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Transplant for special needs

Posted by kidneymom @kidneymom, May 8 9:53am

My son was born with kidney failure and after 4 years on dialysis I was able to donate a kidney to him when he was 5. He had it at UCLA.

He has had that transplant for almost 28 years, but he's now getting close to needing another transplant. (last gfr was 17.)

My son has autism (more on the mild side.) I am his legal guardian and I take care of all his medical care.

Has anyone had a child or adult had a kidney transplant at Mayo?

I'm very anxious since he's been stable for so long. His last surgery was when he was 19 years old.

He has been evaluated at UCSF, but I'm looking at other centers to see if there might be a better fit elsewhere.

We live in Montana and they don't do transplants here, so we will have to travel out of state. I'm hoping we can find a living donor. No one i our family is able to donate due to health conditions.

Sorry for the long post, just anxious!

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 10 1:03pm

@kidneymom, I want to comment your son and you for taking such good care of his transplanted kidney. I am a patient with a liver and kidney transplant that I received at Mayo Clinic in Rochester MN in 2009. I live nearly 800 miles away in central Kentucky, and have met other patients who also live at a significant distance. There are 3 Mayo locations. I was sent to the Rochester location because of the kind of treatment that I needed.

I would like to encourage you to reach out to Mayo Clinic and to ask them the same question that you have asked here. Here is the link to the Mayo Clinic Kidney Transplant Center. You will want to scroll down the opening page to the "Contact us with questions" section. That is where you will find contact information.
https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197
Is your son on dialysis?

REPLY
stephanierp | @stephanierp | May 13 7:40am

I received my kidney transplant at IU Transplant and they were very good, and I am grateful. However, after doing a subsequent removal of my old PKD kidney surgery at Mayo in Rochester, I would highly recommend Mayo in Rochester. They are are the best and were very mindful of doing the surgery (and they would also have done transplant) laparoscopically, rather than open. This makes the healing process so much easier for the patient. I wish you and your soon the best possible outcome. Blessings!

REPLY
1 reply
rachel5239 | @rachel5239 | May 17 10:15am
In reply to @stephanierp "I received my kidney transplant at IU Transplant and they were very good, and I am..." + (show)
@stephanierp

I received my kidney transplant at IU Transplant and they were very good, and I am grateful. However, after doing a subsequent removal of my old PKD kidney surgery at Mayo in Rochester, I would highly recommend Mayo in Rochester. They are are the best and were very mindful of doing the surgery (and they would also have done transplant) laparoscopically, rather than open. This makes the healing process so much easier for the patient. I wish you and your soon the best possible outcome. Blessings!

Jump to this post

I go to Mayo in Rochester. I haven’t met a doctor yet that I haven’t liked or felt uncomfortable with. I had a liver transplant there and I am 38 years post transplant. It is definitely a journey worth taking. Best wishes to your young son.

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