a "one in a million chance" that the disease would reappear in the transplant.  We were devastated.  But, even more so, we were so disappointed to learn that because of my kidney, Marvin's antibodies were extremely elevated (98%).  He now needs a donor that has his antibodies and mine, too.  There is a slim, slim chance that we will ever find a donor who meets this criteria.

I don't think that a better match would have kept the IgA from reappearing.  And, rejection is possible -- with any match, even the 6/6 ones.  Any transplant is a risk, for rejection, for disease reoccurrence, for a myriad of things. 

I really have no advice for you.  What we did was right for Marvin, right for me, at the right time, in the right place.  What was right for us may not be right for you and your BF.  But, I wanted to share our experience with you.

P.S. Both Marvin and I agree that if we knew then what we know now (my kidney would only last for three years and three months for him) that we would do it all again -- in a skinny, skinny minute, with no reservations and no hesitations.  It was a very good three years!!!!!!!!!!!!

[Jie]

A 1/6 match living donor is better than a 6/6 deceased donor. I would go for it. I checked my tissue types with all donors of my blood type during the last 10 years in the U.S., there were only 5% of chance of 2/6 and zero chance of 4/6 or higher. So, for both living or deceased donors, I don't expect to get any better match than 1/6.  Fortunately, the medicines make the match not too important any more.

Who knows how long a kidney can last. It could be 1 year, 10 years, or 30 years. Ten years from now, an artificial kidney may work just like a real one. A liver transplant would not be expected to last more than 10 years. However, my former doctor had a liver transplant 20 years ago and now he is still seeing patients from time to time. He outlives a lot of persons at his ages.

Either brother or BF is a good donor. I read a report two years ago that a BF's kidney or HB's, is usually working better than those from a stranger.

[RichardMEL]

I agree with Jie. My doc also told me that the 1/6, 2/6 etc match doesn't matter so much these days with the improvement in the meds and all. Of course if you GET a 6/6 you totally want that, but a 1/6 isn't perhaps the totally negative thing that it perhaps used to be.

I'd go for the brother's kidney first personally. The boyfriend may not be around for the rest of your life, and it's more likely that an organ from a sibling is probably genetically "better" for you than from someone unrelated. Of course that then depends how you feel about taking a kidney from your brother (or boyfriend).

Certainly a live donation is much better than cadaveric. It can be planned and done in a controller manner unlike the other. You have two donors that are a match and both apparently willing - this seems a good situation to me.

I know if it was my neph I'd be transplanted with one of them. I also think waiting six months seems a tad optimistic that a donor organ would come up on the list in that time. I *wish* it was as little as that !!! I could have had 5 kidneys already!!! 

[girliekick]

first of all listen to your gut, and then follow w your heart, but dont go against your head.
I have two 4/6 matches, i didn't like the position that put me in, though it is a blessing, its not something easily foreseen. Im 27, and my bf and i did not survive my first year of D. I wonder how your treatments are going, how your adjusting. I dont know how it works in the UK, but if  your bf wants to do the paired donation, i say go for it. Then he will go through the complete process and find out if he is able to donate. At my tx hospital there is a program where a person  can be an alturistic donor and that will bump there person up on the list.
Id. What i would do. But i know my docs were not concerned with the amount of antibodies i would take on, but i am. I am of the mind set to take am many precautions as i can while remaining somewhat sane.
A day, week, month, or 6... You take as long as you need, i know its hard on others but you will be the one living with your decisions. You can pm me if you wanna talk about it more.
Good luck
girl

[jbeany]

My doctors gave me the same advice your doc gave you.  My sister offered to donate to me.  I told her I wanted to wait on the list for the first time.  I'm young enough and was doing well enough on dialysis that the wait time was unlikely to cause any really bad side effects.  Any transplant will raise antibody levels, so after the first transplant, a living donor is much more likely to last longer for the second.  (Plus, her son is still in elementary school.  I know the risks are low for living donors, but there are still risks.  Better to wait until my nephew is older, just in case.)

So now that I've had my transplant, I just tease her about staying healthy so she's taking good care of my future kidney.

[Maker]

Wow Lou, you are blessed to have Shawn and your brother want to donate 

I can only imagine what a hard decision it must be.  I may be in the same situation...just starting the process now. 

I will say a prayer you will know what the right thing to do is 

[lou]

Saw the doc today and we made a decision that Shawn will hopefully be the donor!

Basically the doc said that the fact I have Shawn who is 31 and seems healthy and willing to donate , we should go for it. I have been so worried about the fact that he is not the best tissue match (1/6) but today they were all saying this is not so important as having a young, healthy kidney. I have been so worried about how hard this might make a second transplant but I guess sometimes you just have to live for now and worry about the future when it comes. My doc was also saying that hopfully this tissue matching wont be so important in the future - I don't know if thats true, but I hope so for all our sakes.

Anyway we are both feeling a bit emotional now we have finally made a decision. I don't want to get my hopes up too much as have already had 5 donors rejected for various reason but just have a good feeling that Shawn will pass all the tests.

Anyway just feeling so incredibly lucky that I have Shawn in my life (without out getting too soppy here!) and fingers crossed the next few months of tests will go ok. He says he feels really ready for it and "bring on that operating table!" so I just hope we can get to that point.

x x x

[Jie]

I think this is a good decision. Your brother can always be a backup when needed.  Best wishes to you.   

[okarol]

  Hope it all works out well!!

[monrein]

All the best Lou.  These decisions are always tough and very emotional.  I can't presume to advise you but I will tell you that my current transplant was a 0/6 match from my brother's wife and so far all is going very well.  My doctor felt that the benefits of a live donor kidney combined with the newer generation of anti-rejection meds outweighed any potential advantages of waiting for a higher matched cadaveric kidney. 

Hope you can be at peace with whatever you decide and that everything works out well.

[Zog]

Hope it works out well.  When is this guy going to marry you?  Not to give him a hard time, but c'mon!  8 years!

Anyway,  we aren't very stressed out over here about getting transplant number 4.  We figure the drugs get better every few years... no rush.

My wife's third 6/6 cadaveric (ATN + rejection killed it) lasted longer (3 years) than her second 3/6 cadaveric (cyclosporine toxicity killed it) or her first 3/6 living (from her mom, a blood clot killed it).  Don't believe statistics.  A lot of how long you keep your transplant comes down to several biological processes you have to monitor and take your meds on time every time.  My wife's Prograf was boosted by her Prilosec (kept her liver from metabolizing the Prograf) and reduced by her periods (which were controlled by birth control pills).  Trying to keep that Prograf and/or Cellcept level up to keep the T-cells confused is a delicate process.

Good luck!

[okarol]

lou got a transplant! Update here -->> http://ihatedialysis.com/forum/index.php?topic=18046.0