second donor rejected

[staceyand joe92]

I just found out that my second living donor was rejected for medical reasons.  I have one more living donor to be tested.    I am feeling much better physically since I began dialysis , but emotionally I am exhausted. I feel like I get my hopes up for a living donor transplant just to have them dashed at the last minute.  My brother has signed up for paired donation because he is not my blood type but is a willing donor.  I'm glad I have a place to vent and get good info. Thanks for everyones support.







EDITED:Moved to transplant stories section-kitkatz,Moderator

[RichardMEL]

 

I can relate to how you are feeling. I had my brother rejected due to being a 0 match and then my sister who is a 3/6 match got through 90% of the tests and was, too, denied on medical grounds (her SLIGHTLY raised blood pressure).  Certainly at the time it seemed like the hopes had been getting higher and higher as each test was passed with flying colours and we were getting more and more confident. That was 18 months or so ago.

Now I actually feel, in a way, a sense of relief that she was denied. The most I could ever ask of my siblings is that they came forward and were willing to be tested. They did that (other more distant relatives - like cousins, who may or may not be close enough to match I have no idea have not offered). However as I say I feel some sense of relief. One of my big concerns with the whole idea of a living donation from my sister is a sense of responsibility that I *know* I would have. By this I mean let's say I had gotten a kidney from her. What if something happened during the operation (to her), or even 15 years down the track and it could be traced to being an issue because she had donated?? I would feel responsible and motified about that. Yes, I totally understand that she knew what she was getting into when she agreed to be tested, and she had the psych evaluation and all that - and she was willing to take that risk so why should I feel responsible? My brain understands and accepts all that.. but I *know* that deep down in my heart..... I'd still feel something. So now that it's not happening while there was an initial disappointment I do feel some measure of relief because it seems that particular situation won't arise for me. At least if I am offered a cadaveric donation I won't bear any responsibility for what happened to the donor.

However I absolutely understand your frustration - almost getting so close yet so far. I am sure your donor also feels frustrated and perhaps even rejected - not by you of course - but by the system. The thing to remember is that they do that because they need to consider the health of both donor and recipient.. from my point of view I am glad my sister was denied because they felt there was even a small risk there could be an issue for her down the track by donating.. then I didn't want to accept that donation anyway for fear of what might happen.

I do hope your brother can perhaps donate, or you can be offered a kidney sometime soon!!!!

 

[okarol]

Jenna had 9 people offer but they were either ruled out medically or not a match. The woman who ultimately donated was a stranger. So don't give up hope. You never know where your miracle will come from!

[Lucinda]

I feel a little selfish when I read these posts as I have had many people offer me a kidney and I don't really want one.  I hope you guys who really want one, get one soon.  I had a lunch here on Sunday with a group of people and Cheree and her hubby Russell came along and my best friend was really interested in what was involved when she had her transplant because she is really keen to donate to me and another of my friends was there and she went through some of the testing without even telling me and they told her she was not suitable to donate physcologically.  My step-son's girlfriend also wants to give me a kidney which is so gorgeous considering she is only 21.  I am amazed that I have had so many offers and just hope that you guys get a kidney soon.  You might just be amazed at where the offers come from.  I certainly have been. xxx

[petey]

Marvin has had quite a few living donors tested and then turned down (for various reasons).  Each time one was being tested, we would say, "We're not going to get our hopes up.  We'll just wait and see."  Easier said than done!  Each time, we did get our hopes up.

The hardest "turn down" was my sister.  She went through four months of testing, testing, testing.  She was so sure she was going to be the donor.  Then, at the very last test (it evaluated her projected kidney function in the years to come -- how do they come up with this stuff?), she scored one point under the allowable.  She asked to have the test repeated, but the doctors refused.  When she called to tell Marvin she had been denied, SHE cried and cried.  Marvin was comforting her.  He told her, "I could never forgive myself if something happened to your kidneys 10, 20, or 30 years from now.  It's all for the best."

Still, it's very hard to hear that someone who is willing has been denied.

However, just the offer by itself is a special act.  I have always loved my sister, my brother, my sister-in-law, and the other friends who offered.  But after the offers and the testing, my admiration for them increased one hundredfold.  And, so, we're still waiting on the UNOS list.  Marvin says his time will come when it's supposed to come, and the kidney that comes will be perfect for him.

[RichardMEL]

Petey thank you so much for relating Marvin's thoughts on his sister. This in a way validates exactly what I was saying and feeling and I am glad I am not the only one (of course I mentioned all this during the psych thing and they still seemed to pass me! LOL). I think it is natural to feel that way and well i totally understand how he felt. I know both my siblings were so upset when they were denied to donate and in a way yeah it was me who was consoling them which seems kind of weird given the circumstances!!!

It's funny but it might just happen when you least expect it...... fingers crossed!!!

Oh and Cindy I imagine they wouldn't allow a 21 year old female to donate. During the testing for my sister (who was 38 at the time) they put a LOT of emphasis on child bearing. Now at 38 she was reaching the end of that, but they were still "If you want to have a child we don't want to transplant a kidney from you" - and I bet with the girl at 21 they would simply say no on those grounds. Even if she says she doesn't want children now it's not the point - obviously she has ~20 years to have children and I do not think they would want to harvest a kidney with that in mind. Although that may just be a Vic thing who knows about NSW or elsewhere in the world.....

[staceyand joe92]

Thank you for all of your supportive stories.  Both of my rejected donors were very upset that they were not a match. I felt terrible for them.  From now on I'm going to dialysis without complaining and I'm going to wait for my "perfect " kidney.  I'll get the one that is meant for me too. Thanks again.

[paris]

I think those calls have been so emotionally hard to receive.  Each time you do get your hopes up.  We have had six tested.  The hardest was my daughter, AlohaBeth.  I didn't really want her to donate, but she was sure she was the one.  The transplant co-ordinator was crying with Beth when she said she couldn't donate, after going through most of the testing process.  I spent the next week assuring Beth it was fine and encouraging her to go on with just living.  It is a huge rollercoasters, and I have never liked rollercoasters!    Keep living with hope.  And I'll keep praying you find a good match.   

[kellyt]

StaceyandJoe - to "wait for your perfect kidney" is the absolute right thing to do!  Whether that means keep on testing donors or patiently wait for a cadaverous donor.  It will happen.  I tested two related donors and my husband before they accepted my 4th (sister-in-law).  Both brothers and my husband were matches (good matches), but they were all three ruled out for "medical reasons".  It was very frustrating to say the least, but I knew in my heart that I could not have accepted a kidney from them if they were at risk for possible kidney problems in the future.  Brother #1 had protein in his 24-hr urine (168 mcg and the cut off is 150 mcg), brother #2 had borderline hypertension and high cholesterol, and husband had calcium in his urine that "could" possibly cause kidney stones in the future.  Again, frustrating but understandable.  After they denied my husband I just accepted the fact that I was going to be on dialysis until the "perfect" kidney came along.  My husband's sister offered to test in August, was accepted in late Sept and we transplanted on Nov. 5th.  I feel great!  I'm doing great!  I couldn't have asked for a better outcome.  My donor is doing great, as well!

It will happen as it is supposed to happen.  I'm a firm believer in that, even though I bitch and complain probably more than anyone.  The Lord hasn't let me down yet.  But he sure makes me work for it!   

Good Luck and keep us posted!    We care!   

[kidney4traci]

i too so understand the disappointment when you receive a no.  I had ten people test, and finally my yes!!  I still can't really believe it since it is a month away, a little voice wonders if something will happen.  But you will get your turn!!   Don't give up.  I am glad you are feeling better!

[Romona]

  i hope the right kidney comes soon.

[monrein]

So disappointing.