Just another manic Monday

Today was a long day for us. Started off with getting up at 6:30. Ouch. Ended at 4pm. Ouch.
Our first appt was with the Transplant Pulmonologist. Wow, what a way to start off the evaluation week. This Dr. we liked, she didn't sugar coat anything. But shit, it was depressing.
We discussed his chances at getting transplanted here. Gave us examples of patients with medical histories similar to Lee. One with a good outcome and one with a bad outcome.
Here's the bottom line for Lee, with his esophagus problem, transplantation can be very dangerous. Could develop lots of infections and lung rejections. Plus there is the chance he would have a feeding tube for the rest of his life. Lee will just not accept that. One thing is for sure, he would be on a feeding tube for at least 6 months after the transplant.
This hospital, like many others, is about quality of life. For patients with PF like Lee, transplantation is a life saving procedure. But would his quality if life be good enough to chance such a surgery?
We left that meeting with a great deal to think about. And this is just day one.
Our 2nd appt was with the Social Worker. It's her job to get to know the patient and the primary caregiver. She suggested I get a back up caregiver in case I get sick or need to return home for any reason. My father has agreed to step in for me should the need arise. And it will. He has the financial means to travel to Pittsburgh, the availabilty and is tenacious enough to handle the situation. Thanks Dad.
Our Social Worker said this, "it takes a village to get a transplant." And she's not kidding. The transplant team, (which is about 15-20 people) the caregivers, our support system, and let's not forget the donor.
We also discussed the financial burden that transplantation causes. No figures were given, we
meet the finance/insurance person tomorrow. But Oh god. I can't tell you how much this part
hurts. We were told we would be here a minimum of 3 months. B/c of Lee's esophagus dismotility, it could be 6 months or longer. All follow up appts. would be here too. So we'd have bills here and at home. Ugh.
The last big appt we had was a 2 hour orientation. 18 other patients and their caregivers were
present. One cool thing we learned, that a new lung transplant surgery procedure is done at UPMC. They no longer open up the chest like a clam shell. Instead they make a small incision for removing the old and inserting the new lung. The lungs must first be deflated to do so.
And no ribs get broken. Now that's awesome.
The day ended with Lee giving many many vials of blood, to an actual nurse not a vampire.
We decided we deserved a fab asian dinner and then homemade ice cream, after what was an emotionally exhausting day.