THURSDAY - DAY 14

Ron has been re-admitted to the hospital. Ron began having acute stomach pain at 4:00am this morning; doctor appointment at 10:00am, they decided his anti-rejection medication is 'toxic' to his body (we knew that days ago)...they changed his medication. Because of the pain, the wanted to re-admit him for a CT scan, because the hospital was on diversion lockdown, we were taken from the transplant clinic, he was wheeled to the ER and admitted from there.....hopefully this will be a 24 hour admission; his liver blood tests look good, the doctor doesn't think he has a bile leak but they need to make sure. I'll know more tomorrow.

We've not been happy with the post transplant care so far - but today, the team really stepped up - I feel like there is a missing puzzle piece to the post transplant puzzle.  There are clinicians, PAs, doctors, pharmacists, coordinators, surgeons...........but not emotional support.

The doctor told us today that we have a touch of PTSD, after living in the pre-transplant cocoon of dealing with the idea of final days, the liver transplant doesn't 'feel' real - and THEY ARE SO RIGHT.  Ron has told me for days, that he feels worse than he did before the transplant, and when you're lived with the knowledge that death is so near, it's difficult to break free of those feelings.......the 'highs' of newly transplanted - have left us and hopefully with the change in his anti-rejection medication, we'll feel more like Ron's on the road to a new life again.  Lately it's been like living through a private hell - Ron is not himself - the coordinator told us that once all this is over with - Ron will probably never remember these bad days.........I can tell you what.....I'll never forget them.