I know I’m not the only one waiting on the gift of life - I’m not special and many people have to get listed and wait for a living donation and live this hard reality. I’ve been so hopeful as my husband has been adamant about donating and he was our Plan A and B (direct or exchange). We are the same blood type. But despite pouring over all the resources about living donation, his circumstances didn’t come up. He is not overweight, he has no comorbidities, we’re in our late 30s and overall healthy. So it came as a big blow that they didn’t even bother to do any testing and immediately disqualified him over clots (they were situational, not out of the blue). He’s trying to talk to a doctor directly (he’s only spoke to the living donor coordinator or whomever it is) and they are refusing to let him essentially provide further details and plead his case to the Dr. Has anyone run into anything similar? I’m just trying to deal and readjust my expectations that I might not avoid dialysis after all and not having someone lined up is very scary.
Does going social actually work to try and find a kidney donor?
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My friend had it happen to her. She is healthy as any one I know. She wanted to donate and they ran her through testing and they came back with no.....and just said her kidney was not perfect. That was it. I would have fought.
Hi. I have had a couple of people denied for what seems unreasonable reasons. One had a pre cancerous mole removed 20 years ago and has had no problems since and another for a BP just barely over their allowable limit. They both tried to appeal but came up empty. The only response from my transplant hospital was to try another transplant center as some have more lax standards! This is not an option for me as my post transplant support team don’t have the flexibility to travel like I can. Very frustrating.i keep spreading the word publicly but so far no luck finding a match.
I'm sorry; that is indeed devastating news. Each center determines its own standards so you might try calling some other centers. I do know there are donors who were denied but accepted elsewhere (sometimes at larger centers with more experience that would take more risks). Good luck.
From my experience, the same clinic will not reconsider. While it’s devastating to the patient, the doctors are only working in your best interest. Their job is to ensure you have a successful outcome. I wish you luck in your search for a donor or, in the alternative, that the right kidney comes to you from the list.
At least your husband was willing. Mine couldn’t be bothered and never even considered donating to me even though we have compatible blood types.
Sorry to hear about your problem. It really comes down to outcome statistics. Which is also why many older people have trouble getting transplants at certain centers. Our medical industry is based on profit. If you have a center that does not have a good outcome Stat then financial donors and insurance companies will not want to support that center which usually affects the hospitals budget and thus it's profit. Any liability is considered a con no matter how minor. I was one of those older adults who was passed over for 5 years for a transplant but as soon as I went public I received a transplant. It was not a hostile public report but I finally stopped hiding my dialysis from my work and friends. Which is somewhat easy when you are on pd. My daughter spoke to a local TV reporter on the trials of dialysis and kidney disease. I landed on the local news and some time later i got a call in the middle of the night for a kidney. Would it have happened anyway? Will never know. But my suggestion is do not give up hope and keep pushing forward. The system may not be working for you now but keep in mind some small change in the process can open up an opportunity. Look for that opportunity.
Sometimes it's good to sit back and reflect a little. Clotting and bleeding complications can be a significant concern during and after kidney donation, not only for the donor but also the recipient - impacting graft function and overall outcomes. It's great that this transplant center noticed it - for everyone's sake. That's the beauty of undergoing a very comprehensive health review. However, another transplant center may be able to have ways/means to deal with this situation so that your husband remains well and that the gift inside you stays well too. However, if it turns out this option truly isn't viable, keep the faith and pivot quickly - deceased donor kidneys are also available. While the lists can be very long at some centers, they can be far shorter at others. Please use this website to check the outcomes of centers across the nation: srtr.org/transplant-centers... My husband cross-listed at another center when we discovered the differences in wait times between our initial center and the other and received a deceased donor kidney at the busier center. (I know at least one other person on HU that received a deceased donor kidney in a pre-emptive transplant.) This said, some are able to find a living donors as well. So, why not pursue all avenues? Where there's a will, there's a way. Sending encouragement your way.
The docs want to be as sure as possible that the donor will thrive after the donation. they want two healthy people at the end of the day. So the potential donors get more scrutiny than the kidney patient. Good luck
I am so sorry this happen, I am familiar with the feeling of frustration, but things happen for a reason, even if you don'tunderstand it now. It will all come to your level of kidney function. My doctor told me I could wait till my GFR was single digit to get transplanted. I was told I needed a transplant in June 2018. I found a donor at the end of 2019. I was going to get transplanted in April 2020, but Covid hit. I stayed at around 13 through Covid. I got transplanted on March 6, 2023.
I know you'll find a path to transplantation. Stay on the list and manage your kidney function with hydration, diet and medicine while you start looking for a donor. Keep positive. Follow the National Kidney Foundatuon guidelines to find a living donor. Prepare and tell your story.
Here is the article that got me a donor. spotonmississippi.com/pine-... for my posts to read about my journey, and read others' stories for inspirstion and guidance. You will find a way. Your nephrologist may be able to tell your husband why he was rejected.
My husband went through test for kidney donation. He too was rejected due to clotting issues. I was the opposite of you...I was relieved.I worry about everything and I was worried his health might decline sometime in the future or something might happen to him during the operation.These are the very same reasons I refused to let my sister get tested.
I am on dialysis and transplant list (UK).. its a rollercoaster of a journey. Sometimes you don't want to get out of bed in the mornings, due to your circumstances and other days, you just take everything in your stride.
I really hope you get a donor soon. Even though you are waiting for a kidney, it always makes me happy to read of someone who got their transplant and is doing well. Take Care xx
Ho, I was on dialysis for 4 years then recieved a kidney from my sister , she had lied and told the doctors she had stopped smoking and drinking. Anyway during the surgery and clot formed in the donated kidney and I was very sick . They removed the kidney 3 days later. I went back on dialysis for another 4 years until I recieved a diseased donor and 5 years later the kidney is doing great. The surgeon had told me surgically it was better for me to wait for a deceased donor for a number of reasons and I’m so glad I listened to him.
Appreciate hearing about your experience. Clotting problems are serious and even deadly in some instances. Very happy you managed to get through it all and receive another and better kidney.
I am terribly sorry to hear this. I expected my sister to donate, same blood type, but she unexpectedly quit the testing because she was afraid it might harm her, due to a medical condition she had never revealed to me until she started testing. I too had been counting on her to avoid dialysis.
The Mayo Clinic in Phoenix, AZ has a very short waiting list. They do the most kidney transplants of any center, over 500 last year. I know someone transplanted there after 7 months on the list. I was transplanted there after 11 months and 3 weeks.
They are more aggressive and take on higher risk cases. and you might consider having him evaluated there once you are listed.. However, blood clots are serious. You may think it was “situational”, but the doctors know more than we do. Perhaps you could speak to his regular physician about the clots.
No one wants dialysis, but it is life support just like a kidney transplant. A transplant is not a cure.
Good suggestion for the husband to consult a doctor about his blood clotting issues. I know a young person with an inherited clotting disorder, but a specific med keeps her from safe from a surprise death.
Not sure if this was directed at me or the above. Yes, he tested negative for inherited blood/clotting disorders and he is going n back to the specialist to evaluate what his actual risk would be .
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Creatinine Increase 
25 YEARS & COUNTING
5 years post-transplant and medication
