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This and That and Talk - My Transplant

Transplants | Last Active: Feb 14, 2023 | Replies (1670)

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@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my 'normal' medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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Replies to "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..."

@contentandwell

That sounds great, JK! Everyone that I know who has been to Hawaii has said the same thing. How unfortunate about the scanners, though.

That is so good that you enjoyed the time with your son and his southern belle - she sounds delightful!

Teresa

About visiting Hawaii! I am from a full season state (North Dakota) and was constantly amazed at the way things were constructed in Hawaii. We were on Oahu and drove the coastal highways often. I was constantly amazed at the slope of the driveways and how close the vegetation was allowed to grow next to the roads. I could actually reach out the window in places and pick a leaf off a tree! I kept thinking how glad I was visiting then and not in the winter! We were there in January/February! lol I commented often on how stupid it was to build such steep slopes because the would become impassable when the snow and ice hit. Oh yeah, it doesn't snow there! I also commented on the short-sightedness of letting the vegetation grow so close to the roads. Those roads would become completely blocked when it snowed! Oh yeah, it doesn't snow there! Over and over my blizzard mindset found fault with island practices, only to finally remember and apply that I WAS on an island! I'm sure the islanders would have been completely amused. I loved the visit, but I don't think I am cut out for island life full time. I would certainly go back for a visit though!

@2011panc of course being born and bred in New England I too am used to all four seasons and the same thoughts occurred to me. i could not imagine living there full time. No.ń

@davidgenebarnes

I hope that all is going well for you and that you have a great Thanksgiving.

Teresa

Hi, Rosemary. Wanted to let you know my husband and I are scheduled for our kidney transplant Monday, Nov 5 in Rochester. We just returned from there after additional testing. His GFR has dropped to 11 per cent so it is time to proceed. I am still the donor so we have been making double arrangements in terms of support people, rooms at the Gift of Life Transplant House, etc. We return to Mayo on Nov 1 for pre surgery tests on Nov 2. Excited to make this happen and grateful for the large Mayo team that makes it possible.

Faune Conner

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.