Looking for what to expect as I consider Kidney Transplant

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.

Ginger, Thanks for the link to the article on the relationship between heart disease and dialysis. It answered my question, "Why is heart disease the leading cause of death in people with kidney failure." I am not sure I would have found that site without your help! I left a message for Hubby's cardiac team describing his kidney disease, and they will meet with him next week. Hopefully, they will also discuss with him the importance of a healthy diet, exercise, maintenance of healthy blood pressure, cholesterol, calcium, phosphorus, blood sugar levels, and the reduction of stress. It feels as though we are trying to teach an old dog new tricks. Intellectually, Hubby may not realize the seriousness of the situation...that his poor choices are putting his life at risk. Perhaps he thinks it is too late to make a difference in the outcome of his heart disease/kidney disease diagnosis, or he is so depressed it seems like a impossible situation. I believe the heart disease/kidney disease can be treated, but not if he continues to make poor choices and ignore the consequences. For me, it is like watching a ship sink to the bottom of the ocean. I can only hope other readers will take responsibility for their health and make good choices, at least for the benefit of their families. For now, I will go pick up our Thanksgiving dinner order the store could not find yesterday (LOL). Love to everyone!

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!

Your son had a bone marrow transplant at the same age as my son and my son just turned 34. I am so sorry your son did not survive. At the time that they had BMT transplants the survival rate was very low. I have of course been grateful my son survived and he has bern cancer free since but life has often been difficult and challenging for him in other ways (and me by extension) because of the cancer treatment experience.
We are located in Houston with several very good kidney transplant clinic options. We have talked with Mayo and need to complete testing there. He is currently listed with 3 clinics locally. Two of which we recently discovered will use rapid steroid withdrawal if the match is good enough. One of them called us last week with an excellent match but 2 hours before surgery we were told the biopsy report could not be verified and they called off the transplant. But through this we learned he is at the top end of the list for that clinic. One of the other clinics is preparing to take me to committee to see if I will be approved as his donor and as well as a couple of others we have found through social media that stepped up to donate (I am overwhelmed with their generosity). So all and all it seems things are moving along at a faster rate and we are hopeful he will be transplanted in the next several weeks.

Are you doing well following your transplant? Did you have a dedicated live donors?

Good morning @kandyh
Thank you for your concern. My son had an extremely rare soft tissue sarcoma DSRCT and got 3 years when they didn’t know if he would get a month so I am grateful for that time.
I had a living donor kidney tx with bilateral nephrectomy due to PKD. (much bigger surgery than tx only) Thankfully, I continue to have no rejection, no BK virus or CMV infection even though my GFR is only 29. I avoided dialysis and am so grateful for my cousin and Mayo. I had a 5 out of 6 HLA mismatch, but no adverse reactions. A perfect match is not always needed as long as it is right blood type, no adverse reactions and the correct balance of immune suppressants. I hope this helps. I am so glad to hear it looks like your son will get a kidney very soon! I know you both have been though so much. I will be thinking of you both and praying he receives the perfect kidney at the perfect time!

I would say having just had a kidney transplant after only 6 mos on PD, that a transplant is worth it! PD kept me at home and fearful to travel and swim and shower, and fearful of peritonitis. Yes, the recovery is much longer than I expected from the transplant but I hope I will live now into my 80's and I did not think I would make it that long. Any dialysis is very hard on the heart and mind and I just got rid of all of my dialysis supplies and machine. I would say to expect a recovery time of 2-3 months, not weeks depending on your age and health issues. But good luck and good life, BB

@sarah82 I don't want to hijack this transplant discussion and change topics. However, I did want to respond to you, and let you know that in general, kidney disease is a subtle change. For the most part, people are not really aware of the slide into poor kidney health. Our bodies are miracle machines, and learn to adapt as the function goes down. That said, sometimes it is hard to realize that what we are doing is not in our kidneys' best interest, as we have been "getting by just fine". Realizing we now need to make serious/dramatic changes can be disheartening, or scary, or overwhelming. I look forward to hearing your husband's team was able to help him understand the importance of changes to be made, and of your support.
Ginger

https://www.otsukapatiented.com/kidney-disease/community-stories/guilt-during-pkd-journey

Kimberly and Brenda

My husband is one month post transplant (tomorrow 🙂 ) and I can confidently say 1000% transplant. Dialysis keeps you alive while waiting for a transplant but it does not keep you thriving. Blood pressure complications, risk of infections, increasing exhaustion, dietary restrictions were all things we battled with dialysis. A transplant does have its risks of course but the same goes for dialysis. The longer he was on it, the more ill effects we saw. Just one week post transplant, my husband feels better than he has in years if that is any indication of the incredible gift it is. For frame of reference, he has Iga and his sister was a perfect match live donor. Good luck to you as you navigate these decisions.