2:30 pm holding/recovery room Cardiac Cath unit

Nurse Tom just helped Colleen out of bed for the first time since the cath and he's walking her around, checking to make sure the incision has closed properly (an artery and a vein were exposed). Not wanting to use the bedpan, Colleen has been "holding it." Oh, they just got back. She used the bathroom. And Nurse Tom just gave her the go-ahead to leave.

I am so ready to go home, home as in Family House. I'll wheel Col down to the lobby, walk back to Family House to get the car, and then drive back to Presby to pick up the "patient."

11:00 am Colleen's bedside Cardiac Cath Holding Room 

Awake but eyes closed, Col is tucked under three hospital-warmed blankets. They want her lying prone for 2-1/2 more hours and then...and then...and then...we are done!

I'm sitting right next to her doing my thing, and hoping she will sleep.

The doctor who did the cath, Dr. Scolari, a woman physician, stopped by a few minutes ago with no unexpected or bad news whatsoever. Whew.

We leave for Jersey in the morning.

In the meantime, my intention is to start typing up my handwritten notes for the week.

FROM COLLEEN
(typed by Mignon at Colleen's recovery bedside)

In recovery. Worst is over. All done.

9:30 am day 5 friday cardiac cath family waiting room

This trio of hospitals runs like a finely calibrated clock, or an enormous Santa's workshop where each and every elf knows her and his job and each and every visitor is treated as a five-star guest. At least this has been true for us, perhaps because of the intricate tapestry of the week-long lung transplant evaluation which, we've come to understand, is pretty much a constant here at UPMC. 

The red light told me that Colleen was fully prepped for her cath. Simultaneously I received a personal call on the waiting room phone telling me I could walk down to the "Holding Room" to see her. (See how they go to any lengths?) And they will call me again on that same phone when the procedure is over so I can sit with Col for the hour or two or three that she is resting and recovering. 

In the Holding Room, Colleen was lying in a hospital gown in one of those curtained hospital cubicles. She seemed at ease in the midst of speaking with one of the assisting doctors who was describing the procedure which will entail the use of two wires with which they will explore both Col's right and left heart. (She's had one heart cath before, but only of the right heart.) He told us, when I asked, that the wires are about the thickness of spaghetti. Colleen said, "Angel hair pasta?" "Not quite that thin," he said.

So Colleen is undergoing the cath as I type, or perhaps in the taking-out-the-tubes end phase of the procedure. I'm undergoing the torturous, chronic sound of television, flat screens mounted on the wall in all waiting rooms thus far. Not only is television ubiquitous, but right at this moment it's daytime TV--  inanely shrill game and talk shows which twist my insides to screaming. Would that I could partake of Col's twilight zone.

Purple! 

The line for PUHCL-2013-499 on the monitor has just turned purple and reads "To Holding (post-op)." It's over! The next ring of the telephone might be Nurse Tom giving me the green light to come back to recovery. (Many others are sitting here waiting for their calls as well. We've been taking turns answering.)

6:25 am Day 5 Cardiac Cath Lab waiting room 3rd floor Presby
Alarms work? Check. Arive at hospital on time? Check--we're fifteen minutes early, in fact. And that includes driving from Thackeray to Presby, dropping Colleen off in the Main Lobby where she gets her chair and oxygen for the day, driving the car back to Thackeray, my walking back to Presby (36 degrees outside; Mom's coat and my gloves keep me warm) and, finally, wheeling up here to the Heart Cath Lab. In other words, masterful focus. Mom, you would be proud of us. We've been the two blonde sprites dancing through the halls, up and down the elevators, and into waiting rooms, doctor's offices, labs, and Presby's 11th floor cafeteria, although we pretty much pack our own food for the day.

7 am Col was just wheeled to prep by a nerdy-cute, thirtyish, comic, possibly gay, intake guy. "Are you conjoined twins?" he asked us. "Is there anything we could do for you today, Mignon? A colonoscopy perhaps?" 

He laid out how things will unfold. "You're going to be separated now for forty-five minutes," he said. "Oh, no!" I said back. He pointed me toward the Family Waiting Room and directed me to watch for Colleen's code number PUHCL-2013-499 to highlight red on the monitor, which is mounted on the wall to my left as I type. Next to Col's anonymous patient code it reads "In Holding (pre-op) in yellow. When it turns red, I'm supposed to walk down the hall to where they've taken her.

Col's demeanor this morning, in anticipation of the cath, is subdued but okay. As a precaution, the lab asks all heart cath patients to bring an overnight bag with them--just in case there's a complication. Our thinking is that, since her test is among the day's first, the likelihood of her having to spend the night is slim. As far as the overnight bag goes, Colleen, with remarkable simplicity, put but a tiny pair of panties and her toothbrushing stuff into the light tote she's had with her all week. Others arrived carrying  separate, seemingly full, duffle-like bags.

Still yellow.

You have read my report of the presence of angels here. Today's first, upon arrival at Presby at not quite 6:00 am: Colleen is exiting the passenger side of the car where I'm already at the ready with the wheelchair. "I'll walk," she says to me. That means, using her portable oxygen tank, she'll walk not ride the 20 yards or so to the Main Lobby Reception Desk. Just then a frail, rough-living man with a cigarette hanging from his mouth appears behind us from out of nowhere and says softly, "Can I help you?" By then, I'm turning around to heft the chair back into the trunk. "Oh, no, turns out we're not going to use it," I say to him. "I would help you anyway," he says.

Red.

2030 hours room 603 university place family house 116 thackeray av pittsburgh
Tonight, Colleen and I have set not 2 but 3 (!) alarm clocks. This because both of our alarms failed to wake us up this morning (mine too soft, Colleen's too). We had planned to get up at 5:45 for a 7:30 first appointment. Both of us go crazy if we have to rush in the morning, so we felt we'd given ourselves a prudent amount of time to dress, eat breakfast, and pack up for Day 4 at the hospital. We both fell asleep easily last night--crashed is more like it. Pre-dawn, I stirred, calm in the knowledge the dual alarms had yet to go off. Nonetheless, I took a peak at my bedside clock. WHAT?!!? "Col!" I said. Her eyes pop open. "It's five of seven!" Her eyes pop open even wider. She looked about five years old.

We sprung into action--the tortoise and the hare. I, the hare, packed up pen and paper, water for both of us, elevatored up to the kitchen to grab our cold oj, and readied the wheelchair. Col, the tortoise, packed up pen and paper and medical records, filled her oxygen tank, and got in the chair tout suite. Of course, we were out of our pj's by then, a well-worn folded copy of the week's schedule in my jeans pocket, Colleen's copy in her tote. (Neither of us has lost this schedule; it's our bible here.)  So: Wheelchair to the down elevator, wheel to Col's Camry in-house parking lot, stash wheelchair in trunk, 3-minute drive to Falk Hospital during which we dissect The Tortoise and The Hare fable and how unlike the competitive Tortoise and Hare we are. We valet park at Falk (the first time we've indulged in this luxury), switch out the red for the black hospital wheelchair and oxygen tank, wheel to Radiology on the first floor, and check in at 7:27! On time! 

Just one more Pittsburgh miracle among hundreds since we've been here.

Colleen's heart cath, her last and most challenging test, is tomorrow morning with a check-in time of 6:15!
Thus, our setting 3 alarms. Wake-up time:  5:15! Col can't eat or drink past midnight, so breakfast won't be an issue in the morning. She just snuggled into her two soft blankies and closed her eyes. Here I go too.

PS on our Valet Park:  We finished at the hospital at 5 pm today. When we handed the valet parking attendant a twenty-dollar bill to pay, he said "Oh, our cashier is shut down for the day. So no charge--just this one time (wink)."  As he set out to get the car, I quietly said to him, "We've been here for 4 days and have run into angel and after angel." "Don't you know that God is everywhere?" he said with a big smile. "Angels keep turning up and helping us just when we need it," I continued. "That's what we're here for," he said still smiling. Colleen gave him a $10 tip. "God told us to give that to you," she said. One final smile. When he said, "That's what we're here for," to help, it was implicit, of course, that he meant that's what we're all here for.

PS: The University of Pittsburgh Medical Center (UPMC), the University of Pittsburgh Medical School, and the University of Pittsburgh cohabit the same hillside here in the Oakland section of Pittsburgh. The buildings kind of tumble into one another. 

UPMC has three hospitals--Presbyterian Hospital (Presby), Falk Hospital, and Montefiore Hospital-- all cobbled together by tunnels and long hallways, and extremely confusing floor identifiers because of the steep hill upon which they sit. For instance, Falk G (ground floor) = Presby 3 (3rd floor) and so on. Because of the steep slope upon which the hospitals are built, the corridors Colleen and I have been traversing have uphills and downhills. All I can tell you is that wheelchair drivers like me have to be pretty darn strong, first to climb and second to assure slow, rather than runaway, descents.

Good-night

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.