When I began telling people of my renal function and need for transplant, one friend insisted she was going to help me find a donor. She said she didn't want me doing anything, that she'd take care of everything. I had a strange feeling, and continued my search and social media campaign. That was 2 months ago, and nothing. No help or contact from her.
Three sites wanted to run my story ("this week!") and I sent info right away. Well, here I am a month later, and nothing.
I'm getting frustrated at all the promised help falling through.
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JenN18
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So sorry to hear about what you are going through right now. Remember you are the one in need of a kidney not them. Look after no 1 and don't live anything to chance. Your friend may have a valid reason for not getting in touch, may be she is busy or not well herself. What i am trying to say is that if you can do it yourself do it darling.
I created a Facebook page,web page, twitter campaign and was beginning to have yard signs and t shirts made for a fundraiser when a donor was found.
Do not think you can rely on anyone. That is a cold hard truth. I lost friends, and family members while going through this. Too much for them perhaps? I understand that this is a lot to deal with. We get just as tired of our life being all about our health - not dying was kind of important to me - but some folks will never understand. Whatever their reasons for walking away, not getting tested, not contacting me any longer - the way I see it, they were not meant to be a part of my life any longer, or they would be still.
Focus on you. Get what you need and move on from those that can not or will not provide the support that is needed.
Donaldson0007, I do not at this time need a transplant. I'm CKD4 with one kidney due to removal of the other because of cancer. But, WOW. It sounds like you did a fantastic job. How creative! I am going to keep you message in my 3-ring kidney binder, so that should I lose my other kidney (and begin dialysis), I'll have a game plan similar to yours.
Dixidude your story is similar to mine. Lost a kidney to cancer found during a routine exam for something else. Had it removed, no chemo, no radiation. Rocked along for 15 yrs until my renal levels declined then I had to start dialysis but only for 8 months and then transplanted.
Did your drs ever give you a "name" for the reason your remaining kidney went into decline? I was never given a diagnosis and just wondering.
Good for you being proactive in case you need a transplant. If you can & when your labs are at the accepted level that the dr or transplant center says you can be listed, start looking for a donor and try and avoid dialysis. I had several living donors but no match so had to go on D and received my kidney from a complete stranger.
Mary, I had bladder cancer. It was removed at M D Anderson Cancer Center in 2015. Cancer was detected in my bladder only, and it was surgically removed. But 1 year later, MDA discovered I had cancer directly related to the BC in my right ureter and kidney. They were removed in 2016. I am now CKD4 with an eGFR of 27-29. Prior to surgery, I sought a second opinion from urologists at Johns Hopkins, and learned that I was in a group of 5-8% of BC patients with non-invasive cancer (cancer cells covering the inside of the bladder only) who then develop an almost identical kidney cancer called TCC (Transitional Cell Carcinoma). There is no treatment for TCC other than surgical removal. Prior to the kidney surgery, my eGFR was about double what it is now. I'll be 78 in Oct., and I was told that we all will see kidney function loss as we age. I exercise daily at the YMCA, and follow a renal diet.
Interesting. I am sorry as it seems you have had to endure a lot but love your can-do attitude. I was in research medicine for over 30 yrs so I find things like this as a learning method for me. Keep up the good work and keep healthy.
I love your attitude. While I do talk about the health stuff now and then (like when asked for updates) I don't like to hear myself talk about it ALL THE TIME. Not dying is important to me but so is living. I want to maintain a good quality of life no matter what level of activity I can sustain. That throws some folks.
I've got a Facebook and Instagram campaign. I'm thinking about adding a website/wordpress blog.
My husband has been a huge support (he started the Facebook page), but I'm finding my health situation makes a lot of people uncomfortable. They just don't know what to say or how to act around me, so they just avoid. I don't talk about it all the time, I'm still working and actively volunteering in my community...I'm determined to live my best life DESPITE my illness.
Sorry to learn of these disappointments. Believe it or not, your story of someone wanting to help and disappearing is not an uncommon one. Keep sharing your story and never stop believing your ideal donor is out there. Stay the course and expand your outreach. As a mentor who specializes in finding donors, I published a book that includes several outreach ideas, template letters and communication strategies. You might want to to take a look at it: Learn more here: findingkidneydonors.com
I look forward to seeing another post from you with more positive news.
I agree! It's a matter of timing to find the donor. I hear these inspirational stories of people finding donors and look forward to it. It's hard to see the one you love on dialysis and in pain. I so admire my boyfriends can do attitude and still holding down a job plus all of his hobbies. But I'm not going to lie, their are times he feels defeated and feels like ending it all. That's what this disease can do to people. I can imagine faith and God are important.
Your story sounded a little familiar to me. Friends don't really realize what you are going through. When I was waiting for a transplant....friends and relatives didn't think that my health was that bad. Part of it is what they hear on the news, tv & movies. If you are not waiting for a heart....you can live on dialysis$#&!. I actually had someone tell me that. Do what you need to do for YOU! Don't wait for friends. I didn't and got a cadaver kidney. Next month it will be 18 years for me. ....my MIRACLE!!!!! Good luck to you! you will be in my prayers!
Ya, sometimes you get so sick of all of the Medical "stuff." When people would ask how I was doing? I always said I was doing OK. I just couldn't get into it all. Sometimes it helped me to think it all was happening to someone else. I had strep throat at 9 years old. Had nephritis about 3 months later. And about 33 years later was in kidney failure
What I hate now(18 years post miracle), is STILL all of the medical 'stuff." If people really want to know how I am doing, I sound like a hypochondriac. I just keep it to myself. People don't really understand.
My "native" kidneys don't work at all anymore and are the size of golf balls. Really kind to neat to see on a CT scan. My transplant is having some issues now. I am 67, so doctors hope we can get me into "old age" without any real serious issues
Shaylou, I did (almost 15 years ago) multi-list at various transplant centers, but just after I received a kidney, I thought this process was no longer being allowed by UNOS. Hope you are right that it is still a possibility.
I started listing at various transplant centers in September 2013. As of July, 2016, the month that I received my transplant, I was listed at seven different centers.
Hi - I would like to do the same can you provide some advise on how to list with different centers. Is this something my insurance company will pay for?
Keep your chin up and don't rely on anyone but yourself. You will be doing that the rest of your life, watching you counts and numbers, it's your responsibility and you'll eventually get used to and like it as you always know where you are. As for getting a kidney it's really hard to tell your friends, but keep trying God works in mysterious ways. Use word of mouth, tell people at work, at church, at the grocery store, any place you can. You will be amazed where the donor pops up from.
I'm sorry to hear what you are going through. I know how tough it is not having your friends be there for you to be a support system. I myself have renal failure and after my friends found out, I haven't heard from anyone to check up and see how I'm doing. Especially my best friend, she is the one person I NEVER hear from. I have friends I hear from every now & then but the only support system I have right now is my family. Don't feel hurt if your friends don't call you to hang out or text you to see how you're doing because you know the saying "We don't lose friends, we just learn who our real friends are." Stay strong & get better for yourself. That's the only person you need to worry about!
Thanks. I know some of them just don't know what to say, and are afraid of saying the wrong thing, but wow. I'm really learning who is true and who is fair weather. Surprising, isn't it?
Hi I’m Dave I had a deceased donor was on dialyses for 7 years I found a lot of people had the wright intentions but few actually did anything A friend of mine said one time I know what you’re going through and I replied you haven’t a fucking clue what I’m going through excuse the language so my advice to u is don’t depend on anyone but yourself I did it all alone with a few friends who were supportive
When I first started my search for a donor I was quite depressed and was uncertain how to ask people for a kidney. What may take the pressure off of you r friends is to enlist their help to advocate for you by asking them to spread the word, on our behalf, especially through their social networks. You will probably still be disappointed by many of them though. The subject is awkward for many people. They want to help but are not ready to donate. If you have few expectations you will be less disappointed. It is most likely the help you need will come from a most unexpected place. Good luck and know people are willing to donate and have their own reasons for doing so.
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but so is living. I want to maintain a good quality of life no matter what level of activity I can sustain. That throws some folks.
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