Transplant not happening : Can anyone shed... - Kidney Disease

Kidney Disease

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Transplant not happening

Bunkin profile image
25 Replies

Can anyone shed light on why someone would offer you a kidney out of the blue, travel from another state, complete all the testing, be a perfect match, now all of a sudden won’t return my calls or messages? How could someone offer you life, then pull the rug out from under you without any explanation? What kind of person does that😥

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Bunkin profile image
Bunkin
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25 Replies
Jameskbt profile image
Jameskbt

Do you mean this has happened to yourself?. If so I am truly sorry, a very cruel thing to do if they have just ignored you without any form of explanation. Even if they had changed their mind you deserved to be respected by being told face to face or at the very least over the phone if distance is a factor.

Bunkin profile image
Bunkin in reply toJameskbt

That was my feeling as well😥 Thanks for understanding

Stephene10 profile image
Stephene10

You shouldn't have let her go .Even I have been looking for an opportunity to donate kidney but I wouldn't travel back till all is done.

Herkidney profile image
Herkidney

I know from experience how difficult it is to wait for someone to step up and to go through the donor evaluation process. It is even more difficult if that person is approved to be a living donor and then changes their mind. However, please remember that anyone who is willing to donate a kidney has an absolute right to change their mind. I went through the same process and was disappointed just like you. However, I was fortunate enough to have another person give me the gift of life. Please remember that the decision to donate a kidney is a very personal decision. Once a person donates a kidney, there is no guarantee that they will be able to obtain health insurance which is a very important matter. Also, there could be life factors and other things but this person may not have shared with you Which influenced their decision to not donate a kidney. Maybe the reason that they are not in contact with you is because they are embarrassed about their actions. Hopefully you will find another match and you will get your kidney transplant. Please do not give up hope!

Bunkin profile image
Bunkin in reply toHerkidney

It isn’t about changing her mind, it’s about leaving me hanging with no explanation. And in my way of thinking there’s no excuse for that.

Jameskbt profile image
Jameskbt in reply toHerkidney

I agree with what you say but at the VERY least that person should put embarrassment aside, act like an adult and have that very difficult but necessary talk or phonecall. Hell even an email or text would have been a step up from what Bunkin experienced you know?.

Peri5 profile image
Peri5

Sorry to hear this has happened..must be hard to get your mind geared up for transplant and then not get a response after all that testing and efforts.

It could be due to some personal circumstances but you certainly need to be informed as this effects your life..Is there any mutual contact who could ask for you on your behalf..?

Hang on in there and dont give up..I'm.sure you'll get another match..stay strong..

Bunkin profile image
Bunkin in reply toPeri5

There is but I hesitate to involve her.

neenors profile image
neenors

So sorry to hear. I have no answers except that people do foolish things. Hang on, maybe another saint will turn up for you. Hope so.

Bunkin profile image
Bunkin in reply toneenors

It’s just so frustrating but I will make it through

itzmich profile image
itzmich

I can't imagine how you must be feeling, my heart hurts for you. It is my prayer that someone else will step up and be your donor. Try to let go of figuring out why, it will just frustrate you. Stay positive and keep hope alive.

Bunkin profile image
Bunkin in reply toitzmich

Thank you😀

Kakieface profile image
Kakieface

I’m so sorry :(

Bunkin profile image
Bunkin in reply toKakieface

Thanks

WYOAnne profile image
WYOAnneNKF Ambassador

Who knows why someone would go through all of the testing, etc. to be you donor and then disappear. Many have given you good advice. Maybe they were getting some negativity from their family, their work.... Or maybe they got SCARED!

Who knows, maybe they will be able to work it out in their own head and be your donor!

Bunkin profile image
Bunkin in reply toWYOAnne

😀

Clarrisa profile image
Clarrisa

My companion’s grandson was diagnosed with having been born with one kidney. He was told he could no longer play any contact sports. If potential donors are given life long activity restrictions such as this they may decide against donating.

It would be nicer if the proper Transplant Services had some standard form (check boxes) for a donor of a larger donation such as this to easily complete if they backed out. This way the service may capture more reasons to share with recipients. I am sure a grieving process occurs at your end. I wish you luck securing a future donor.

Bunkin profile image
Bunkin in reply toClarrisa

It isn’t just the backing out, it’s not knowing one way or the other. The hospital tells you nothing so you just sit waiting

CatOnACloud profile image
CatOnACloud

As weird as it sounds to those who process things more normally, there are some who completely shutdown when they are upset. I do think embarrassment must play a role here in not contacting you. I only mention this because I've seen it happen in my family a few times, and it left me completely flabbergasted. Some people shutdown and can't talk or otherwise handle their business. I hope the next kidney around the corner is going to be even better for you :-) It's ok to be upset... who wouldn't be!

(When i had my diseased kidney removed at age 17 in 1989, I was never told nor did I know I wouldn't be able to get healthcare, that I was considered CKD then, etc. So 30 years ago it certainly wasn't protocol where I was to mention it. They made a humongous show of pretending everything would be as good as the next person with two good kidneys. Interesting for comparative purposes. I was able to get insured through municipalities, but later in life was denied. Repeatedly. Obamacare saved me there.)

Lupiegrl profile image
Lupiegrl in reply toCatOnACloud

I never knew that if you donated an organ you would ever be now to get health insurance. That’s a disgrace and a slap in the face to the person who is giving one of the greatest gifts a person could give. They should get free healthcare for the rest of their lives at least through the government. I mean do they hand you a sucker as they wheel you out when you go home and tell you to have a nice day? That just caused my whole body to shake. Hey don’t know how many arguments I’ve gotten into with people who say they wouldn’t donate anything if they died. Like they were going to need anything anyway. I know everyone has a right to do what they want with their own bodies.. blah blah blah. But if it were up to me it wouldn’t even be a choice. That may sound messed up to some but if they or someone they cared about needed an organ they wouldn’t hesitate to get one from someone if they could. Maybe they should start checking to see if people are organ donors before they give them one. And I thank god for Obama care. I don’t care what people say about him. Or Obama Care, they are usually the ones who can afford health insurance. I didn’t have it for over 10 years. I’m so grateful for it because after kidney stones and surgeries and being diagnosed with Lupus along with a several other autoimmune diseases along with so many spinal problems, I would probably be dead because I couldn’t get the healthcare I needed. And still need.

Bunkin profile image
Bunkin

Thank you for your input😀

Jayhawker profile image
Jayhawker in reply toBunkin

Bunkin, I’m a firm believer that things work out the way their supposed to... It can still be stressful for me to deal with unexpected bumps in the road as they come along. But then, years later, as I reflect back on the situation, I realize that the bump in the road ultimately worked out in my best interest.

But What an emotional roller coaster this transplant situation is! This will likely stretch my own coping skills to the outer limits. I’ve already started telling my friends that they can help me wait this out by helping me stay busy doing things that are either really enjoyable at work or fun to do outside of work. I’m thrilled to still be working. That does really help.

I agree with others; it’s time to try to put this behind you and KNOW that that kidney wasn’t the right kidney for you. The right kidney will arrive.

I’ve been listening to various video songs on YouTube when I exercise that seem to help me keep my spirits up. One that I’ve really listened to a lot lately is by The Piano Guys. The song is called, “Its gonna be okay.” I’d link it into this post but it won’t open here. But I’ll at least post the URL for the song. You can copy and paste it into your internet browser:

youtu.be/5pBjopDymts

Jayhawker

Bunkin profile image
Bunkin in reply toJayhawker

Thanks for the encouragement and the song. Music does help me😀

AnneEG profile image
AnneEG

Will you be put on dialysis instead?

Bunkin profile image
Bunkin in reply toAnneEG

Yes I go to doctor next week and I’m sure he will say so

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