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Looking for what to expect as I consider Kidney Transplant
Transplants | Last Active: Apr 17, 2023 | Replies (201)Comment receiving replies
I am here for my 33 yr old son. He is a childhood cancer survivor and had a bone marrow transplant when he was 13. He has done exceptionally well follow that transplant. However radiation and antiviral meds caused the start of his kidney damage. Over the years they worsen but were “hanging in there” until he was given remdiziver last November and lost kidney function and has been on dialysis since. Intially we had 3 possible donors but all 3 have been eliminated for health reasons. We are in Houston and have quite a few transplant centers in our area. But non offer non- steroid protocols for post kidney transplant. My son has a lot of difficulty with even low doses(5%) of prednisone. We are hopeful Mayo can help him.
Replies to "I am here for my 33 yr old son. He is a childhood cancer survivor and..."
Hi Kandy,
I just had my kidney transplant done at Mayo in Rochester, MN on October 27 and every person my wife and I dealt with was truly amazing!!!! Their team concept for your care and the caring culture at Mayo is one of a kind and I believe makes a big difference and why they are the best in the world.
Best of luck to your son.
Hello @kandyh
Welcome to Connect,
My heart goes out to you and your son in dealing with his long term side effects of a childhood cancer battle! I am always happy to hear about survivors. My son Jacob also fought cancer for three years, had a BMT at 13, and would be 34.
It saddens me that they gave your son remdesivir with his reduced function as I was told not to take it as it is contraindicated for kidney patients.
I had a kidney transplant 12/7/20 at Mayo Rochester and only had prednisone immediately following, but it was stopped before I was released several days later. I would echo the others to reach out to a Mayo transplant center and explain everything to them about your son’s history. Most likely you will first talk to a nurse coordinator over the phone who will guide you. I would certainly try Mayo because if anyone can do it, they can in my opinion. They will also be honest with you, because they will only want the best outcome for your son. Maybe you have already reached out by now? I just returned from Mayo last evening-their Dr’s and staff are very caring in my experience. Please let us know what you find out!
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@kandyh, I found this information about non-steroid protocols under the information about the Kidney Transplant Department at Mayo Clinic.
-Steroid-free immunosuppression protocols
https://www.mayoclinic.org/departments-centers/kidney-transplant/steroid-free-immunosuppression-protocols/
Kandy, If I were you, I would contact Mayo. You will see a "Contact Us" with phone and email contact information.
I hope that there is a solution for your son's complex situation. Will you let me know if there is a non-steroidal medication that can be substituted for him?