Looking for what to expect as I consider Kidney Transplant

Hi @beach757,

Are any of these the discussion you are looking for?

– Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

– Transplant https://connect.mayoclinic.org/page/transplant/tab/newsfeed/

– What to Expect: Post Transplant Care https://connect.mayoclinic.org/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/

Hi Rosemary,
It has been a ruff month. My Kidney percent is down to 8. I have nephew who is being assessed for Paired Donation the week after Easter. Two people who have applied to be my donor have been told that there is a donor in evaluation and they are on hold. However no one can tell me if the person being tested is for Paired Donation or Direct Donation.

@dshaver, Oh my goodness. You are having a ruff month for sure.
I am not real knowledgeable on living donation, but I am pretty sure that any information about who/what/why of evaluations is strictly confidential. I do understand you wanting to know, though. You will most likely not know anything until everything is 100% certain

Thank you for the update. I will be praying that all will progress in a sequence that will best for you in the long term.

Are you on dialysis? I know that you must be worried beyond words.
Overall, how are you feeling?

Rosemary

@dshaver In 2012, my husband had a living donation from our brother-in-law (unrelated). We imagined that there would be a big operating room with brother-in-law on one table and my husband on the other. This could not have been farther from the truth. The two departments are not allowed to communicate donors to recipients, or vice-versa. In other words, the donor department is never going to talk to you. Any questions about hepatitis should be addressed by YOUR transplant doctor.

We, of course, were told by our brother-in-law that he was a perfect match!

Thanks for your support and prayers. I’m not on dialysis. Some days I’m my normal self with a lot of energy. Some days all I do is sleep. Recently I’ve been having insomnia. Sometimes I don’t sleep for days.
Thank Yoy
Denise

@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.
Rosemary

@dshaver, Denise, I'm just dropping in to say "Hi". I'n thinking about you.
Rosemary

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

Hello @janmitchell2003,

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.

mlmcg