Nephrectomy & Kidney Transplant: How long does it take to recover?

Posted by stephanierp @stephanierp, Mar 30 9:28pm

Hello,
I had a nephrectomy and kidney transplant, due to advanced PKD, 7 weeks ago Wednesday. I am beyond grateful to my donor for this gift! I am also feeling very isolated as I try to heal from a surgery, I was not prepared would feel so catastrophic. Some days I am able to take short nature walks, cook dinner and do light housekeeping. Other days, like today, I can hardly stand without excruciating backaches and the sensation my insides might tumble out of my abdomen, if I don’t hold my stomach muscles with everything I’ve got. Are there any other nephrectomy patients,, who could help me not feel so alone in this process, by sharing what their recovery was like? I am a 54 year old dance teacher, who is wondering if she will ever feel whole and healthy again. The transplant patients I have talked to had kidney transplants but not a nephrectomy, and at least for me, their experience doesn’t sound anything like what I am experiencing.
Thank you!

@stephanierp Hi welcome to connect and congratulations on your Transplant. Yes I can relate was a Heart transplant now 2 years ago and while I can't know the specifics of a kidney transplant I can reassure you that things will get better. I felt the same way the first few months after mine. Every day will be different and the not so good days will get farther apart. But don't give up you will have great days and try to not think about the other days. I'm not sure how to do it yet but I know someone will probably steer you towards other kidney transplant patients.
Have a blessed Day
Dana

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Hello @stephanierp

Welcome to Connect! I am so excited for your new kidney, I also had a kidney transplant and a bi-lateral nephrectomy because of PKD. Like @danab mentioned there will be some bad days but they are part of healing. With PKD I was getting sicker everyday but after transplant I got stronger everyday.

I can relate to feeling isolated and weak during the healing process, you can't really do chores well, sort your closet or be productive and the transplant teams want to keep you away from other people for quite awhile. Good news is…The Connect Community is right here, filled with lots of people who can relate to your situation and keep you company while you heal. I remember after transplant I had to wait for my husband to get home from work to take the clothes out of the washing machine because I was too weak to lift them when they were wet. Once my wound healed physical therapy was really important for me to gain my strength and endurance, without it I would never have fully recovered.

I can't wait to hear more about your transplant! Was it preemptive or were you on dialysis first? Was it an open nephrectomy or was it laparoscopic? Do you have someone helping you at home while you recover? Feel free to share as much or as little of your journey as you like.

I'm so happy for you and the beginning of your new chapter

@jolinda

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@stephanierp, Congratulations on your successful transplant. I am a liver and kidney recipient. During my recovery, I also had good days and not so good days. I also experienced days as you describe where my back and abdomen hurt, and it frightened me. I soon learned that this was my body telling me to slow down. Daily naps helped me and I had to convince myself that this was okay to do. You will feel whole and healthy again.

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@danab

@stephanierp Hi welcome to connect and congratulations on your Transplant. Yes I can relate was a Heart transplant now 2 years ago and while I can't know the specifics of a kidney transplant I can reassure you that things will get better. I felt the same way the first few months after mine. Every day will be different and the not so good days will get farther apart. But don't give up you will have great days and try to not think about the other days. I'm not sure how to do it yet but I know someone will probably steer you towards other kidney transplant patients.
Have a blessed Day
Dana

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Thank you, Dana for sharing your experience! Your words are very reassuring!

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@jolinda

Hello @stephanierp

Welcome to Connect! I am so excited for your new kidney, I also had a kidney transplant and a bi-lateral nephrectomy because of PKD. Like @danab mentioned there will be some bad days but they are part of healing. With PKD I was getting sicker everyday but after transplant I got stronger everyday.

I can relate to feeling isolated and weak during the healing process, you can't really do chores well, sort your closet or be productive and the transplant teams want to keep you away from other people for quite awhile. Good news is…The Connect Community is right here, filled with lots of people who can relate to your situation and keep you company while you heal. I remember after transplant I had to wait for my husband to get home from work to take the clothes out of the washing machine because I was too weak to lift them when they were wet. Once my wound healed physical therapy was really important for me to gain my strength and endurance, without it I would never have fully recovered.

I can't wait to hear more about your transplant! Was it preemptive or were you on dialysis first? Was it an open nephrectomy or was it laparoscopic? Do you have someone helping you at home while you recover? Feel free to share as much or as little of your journey as you like.

I'm so happy for you and the beginning of your new chapter

@jolinda

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Thank you Jolinda and Rosemary for reaching out. It is so helpful to hear directly for transplant peeps! Yes, Rosemary, I will try to fit in a nap and listen to my body telling me to slow down.

Jolinda – My transplant was preemptive – just barely before dialysis- and was an open nephrectomy that had some unexpected challenges once they got in. PKD kidneys can be a bit challenging, attaching to other organs, and then some challenges with ultra-thin artery walls. I am so grateful to have had a surgical team that was able to complete the surgery successfully. The challenge is they had to open me more (over a 13 inch scar from left rib to right crotch) and needed to do a lot of manipulating to remove the kidney. All of which left me feeling gutted and frightened of a second nephrectomy in 6 months. I am very interested in hearing from anyone with PKD, who has had a laparoscopic nephrectomy.

And I have a wonderful husband and 14 year old son, at home helping me and now my daughter is home from her senior year of college, as her school, like most, is closed due to COVID19. I don't know what I expected post-transplant life to look like, but safe to say, a pandemic was not in my vision:) It has definitely added to the sensation of feeling isolated and in a new world, in which the landscape is familiar, yet dramatically altered.

The good news is I am healing, and I suppose I just tried to jump back into exercise a bit too soon. I really like being active and once I hit my 6 week mark tried to start some elementary dance exercises my body just wasn't ready to support. Yesterday was painful. Today I feel better. I will just walk for physical therapy another week.

Again, thank you all for your quick responses. It feels good to be connected!

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