Anyone else have double nephrectomy w Kidney transplant?

[Rocknlily]

I am right at 3 months and still not completely recovered. I had double nephrectomy one day and transplant the next. anyone else have this? It has been a very hard recovery. Every week seems to bring a new problem. I began feeling emotionally drained last week. Struggles there now. My dr. rapidly decreased the prednisone, wondering if that has anything to do with my emotional struggles. Instead of four weeks tapering on a strength, she said just take it for one week, I want you off the high steroid dosage. If anyone could offer support or be relatable I would appreciate it. This is my first day here, so I am still learning.

[Ski573]

I am so sorry to hear ….. I had the transplant only but be assured that this is a journey. There are days I feel amazing and days that I feel tired/pain. And I’m 4 months from transplant. Your body is still healing after a very major trauma. Give yourself a break and know that it will get better. My transplant team said that it takes a year to fully heal. When I get down, I do things that help me relax. Congrats on you our new kidney !

[Rocknlily]

Thank you for the reply Ski. Congrats on your kidney also!

[Trayaurus]

Hi, i had a transplant in 2019, it took me 3 years to totally recover, from sickness, digestive problems,alsorts. I am finally doing ok, but still get exhausted sometimes, always feel tired, but keep pushing on. Early days for you, so just do what your body says and wait to heal. All the best, it is a long journey, but, you will get there

[Rocknlily in reply to Trayaurus]

Thank you. I appreciate the encouragement. I often hear "well, I know someone who had a Transplant they were fine after a couple of months...etc." Every one is different. I admire your strength and attitude and wish you well. Thank you for the reply!

[Live_Positive]

Hello Rocknliky - I am nearing 2 month post transplant. First of all , I would advise you to be positive. An year ago, I could see no light and today it is a thing of past. I always think, if I could cross such a mountain of struggle to be here, I would sail though all my next obstacle. Hope and Faith are the best medication, that helps healing.

It is a journey and it will have ups and downs. Just be strong, when you are mentally strong, your body fights even when you are asleep.

Sending all my positive vibe !!! BeStrong !!!! Celebrate life !!!

[Rocknlily in reply to Live_Positive]

How are you doing? Thanks for the positive vibes! I love your user name!Faith and hope are vital.

[EricaTO]

Wow. I had a double nephrectomy about 6 months after my transplant. The surgeon was all set to do it just a couple of months later, but I wanted to wait a bit. There was a slight complication; I ended up with a splenectomy as well. So maybe it is not that much easier to wait. Certainly, your doctors would not have done this if not safe for you, and now you do not have to go through major surgery all over again! My advice is to be kind to yourself. Allow your body to recover at its own pace. Medications are tricky to balance in ANY case, so you might have had the same situation without the additional surgery. In the long run, your will feel much healthier. I wish you the best.

[Rocknlily in reply to EricaTO]

The recommended time for a nephrectomy, only if you HAVE to have one, is 6 months, so you probably made the right decision. I HAD to have one before because my kidneys were very large and the surgeon showed us on the screen there was NO room to put a new kidney. I feel blessed to be alive. Thank you for the reply! I hope you are doing well.

[Gsd5-14]

I had a double nephrectomy at the same time I got a living donor kidney from my wife four years ago in 2018 and it was tough in the beginning but stick with it as time goes by I’ve noticed everything starts getting back to normal and I’ve ver been feeling great for the past two years so there is light at the end of the tunnel just be patient and listen to your team, good luck 😀

[Rocknlily in reply to Gsd5-14]

That is good to know. Thanks for the encouragement.