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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.
Ok I was going to go with pd if I ever get to that point. I can’t see how I could go to a center I have a set work schedule don’t see how it would work without quitting my job. May I ask was your transplant through Mayo Clinic.
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Hi @rosemarya Thanks for the welcome! Congratulations on your 8.75 year anniversary! 🙂 I can’t believe it’s already been 8 years for me and my brother, who selflessly gave me one of his kidneys.
I was diagnosed with Berger’s Disease when I was 20. (I got food poisoning and my primary care doctor wanted me to go into the hospital for tests. All he told me was I had some questionable blood work he wanted to check further.) I was lucky in that I was able to keep my own kidneys until I was 50. I was told by my nephrologist at the time (we had moved to a different city for my husband’s job) that it is extremely rare for someone to have working kidneys for 30 years after diagnosis.
Lodging for the transplant patient and 1 caregiver. You have to be a transplant patient to stay there.
ok. Good to know. 🙂 Thank you!!
Hi @oregongirl – There is housing available for transplant patients and their families at each of our campuses. Below I’m pasting links to check out the Gift of Life Transplant House (located in Rochester), and The Village at Mayo Clinic (located in Phoenix). I hope they help!
Yes you are right. My entire life I have been a planner. I see oncologist next week. I don’t like making snap decisions. If you think I am bad, my son is in truly a planner. He had brain surgery about a year ago. We had family staying with us researching the best doctors in the USA. He is a genius. He planned every step of the way. He even spent hours with his sister planning his companies future. Neither of us like disruptions like this, but we are ready when decisions need to be made.
@kidney09, Thank you for sharing your experience. I send along with this reply, a sincere thank you and appreciation to your brother who gave you one of his kidneys.
You were very fortunate to have a good PCP. I also remember when my PCP said the very same words about “some questionable blood work”. I was diagnosed with a liver disease, and monitored for around 8 years before I needed a liver transplant, then the acute renal failure happened. So my only experience with kidney issues is a very short one until I got my transplant of both liver/kidney from an anonymous deceased donor.
Was the Berger’s Disease related to the food poisoning incident, or, was it because of that incident that your kidney disease was discovered? When did you learn of the need for a transplant?
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
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.
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/
@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.
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