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
February 14 is Valentine’s Day !! Did you know that February 14 is also the day another national celebration ???? National Donor Day – Celebrating the Gift of Life
I want to share the Mayo Clinic newsfeed with all of you who have participated in this Kidney Transplant discussion. I invite you to add your comment to the end of the article. I hope to see you there as we celebrate and promote organ donation.
I’m thinking of all of you, and I hope that you are doing well. Rosemary
Liked by @tbirdmunchkin
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Thank you! Sometimes the kidney is doing better than I am. All is well. mlmcg
I was wondering if anyone has information
about hepatitis. I have a direct donor who had hepatitis over 30 years ago. The donor department will not tell me anything.
Liked by Rosemary, Volunteer Mentor
I would think you have a right to know all the facts of your donor. My reading about my own issues lately caused me to read an insert that said some diseases can be triggered back into action by some treatments or medications you take. I am not sure this is word for word. But, I certainly would research it and demand answers on you donor. That does not mean you won’t go through with it, but it WILL BE YOUR KIDNEY in the end. I would google the question on Google of course, or ask your doctor. Do you have RA? Are you receiving meds for the RA? That is what I have and this is the place I saw the comment. Cannot find it right now. Just ask again.
I want to share two reliable resources with you. I hope that they can give you some of the information that you are searching for. Both have information about recipients and donor, as well as an easy read Q&A.
The United Network for Organ Sharing – https://unos.org/ – scroll down the opening page.
Mayo Clinic Transplant Page with Recipient and Donor Toolkits – https://connect.mayoclinic.org/page/transplant/tab/resource-33/
Liked by Kanaaz Pereira, Connect Moderator
@oregongirl, It is my understanding that confidentiality and privacy are of utmost importance for both donor and recipient.
You do have a good point about it being ‘your kidney’, though. And this is particular concern is already addressed by the transplant requirements with the potential recipient if/when it occurs.
Liked by Colleen Young, Connect Director
@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.
I was put on the transplant list about 7 months before I went on dialysis, if I had not gone on dialysis when I did I would not be here. It took another 5 years before I had my transplant. Doctors, today, will not give anyone a kidney that will hurt them. While I was in the hospital I gave enough blood to fill 10 vials for the lab to make sure I was a good match for the kidney waiting for me. We have been good friends for the last 10 years. Anytime I see a new doctor, I let that doctor know my kidney comes first. If you are fearful of surgery and you have never had surgery before, yes, it can be scary. I stopped counting the number of times I have been cut on before I reached 20. Each time it gets easier. Good luck. mlmcg
@lcamino, and kidney patients,
Recently a member made a comment in a different transplant thread that I feel might be informative in this thread about kidney transplant. I think that whether someone has PKD; is waiting for a transplant; has received a kidney transplant; and family and loved ones might benefit with a place to ask questions and share their experiences with polycystic kidney disease (PKD).
I invite members to join in with any questions or experiences.
I was on a post that talked about life after kidney transplant. Not medical, foods eating out etc. I lost it. How to find it again
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/
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?
@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.
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