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Posts (40)

Jun 24, 2019 · It's not all about the MELD Score in Transplants

@jolinda I wasn't clear – I had a liver transplant (still have my original kidneys) and on post transplant day 5 my kidney function plummeted causing concern, a kidney consult and a week more in the hospital. My eGFR went down to the low 20's and they indicated that if it went lower I would need dialysis until they improved. Avoided that, but even now my eGFR is only in the mid-40's ar best.

Under the misery loves company umbrella, I feel a bit better hearing that so many others have experienced hair loss. It only started a few weeks ago – seeing strands of hair on my pillow after sleeping was scary.

Another symptom I've had has been hot flashes. I am 58 and post-menopausal having never had hot flashes before. Seems odd but I'll live, although as an Arizonan in summer I don't need to feel any hotter!

Jun 24, 2019 · It's not all about the MELD Score in Transplants

I'm approaching my 6 month transplant anniversary (6/28) and am physically doing well. My post surgery kidney issues are still problematic and having some side effects from the meds – losing hair, some tremors and insomnia. All of those are pretty minor in the scope of things. I will be stopping the Valcyte and Bactrim on Friday and we'll see how my body responds.

Jun 23, 2019 · It's not all about the MELD Score in Transplants

If there is a condition in your liver that is fixable then a lower MELD score is possible and desired if changes can be made. HEP-C, drug, alcohol and diet (choices) are the most common ones. The HEP-C medicines have made great strides in "curing" HEP-C, which I got from the transplanted liver.

Jun 22, 2019 · It's not all about the MELD Score in Transplants

@johnshaw Congrats on your improving health. The journey is hard and it sounds like you are handling it well.

May 31, 2019 · Applying for Disability in MAC & Bronchiectasis

My transplant was 12/28 at Mayo/Phoenix.

May 30, 2019 · Applying for Disability in MAC & Bronchiectasis

Glad to hear that you got approved. Mine took about a year.

May 1, 2019 · It's not all about the MELD Score in Transplants

@johnshaw – My liver disease was originally diagnosed at UPenn, the hepatologist was Karen Krok (now at Penn State Health.) I lived in Central NJ at the time and was very pleased with the treatment. I moved to Tucson in 2011.

Mar 2, 2019 · Post Liver transplant story in Transplants

What do I wish I had known ahead of time?
-While I was in the hospital, they weighed me each day and I couldn't believe that I was gaining weight (up 15 lbs from when I was admitted), especially as I was eating very little. I probably spent way too much time worrying about it instead of resting. The nurses tried to reassure me that it was water and would go away, which of course it did.
-I never realized the connection between the liver and kidney – that I could have kidney problems post surgery. When my GFR went to 20 they were talking about the possibility of dialysis but it did start moving back up. It's still low and I am concerned but they are monitoring it.
-We were under the impression that once released from the hospital we would need to be in the area for another 4-6 weeks. Turned out including the hospital stay, we were away from our Tucson home for 1-month. Don't get me wrong, I was thrilled to get back home and I am glad we chose to stay at the Residence Inn on the Mayo campus. If we had done a short-term apartment rental, we would have paid for at least a 2-month stay and paid out more money – the hotel was on a day-by-day basis.