10:15 am Day 3 UPMC Presby radiology
Last night, Tuesday night, as Colleen was resting and reading on her twin bed, I put my head on the pillow and fell asleep for 11 1/2 hours...this might give you an indication of the level of intensity thus far (and Colleen and I both fell asleep in our day clothes, too tired to change into pajamas)...

This morning, Colleen's appointments didn't start until 9:45, so we were like two kids last night when we realized we could sleep in this morning...the previous two mornings we've used our two alarm clocks to get up at 6:00 and 6:30...Neither Col nor I slept much at all the first night (Sunday)...not because of particularly disturbing thoughts but because of the adrenaline of expectation, we concluded...Monday night we slept a little better...last night we got the best sleep so far...My wheelchair skills are also on an upward curve...I brought two heavy shoulder bags with me on Monday, for instance--with our water, food, evaluation materials, notebooks, etc--not realizing how unwieldy these large bags would be, I discovered, as one's shoulders slope downward when you lean forward to grasp the wheelchair's handlebars... Tuesday, down to one bag, which helped a lot...Note: if there's a next time, bring a backpack...

Colleen and I both think this place is astonishingly wonderful...each and every person we've met--at Family House, the shuttle bus driver, the hospital nurses and techs, the doctors we've met, including the surgeons--have been warm, kind, unhurried, and thoughtful, even anticipating needs we may not have known we had. A glitch arises or we get lost, which happens over and over in this giant medical legoland on a hill, and presto, a person suddenly appears and steers us in the right direction, even the chief hospital electrician who we came across on Day 1 when we lost our bearings on the labrynthine path from Presby to Falk Hospital. While escorting us partway, he talked about the particular responsibility he feels for ensuring an unbroken current of electricity to the hospital's life-and-death machines. He's just one of the "angels" who keep magically appearing just when we need them. 

...

Several hours have passed with multiple interruptions so I had to stop typing. But Colleen is doing her last test of the day now, the second worst of the week, which involves a barium swallow. (The worst test comes Friday: a full heart catheterization.) I can tell you Col has not been looking forward to the barium swallow.

But she and I are both looking forward to finishing up at the hospital early today. On Monday even the hallways of Dr. McDyer's offices were dark after our appointment with him, and it was dark outside. Yesterday was jam-packed. We met with Dr. Shimagura, who will be Colleen's surgeon if she has the transplant. We both liked him a lot. We met the fellow (female doctor) who would be operating with him and liked her a lot too. (By the way, I think everyone we're meeting is also liking us, and these meetings have been noticeably unrushed and relaxed. We talk, they ask questions, we ask questions, bits of things we didn't know emerge. We walk in and, for the most part, whomever we're meeting with already knows Colleen's history and current condition.) 

...

More hours have passed. Colleen said the barium swallow wasn't that bad (Whew!). When we left the hospital around 3:30, snow flurries were falling. Our routine has become this: When day is done at the hospital, I walk "home" and get the car--about 7 minutes away--and drive back to the Presby's Main Lobby to pick up Colleen. This plan is way faster than taking the shuttle.

In spite of the snow, we drove to Trader Joe's, three miles away, and got some "green" provisions, fruit, oj, and ingredients for smoothies. It was good to get "out," ie, to see something beyond the solid square blocks of hospital, in spite of the satisfaction of knowing these blocks well now.

It was snowing harder and growing darker on the way back to University Place (the name of our particular Family House). Colleen wanted to have a cup of tea together in the "drawing room" on the 8th Floor and I scored us some day-old but very good blueberry scones from the communal kitchen (also on the 8th Floor). We're regulars now and have already said goodbye to a few residents who were here when we arrived on Sunday.

It's going on 8:00 now. Colleen and I have both managed to put on pajamas. She's on her computer too. With some chagrin, we've set our alarms for 5:45 (!) in order for Colleen to make her first morning test at 7:30. We then have meetings scheduled with a Nutritionist, Social Services (Psychology), and Rheumatology. Major blood testing sometime in the afternoon, when we can fit it in. 

By the way, Day 2 consisted of meetings with transplant surgeon Dr. Shigamura, mentioned earlier; financial people; Cardiology (Dr. David Ishizawar); Pulmonology (Dr. Amy Rivera); and  Gastrointerology (Dr. Klaus Bielefeldt, a rail-thin, sprite-like individual with an appealing sense of humor and heavy German accent.)

On Day 1, Colleen met and was permanently assigned to one of the Lung Transplant Program's 3 coordinators, Lisa Carozzo, an RN who will be Col's main contact for the duration. She is the person who will call Colleen to tell her whether or not she has been accepted as a candidate for a lung transplant. If Colleen is put on the transplant list, Lisa will remain her primary contact for the duration, pre- and post-transplant.

NOTE:  The Lung Transplant Selection Committee will meet NEXT TUESDAY. Dr. McDyer will present Colleen's case. Every aspect of her health--lungs, heart, kidneys, pulmonary artery, esophagus, body weight, and state of mind will be reviewed by the entire committee and a decision will be made. 

NEXT WEDNESDAY OR THURSDAY, Lisa, Col's coordinator, will call her with the committee's decision. 

Col will hear 1 of 3 messages from Lisa in that call:
1. You have been accepted as a candidate for lung transplant.
2. You are considered a likely candidate for lung transplant, but a final decision is deferred until the following tests are done, and/or until you've gain X amount of weight, and/or...
3. You are not a candidate for a lung transplant at UPMC.

Deferred acceptances, we heard today, are the most common decisions.

No one here thinks Colleen does not need a new pair of lungs. Dr. McDyer's opinion is that hers will/would be a "high risk" lung transplant. (High risk lung transplants are UPMC's speciality, thank heaven.) The question is whether any of the many variables of Col's condition would preclude a "safe" and successful high risk lung transplant.

My strong impression is that each physician we've met
--each of whom will either be part of the Selection Committe or give their studied opinion to the Committee--each of these doctors are dedicated, will leave no stone unturned in determining the viability of new lungs for Colleen, and will go to any lengths to make the right decision. Even before we arrived here, I had the impression that this is a place that goes to any lengths. Seeing everything here firsthand has only strengthened my confidence.

Signing off.