In limbo?

A couple of weeks ago, I received a letter from my transplanting hospital (UPMC) stating that my Doctor has left the Transplant team. He just so happened to be the head of the team, but it seems to me that I have been left in sort of a patient limbo.

The last I saw of my saw-bones and coordinator I was to start getting regular (how regular I am not sure) ultrasounds to keep an eye on my hepatic artery, and whether or not the flow was decreasing or staying relatively even. I would say normal, but that would infer that it isn’t still at least somewhat reduced – which it is.

Any way, I haven’t heard nary a peep from anyone out west in Pittsburgh since my last visit a couple months ago – so i guess it’s time to pick up the phone and give a shout out…. I don’t really blame them if there is a bit of turmoil going on, I know about turmoil in the wake of senior staff leaving – but it is a bit…. disheartening? No, that’s not it… just leaves me in an odd spot; even if it is only a perceived odd spot.

Undiagnosed cancer is spread to transplant recipients

I started to write this post and stopped three times now. I just don’t know what to say. The whole story is a collection of tragic endings on almost all fronts.

I can’t imagine how this could have ended any better, or different – but I just have to say that my heart goes out to all of the family members; and I pray this never happens again….. This really hit me pretty hard. Partly because I cannot even begin to fathom life without either of my boys. In part also because this is one subject that was never discussed, never hinted at, or even came to mind. Not once during my whole process of being sick, getting listed then eventually transplanted.

I would much rather be sharing something more uplifting; a story of amazing success and grace. But stories like this need to be told too. People who are being listed and told they need a transplant of any kind need to know the risks; regardless of how remote. Knowing this would have made little difference in my decision, so I know some could argue, what difference would it make to have known it? Honestly? None.

What I can say: mentally, I was completed unprepared for what lay ahead for me after I returned to the floor from ICU. I had no idea what to expect, and it was horrible for the first week or so. I had only what the doctors were telling to gauge what was happening. They kept telling me I was doing great, but I was in a lot of pain – so I didn’t feel great. Where am I going with all of this? Simple. Had I known (you could argue… duh! what else would you be in after having a liver transplant?) what it was really like afterwards, I would have been more mentally fortified to deal with it.

Which is ultimately what made me decide to write this blog.