Still tired post kidney transplant

Posted by dshaver @dshaver, Sep 12, 2018


  • I am 50 days post transplant. I was transplanted with pediatric kidneys en bloc. I still have some pain near the bladder. And I still get tired. My GFR is 24 and my creatinine is 2.2-2.1.
    I know my little kidneys will grow. I was expecting a quicker recovery. Is it normal
    To be tired sometimes and have a lot of energy on other days?

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@dshaver
I am happy that you were able to receive a transplant (en block is both kidneys - right?) and I'm sorry to hear you are feeling rough still. I had the same tiredness post transplant, I felt bad even bringing it up because I was so grateful and didn't want to complain. At first my team thought it was low iron that was my biggest issue (and it was very low) but what really helped me in the end was Physical Therapy. I had been so sick and really needed help getting my strength back post transplant. Hope this helps, feel better soon.
Jolinda

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@dshaver my husband is 2 months post for a liver transplant. He feels pretty good most days, but he does still have some pain and is tired on other days. You just went through a major surgery and depending on how sick you were before, still being tired and sore isn't unusual, in my opinion. Like @jolinda said, perhaps some physical therapy may be a good option for you. Ask your care team first, of course!
Blessings,
JoDee

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@dshaver First - I must offer my congratulations on your kidney transplant! I am happy for you. The last time we communicated, you were still waiting.

There is no standard amount of time for a full recovery and return to 'normal' activities. I was very ill prior to my transplant, (both liver and kidney); I was also very active up until 10 months before my surgery. It took me almost a full year to get over all of the pains, and regain most of my energy. I remember having less endurance for what seemed like forever, but even that was so much better that my bedridden times and muscle wasting.

My transplant was in April 2009, and in November 2009, I was able to spend some time in the Great Smokey Mountains and do some day hiking with my husband. We did do shorter hikes than we are accustomed to, however it was our way of celebrating my New Life.

One thing that I did, and that I will suggest is a daily nap. Give yourself the permission to nap or rest quietly each day. My dear husband would make sure that no one interrupted me. We figured that my body needed that rest to regain what it needed. Even today I will not deprive myself of a nap if I begin to feel tired.
Another thing that I will share is that, for me, I learned that I can take 2X as long as 'normal' person to fully get over something like a cold, minor sore throat, a minor cut or bruise. I figure that the immunosuppressants do that to me.

I give you permission to take it easy, and to pamper yourself and those new kidneys!
What other questions do you have?

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@dshaver, I'm getting caught up on correspondence that I neglected during a recent trip (and my rest afterwards). I want you to know that I have not forgotten about you and your long journey to transplant.
How is the recovery coming along for you? How are you feeling? What kind of questions do you have?

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I’m doing so much better. I had my transplant on July 23rd 2018 and feel very
Blessed. I have had ups and downs and even though it’s been 2 months an 2 weeks since my transplant- I still have days where I’m a little impatient.
I recently got over a bacterial infection deep in the tissue. It’s been a roller coaster. But I it’s all part of the path. I do give myself permission to take naps and I’ve hired a fitness coach to get some of my core strength back. I was very active up to three month before my transplant. Now my skin and muscles hang. I’m sure Gaining strength will help me. Thanks so much for your words
Denise

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@dshaver

I’m doing so much better. I had my transplant on July 23rd 2018 and feel very
Blessed. I have had ups and downs and even though it’s been 2 months an 2 weeks since my transplant- I still have days where I’m a little impatient.
I recently got over a bacterial infection deep in the tissue. It’s been a roller coaster. But I it’s all part of the path. I do give myself permission to take naps and I’ve hired a fitness coach to get some of my core strength back. I was very active up to three month before my transplant. Now my skin and muscles hang. I’m sure Gaining strength will help me. Thanks so much for your words
Denise

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Yes, July 23rd is a special day that you can honor and celebrate every year.
I am happy to hear from you. There will be bumps in the road, just remember that prompt action is best way to react. Be patient, and keep moving ahead and listen to your body so you don't over do it.

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Your energy will come back and your skin will fit again!

Denise, Here is something that you might like to look at: Self-Care Tips for Transplant Patients. It includes a link to a list of 'transplant hacks' developed by members in the transplant discussions, as well as information about weight after transplant.

https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
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Denise, I'm thinking about you. I hope that your body continues to gain strength.

Have you had a chance to read the self care tips? Which ones were helpful for you?

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Rosemary,
I am doing well. My kidney function is around 26 and fluctuates as does my
Creatinine. I found the article on weight gain helped a lot. I have gained about 7 pounds and don’t want to gain anymore. I realize it’s math. Food intake verses
exercise output. Also my hair is falling out. I’m taking biotin and using biotin
shampoo. I’m feeling more like myself every day. I’m working out at the gym
three days a week. This is helping me get my core strength back. I have my
4 month checkup in mid November.
Thank you for all your support.
Yes
Denise

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