What does having a NEW KIDNEY feel like?

[Imaanforever]

Hi All,

I have been in the transplant list for a year now and still waiting to get called.

I can’t just help to wonder what having a kidney transplant will feel like. Apart from the fact that it will be a gift of life and freedom from being tied down to dialysis. What does it feel like?

Will you have more energy than when on dialysis? Do you feel healthy? Feel any pain or discomfort? Feel like your old self before kidney failure? Can you eat what you like or you have a special diet?

All I know is you take a lot more medication to ensure the kidney takes. Do you take these meds for the rest of your new kidney’s life?

Can anyone with experience please answer my question? How have you been since you received your kidney transplant?

[Bunkin]

hi, I had my transplant feb of 2021. I expected to wake up from surgery running around the hospital 😂😂 that was not the case. First I had a lot of pain at surgery site. It took me a while to get past that. About the 2nd month after my transplant my knee started to buckle. Then the pain came in my back and legs. My feet neuropathy that I got during dialysis became worse. It’s been like that for almost 3 years now. However I hurt my knee about a month ago and could hardly stand. Finally went to the doctor and she gave me medrol dose pack and Voltaren cream. The first day I felt amazing. I finally feel like I’m getting somewhere with this pain thing. I’ve complained to nephrologist for years but never taken seriously. I tell this story not to scare you but in case anybody else is experiencing this!! I don’t know if it will last, the relief from pain is such a blessing I’m just enjoying it.

I eat what I want. However I wish I had watched it closer because the prednisone has made me gain alot of weight! And not being able to walk well I can’t exercise enough to get it off.

Also I have been low on energy but this week after getting rid of the pain I have had a lot of energy. I think the mental anguish of constant pain just drains me. This week I felt like my old self!!

[Imaanforever in reply to Bunkin]

thanks for sharing. I pray you continue to feel like your old self.

[WYOAnne NKF Ambassador]

A new kidney is LIFE!! OK, you should probably know that the surgery takes awhile to heal. You are on massive doses of immunosuppressants at first to prevent rejection. What does that mean....you will heal more slowly than normal. At first, I had a lot of GI issues due to these meds. The important thing to always remember that if you have a problem you contact your transplant team. I wound up having to take name brand Myfortic and Neoral rather than the cheaper generic meds. My dose of both was lowered and still on the same dose now. That first year was a little rough figuring this all out.

I had my transplant in 1999, yes over 24 years ago. I was so pale, anemic and tired all of the time before my transplant. But I know before I was even out of the hospital I had color in my face and was getting some energy. At 2 weeks, I started walking around the block and gradually increased the distance.

My labs even now are fantastic. In October my creatinine remains at 0.8 with a eGFR of 90.

Labs are done every 3 months . And yes I still take the same dose of Myfortic and Neoral. I am not diabetic and I can eat anything I want. I do try to eat heart healthy and still do avoid added salt. I am normal! My husband and I traveled to Europe, Canada, Caribbean, Mexico, etc. We both retired recently and moved to Wyoming to be near the mountains.

Please feel free to "chat" with any other questions you may have. Life is pretty special and a transplant is a true MIRACLE and 2nd chance at life.

Take care!

[Imaanforever in reply to WYOAnne]

Oh wow @WYOAnne

This is so good to hear. Your story gives me hope. 24 years!!! That’s amazing. I always read that a kidney won’t last more than 10 years from a dead donor and about 15 years from a living donor. So it’s good news to hear you’ve had yours for 24 years and counting.

Did you get your kidney from a living or dead donor?

[WYOAnne NKF Ambassador in reply to Imaanforever]

My kidney came from a 16 year old deceased donor. His kidney matched 4/6 of my tissue markers.

[bubbaboo2]

I had a kidney transplant in 1996 after 2 years of dialysis and it was like going from 10 to 100, I had a perfect match from a male donar and I felt 100% the very next day and I had to take immune suppressants but I had my first kidney 27 years and I did not regret 1 day of freedom. I lost my son and my kidney in 2020 and am on list for second transplant. If you have a " I want this " attitude then you will feel just like before. Happy holidays and God bless.

[Imaanforever in reply to bubbaboo2]

Accept my condolence for the loss of your dear son. Thanks for sharing.

[bubbaboo2 in reply to Imaanforever]

Thank you for your condolence for my sweet son, what a great loss. I know I will be with him again, I just hope I get another transplant before then. Merry Christmas and Happy 2024. God bless.💚💚💚💚💚

[bluekidney]

Hi I second everything everyone else has said before. Everyone heals differently and ends up with different experiences. I felt great after my transplant two years ago July 2021. It took time to adjust to the physical changes that came from being on dialysis for 5 years like lack of sweating since I was healing in the summer that was tough to adjust to. I had all this extra energy and I was able to do many things that I was limited to before. As nerves started healing that’s when the pain kicked in not overwhelming just pain from healing. When winter and cold weather came about I started feeling debilitating joint pain in my legs but I learned to deal with it got vitamin B12 supplements and that helped out as well as layering up from the pain creeping up. I have shaky hands from the prograf but I am hoping the team will lower it soon to help with my tremors.

The important thing is to work with your transplant team to help with any issues that may arise so they can adjust medications and help other underlying conditions that may present themselves. Everyone is different so it’s important to know your body and have good communication with your team.

As far as medication they change over time. I left the hospital taking 32 different pills a day. I didn’t have any other underlying conditions other hyperparathyroism from dialysis that resolved after transplant. Today I only take 4 medicines 6 pills in the am and 3 in the pm. They are still lowering my doses so I am expecting to get rid of some pills soon.

Eating is no longer limited except foods that interact with tacrolimus like grapefruit and pomegranates you get a list from your team. You just have to be careful because it’s easy to gain a lot of weight. I am still struggling with weight loss now.

Wish you the best of luck in your journey. Everyone’s is different but for me it has been a great journey you feel different from the start and for me it has improved my quality of life even with the minor side effects I will take those over dialysis anytime!