Bill here. 8 years post SLK transplant, with a long ICU stay and even longer rehab stay. I couldn’t walk, and using my hands was difficult, neuropathies in my feet, had to get swallowing lessons, delirium, etc. I had no memory of being admitted to the hospital, the ICU stay, or a week or so after the surgery. I learned to move about using a wheelchair and slideboard, and struggled with pain, neuropathies, insomnia, etc. Some meds helped, but I was on so many... anyhow, I’ve made peace with my amnesia since I partially reconstructed the months I lost from notes and witness accounts.
I serendipitously read about post-ICU syndrome, and realized that had been part of the problem in my recovery. Nobody had mentioned it as a possibility. I read that in Europe they keep a diary by your bed and any time someone did something to you, for you, with you, they wrote in the diary. Then, upon discharge, they give you the diary so that, along with the official records and witness accounts, you have a day-to-day account of what occurred. I wish I’d had that.
Enough for now. I should say that my experience was not typical of post transplant patients. I was just unlucky enough to be moribund on admission and then had all of the complications in the book. Without Mayo Clinic, I might not be writing this today. So I’m grateful; I just wish that post-critical illness syndromes were more recognized, along with physical healing. Perhaps they are now.
It’s been two years since I was hospitalized for anything. I still have to be careful: the COVID19 pandemic has been rough.
Hopefully this little story helps someone out there in the ether. Gottenyu.