Mayo Clinic Connect
Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I’m struggling with weather dialysis is better or a transplant. I know any surgey has risks.
Liked by IWantToBelieve, fauneconner, @tbirdmunchkin
@chill28, I read in a recent post that you are waiting for a kidney transplant, I would like to extend a sincere welcome to Mayo Clinic Connect. I would also like to invite you to join this discussion where you can read about and meet other patients who are sharing about their experiences related to waiting for their transplant. We welcome your questions, and we look forward to sharing and supporting you on your journey.
I want to introduce you to @dshaver , @gaybinator , @mlmcg . These members each have shared kidney information from a variety of experiences.
@chill28, Are you currently on the waiting list? Are you undergoing dialysis? What are some ways that we can offer to support you.
@dshaver, I am dropping in to say hi. I hope that you are feeling okay. I know how slow time goes when waiting for a transplant. I did not have the option to get a living donor due to the urgency of my situation. I pray that you will get the transplant when the time is right for your needs. Take care of yourself, and be assured that you are not alone.
We are here anytime if you need us. And we are here if you just want to chat.
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@dshaver, Denise, I'm just dropping in to say "Hi". I'n thinking about you.
Husband needs a kidney transplant. He is 63. Our search for donors has hit a brick wall. He is 0 negative blood type. His siblings are “ too old” and are on medications that eliminate them for donors. Please please help us find a donor
Liked by Rosemary, Volunteer Mentor
Welcome to Mayo Clinic Connect.
You may notice that I moved your discussion and combined it with this existing discussion on kidney transplant. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you and your husband are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I'm confident that our Mentor @rosemarya will be able to guide you in the best way possible – she is the recipient of a simultaneous liver/kidney transplant in 2009. I would sincerely encourage you to visit the Transplant group on Connect, https://connect.mayoclinic.org/group/transplants/, and feel free to post your message and join in any of the discussions in that group, as well
I’m also tagging @contentandwell @IWantToBelieve @cmael @dshaver @2011panc @sevkira @mlmcg @coastalgirl @ters1993 @scottb32 @wmoser2613 @hardaway3 @katieslost @karis @jtannen1 @ginal @mlmcg so that they may be able to share their insights, experiences and strength with you and your husband.
Waiting for a kidney is not fun. I had my transplant 10 years ago. My doctor had me go through the evaluation for the transplant over 6 months before I started dialysis, to give me a head start, that was in 2003.
You did not say if your husband is on dialysis or not, or if he has been through the evaluation to be placed on the transplant list. I did not find dialysis that bad, I know some people do not like it. (There are many different kinds.) If your husband is in good health he should find dialysis time consuming, but worth it. If your husband is not in good health, he may have to improve his health issues before he is considered for a transplant. The surgery is hard on the body, especially if you are over 60, it took me over 2 months after my surgery before I could take care of myself so I could go home.
Blood type is not the only thing that makes a donor a match, there are markers that are checked to see if your body will accept the transplant. The more markers that are the same the less drugs you have to take, for life.
You did not say anything about your insurance, transplants are not cheap. After what Medicare and my insurance paid I had to pay over $10,000 just the first year. I had to have blood work weekly the first month after I got out of the hospital, then every other week, followed by once a month up until last year. Now I go every 6 weeks. The meds have changed over time, slowly being decreased, there again they are not cheap. Your husband maybe put on a diet that is new to him, just like taking the meds when they are to be taken he may have to change his food intake. I am on a low sodium, low sugar, and low fat diet.
One last thing, I found out that beef kill kidneys. I eliminated beef from my diet before I started dialysis and was able to delay my dialysis start time by 2 years, my doctor never had anyone diagnosed with end stage renal failure stay off dialysis for 3 years before. Good luck.
Liked by Rosemary, Volunteer Mentor, jodeej
@janmitchell2003, Good Morning and Welcome to Connect. Here you will read about and meet many others with similar experiences. We all have unique health histories, and unique needs and outcomes. You might already be aware that the path to transplantation is equally unique. We are here to share our own experiences and to lend hope and to share ideas to help and to encourage each other.
I am a liver/kidney recipient. My organs are from an anonymous deceased donor. I was 60 when I transplanted. We have members who have shared about living kidney donation. Here are some discussion that I think will be of interest to you. I invite you to read, or comment, or ask a question in any of our conversations.
– Living Donor – https://connect.mayoclinic.org/discussion/living-donor/
– The Journey from the Donor's Side – I recommend it as a source for hope and inspiration.
– Recipient Toolkit on the Transplant Pages is an excellent resource that can provide you with some additional information.
@janmitchell2003 In January, I donated a kidney to a 61 year old woman that I learned about through her daughter on Twitter. I am 52. We had the same blood type but none of the other markers matched. There was testing done to see if there was anything that would make her body reject my kidney and found none, so we were able to proceed.
If I didn't match at all but still wanted to donate, I could have opted for a paired donation. That means she would have still been my "recipient" but in name only. I would have donated to someone else in the paired system and she would have received a kidney from someone else who was able to donate but did not match their intended recipient. If you find a donor through social media, church, a neighbor, the grocery store etc, they don't have to match at all. They just have to be willing to donate. through the paired program. Your husband would be guaranteed a kidney from someone in the system as long as the person you found continued with their donation.
That was hard for me to explain in writing, if someone can explain it better, feel free!
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