hello all, I’ve been on here and there in the past year panicking but I’m finally accepting I’m at the point where it’s more than likely the end of my 33yr old kidney. First, I am in therapy and take anti-anxiety/depression meds so my mental health has always been a work in progress. We’re in the process of getting my husband tested for me but throughout my decline I can’t help but be disappointed in my sister. We’re 2 years apart and I know she’d more than likely be a match based on blood type and well, we’re related. My first kidney was from my mom and it was an excellent match. I know my sister has her own life and family and it’s an incredibly huge ask but the fact that she hasn’t even offered (while my sister in law and others have!) kind of stings. Have any of you gone through something similar and how do you handle your feelings around it all? I don’t want to hold this against her but I can’t let it go. I don’t feel comfortable outright asking - I think the lack of offering is my answer. Just hoping with everything I’ve got that my husband is a match so I don’t have to deal.
navigating possible donors: hello all, I... - Kidney Transplant
navigating possible donors
Hi. I’m still looking for a living donor. I have experienced the same thing with close relatives. It can be confusing as to why they won’t apply/test to be my donor but over time I have accepted that it just is not right for them. Although they we are related I do believe they each may have things going on in their lives that I am not aware of that may not make it possible right now for them to step forward and be tested. Organ donation is a big commitment and many just can’t add one more thing to an overflowing plate/life. However, I have found that each one has been willing to help me share my need by posting my story on their social media sites and sharing with co-workers and social organizations they belong to. I remain hopeful I will find my donor and when that time comes I know all my family will be cheering me on to a renewed life.
Hi,
I have 8 sisters and 2 brothers , and only 4 came forward. Some the excuses were funny . I didn’t expect any of them to come forward but it took a few years before they did. I was 8 years on dialysis. So my sister gave me her kidney but during surgery there were lots of complications and it was removed after 3 days. I don’t I’l get any of them to offer after that. Fortunately I received a deceased donor in 2020 and it’s going well. I feel unless they’ve been true it they don’t understand the daily struggle . For years I felt like if I wasn’t in a hospital bed then I wasn’t sick in their eyes. I try not to hold it against them but yes it does hurt . I hope it works out for you.
Good luck
I have 6 sisters and not one offered yet we have all been really close yet a couple my husband knew wellll that I barely did offered.Did it hurt? Absolutely but I got over it as had enough on my plate and wasting energy and stressing out about it would just be cutting off my nose to spite my face.
My three siblings did not attempt to donate for either me or my younger brother. Definitely hurts and hard to comprehend. But even harder for me to comprehend was the generosity of all those that did step up. Maybe it is just my personality, but I am much more impacted by their generosity than by those that did not try.
Fortunately my wife was able to donate, and with a paired exchange was able to get me a great kidney.
Maybe you should come right out and ask her.
In my case, when I told my brother ( who had known for sometime that I needed a kidney) that my cousin had said he would give me a kidney, my brother said ” I’ll give you one. you never asked”.
I too found it very hard to ask. It’s better if you get someone to ask for you. They will have absolutely no trouble in asking.
I have three siblings and we have always been very close. I didn't ask them and none of them offered to donate. It hurt my feelings, but I understand it's a big ask. I can't hold it against them because if the tables were turned, I'm not sure I could do it. As it turned out, I unexpectedly got an altruistic donor. It takes an incredibly generous and special person to donate a kidney, especially to a stranger, and I am very grateful to him. You never know what may be around the corner. I know it hurts, but as someone said, you may not know what's going on in their lives that you are not aware of. Also they may be afraid to donate for fear of something happening to them after giving away a kidney. I hope you can work through your feelings and not hold it against them. Sorry, I don't have any good advice for a way of doing that.
This is a very interesting and a very real situation for those facing kidney issues. My husband (now transplanted) and I experienced our kids also not stepping up. I just now asked my husband felt about this and he said this, "There is no obligation on the part of any relative to do this and or that a potential donor will even qualify or will want to go through the hoops required. It's a huge ask, especially when you know that living with only one kidney is also a risk. Go into it with the expectation that the chance is very, very low and you won't go through a severe letdown."
In our case, we understood that our adult kids have their own priorities. Two of them are parents - who knows what needs they or their children may have down the road. Another one is struggling with psoriatic arthritis, and probably wouldn't have qualified. I offered but was immediately rejected due to age. However, we're glad we recognized the situation quickly and pivoted to finding a deceased donor kidney, noting we were willing to consider less-than-perfect ones. We also wasted no time in finding and researching higher volume transplant centers and double-listing. See srtr.org/transplant-centers... I'd also like to add that there was a post some time ago with two or three individuals mentioning how they wished they had not received a living donor kidney from family members. It was sobering and eye-opening - not all family members behave nicely afterwards. Perhaps you can do a search and find that discussion. (I, personally, think not enough vetting is done by the centers in that regard.) So everything has positives and negatives. In summary, it's very important to remember that when one door closes, another one opens. We have seen that happen. With perseverance, you will receive that gift too.
I don't think my brother is in good enough health to donate so I did not even think of asking him. But my husband said he would (he is 7 yrs older 75) but doctors said they doubted it would be good for him. My two sons are all I have and their spouses. I asked both sons and one said yes. When he and his wife were having doubts, I asked the younger son if he would consider and he said no, he just could not handle it. I understand, he has very high anxiety and the surgery would send him over the top with fear. My oldest son can't understand that, and thankfully he is going forward and we pray nothing at the last minute arises to knock him out of donating. Some people just don't have the mental strength, even though they may hide it well from others. Please try to forgive and not judge your siblings. But I agree with one respondent, you won't know for sure until you ask and give them the opportunity to say yes or no and why or why not. Please ask.
I think this is a hard one for many people. My sister same blood type quit the evaluation process halfway through because her doctor did not recommend she donate. Yes she had a urinary issue she never told me about until right when it was time to start testing. I wish she had finished the evaluation and heard the transplant doctors’ opinions. It’s been two years and a tiny part of me has not forgiven her. I don’t think I ever will.
I was shocked none of my cousins or in laws volunteered.
I told myself, Do not ask your brothers they know you need a kidney they would have offered! Finally I broke down and asked them. No.
One cousin told me he thought about it but it would take too much time. What about years of me suffering on dialysis?
One cousin wrote me a letter “I’m thinking about a paired donation” then nothing.
I almost disowned my entire family. I struggled with it.
However resenting someone is like swallowing poison and waiting for the other person to die.
If I hadn’t gotten a deceased donor kidney by now I think my heart would be full of hate and anger.
Fortunately some amazing person checked the donor box on their license (or family said so ) and my life was changed forever.
All I can say is, love doesn’t mean the same thing to everyone .
Plus, really , no one “owes” you a kidney. It is major surgery.
Three people (a distant cousin, a niece, and a guy I barely knew) offered to donate a kidney to me. However, before any of them could start the process of donating, I was offered a deceased donor transplant. I jumped at the chance to start feeling better and living more normally. I realize that life expectancy is usually longer with a living donor, but I was in end-stage kidney failure and couldn’t wait to see if any of my potential donors were compatible.
Yes - not one of my blood relatives offered (to be fair my kidney disease is genetic on my Dad's side so that side gets a pass 😊). But the pain of no offers from people who could help you but choose not to (whatever the reason) combined with the stress, anxiety, physical symptoms of disease, fear for the future is just awful. I hear you and remember those feelings all too well. I had to keep telling myself "no one owes you a kidney" and trying to remember that people's interior thoughts and feelings are entirely their own but still it's an emotional slog and I'm so sorry you're going through it.
Sharing this flyer for those that may be interested in attending. Invite your family and friends to attend as well to learn more. We often fear what we don't understand. Even if they cannot or will not donate, there are still ways that they can support us in this journey.
I RECEIVED THE GIFT
First Time Kindey Transplant 
Matches
Overwhelmed 
Embarrasing skin
