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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14 9:57pm | Replies (1677)Comment receiving replies
I too am a SLK transplant recipient (simultaneous liver and kidney, at Mayo Clinic, June 2014), and until recently had big issues with appetite, esculatory pleasure, and weight maintenance. Post transplant I had all of the possible complications: rejection, infections, astonishing pain, etc. and found most foods abhorrent, even ones I had previously enjoyed.
It got to the point that I was facing another NG tube.
But I hung in there, kept a calorie diary aiming for 2000 kcal/day, not always making it but always trying. I drank high calorie shakes and a kidney supplement.
Nowadays I maintain a good weight and even sometimes have to trim back my snacking. I think time, occasional cannabis (legal in my state) and proper pain control all helped. I’m also blessed with very supportive caregivers who ply me with nutritious goodies. I became a vegetarian post transplant as I found the taste and consistency of meat, even chicken, abhorrent. This has had the positive side effect of lower cholesterol values. As an additional plus, I quit consuming alcohol and tobacco pre transplant and never resumed.
Anyhow, my trip post transplant is still fraught, and I stick close to my local doc as well as the Mayo transplant team. Right now I’m dealing with spine and other bone issues, as well as a mystery lesion in my lung, already scarred from surgery to treat a fungal infection.
But as I’ve learned to say, my worst day post transplant still beats my best day with ESLD and kidney failure.
That’s all I can offer right now.
Best regards to all of you on your transplant journey.
Replies to "I too am a SLK transplant recipient (simultaneous liver and kidney, at Mayo Clinic, June 2014),..."
So much bravery. It is great to know that despite your difficulties you are getting on with your life and you are still here to enjoy things like the night sky, good music, and each new day. I applaud your courage and thank you for sharing. It makes this world a better place.
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@emil, I want to welcome you to Mayo Connect. I see that you have recently joined in Dec. I am happy that you have posted in the transplant discussion, and especially happy to meet you, and learn that you, too, are a SLK transplant recipient! I haven't met many others. Have you?
I like what you said about your worst day post transplant still beats your best day with ESLD and kidney failure. I have, and still, say the same thing.
I needed a liver for PSC (Primary Sclerosing Cholangitis) and then developed acute kidney failure. I was on the waiting list for a liver in Kentucky, but had to be inactivated from the transplant list because attempts to get a biopsy and diagnosis for bile duct cancer were unsuccessful. I was scheduled for an appointment at Mayo to get a diagnosis and then return home. But my kidneys failed and ended up in ICU in critical condition with emergency dialysis. After 5 days I was flown from ICU to Mayo Rochester. I spent the entire spring of 2009 in Rochester at Gift of Life House with intervals in the Mayo Methodist Hospital. I was on dialysis until transplant on April 22. three weeks later I was able to return home. I (with my husband) do return to Mayo annually for follow-up evaluation. My local PCP takes good care of me during the rest of the year.
Here are some discussions that I want to suggest to you:
Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
Snapshots of hope: Life on the other side of transplant.https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I hope that you will get some answers about your lung lesions. Are you being monitored for that? Do you return to Mayo for an annual evaluation?