This and That and Talk - My Transplant

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.

@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?

Rosemary:

Our stories are remarkably similar, though my liver/kidney disease was caused by ETOH and family history.

I too was transplanted after being admitted in my last legs and bouncing back and forth twixt status one and seven. I lucked out at literally the last hour.
I’ve only met—virtually—two other SLK transplants. I think fewer than 8K of us exist or existed.
I’m an ambassador for Donate Life. I do visit Mayo annually.
Thanks for your volunteer work! Gottenyu.

@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?
I used to volunteer as an ambassador with Donate Life, but when the local office and activities moved out of my area, I found it too difficult to remain active. That is when I decided to focus my volunteering on Connect in the transplant discussion.

April is Donate Life Month.
https://connect.mayoclinic.org/discussion/transplant-events/?commentsorder=newest#chv4-comment-stream-header
What are some events that will be happening near you?

@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?
I used to volunteer as an ambassador with Donate Life, but when the local office and activities moved out of my area, I found it too difficult to remain active. That is when I decided to focus my volunteering on Connect in the transplant discussion.

April is Donate Life Month.
https://connect.mayoclinic.org/discussion/transplant-events/?commentsorder=newest#chv4-comment-stream-header
What are some events that will be happening near you?

I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right time to save my life.

I volunteer to give back, of course. Donate Life has a hard time here Due to distances between the communities and the COVID-19 restrictions, which are still in place of course for immunosuppressed patients.

I have attached a picture of us at one of our recent events, As well as a picture of me and two of my own wonder dogs.

I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right time to save my life.

I volunteer to give back, of course. Donate Life has a hard time here Due to distances between the communities and the COVID-19 restrictions, which are still in place of course for immunosuppressed patients.

I have attached a picture of us at one of our recent events, As well as a picture of me and two of my own wonder dogs.

And please excuse the random capitalization, a product of damnyouautocorrect. As a retired English professor I’m compelled to fix these.

Hi Everyone! I celebrated my first year transplantaversary yesterday (April 24th-heart/double lung) with a Thank You party for family and friends that helped me and my family with the transplant journey, especially when I was hospitalized. It was a decent spring day in the Midwest so we could be outside too. My husband surprised me with this cake he commissioned from a local bakery. Everyone was amazed at the detail and taste was great too. Apparently you can google anything these days and take the pic to a bakery!