baltimore update #2
Leslie's notes from yesterday, abridged & edited by Mignon 

     

Once again,  when you seek out the best medical care, you are amazed at the dedication of those whose paths you cross.

Early Wednesday morning, Colleen checked into the endoscopy unit to be prepped for her PEG or percutaneous endoscopic gastronomy. The prep nurse, whom we liked a lot, told Colleen she had to ask her some private questions. “Is there any chance you could be pregnant?” she whispered, which gave Colleen a welcome chuckle. Some of the young nurses explained this to us later, "Around here it's like working at a bar – we have to card everyone."

     

The anesthesiologist came to Colleen's bedside next, described the upcoming surgery, and told Colleen that she and her assistant would be at Col's side during the entire procedure. She informed us that the sedation would be "light," which sounded scary.  

      

Then HE came in -- Dr. Patrick Okolo. (Comment from Mignon:  Do I detect a  swoon? He was a striking African-American man, correct?)  Straightaway, he cracked jokes about New Jersey and about being Catholic. He told Colleen how Dr. Mathai had called him late last night at an hour when the voice on the other end of the line should have been a woman's (although he allowed he's been married for 17 years). He and Col then had a long chat. He told her he was Catholic and added something about having to do a penance for Dr. Mathai. Spontaneously, Col administered a mock blessing. It was a light moment. Okala went on to tell us he'd been born in Dublin and then his father, also a physician, moved the family to London, where Okala grew up and went to Catholic boarding school.  "An all boys school?" Colleen asked him. Of course, he said. Another light moment. He told us that his sister is a nun and that he would have become a priest himself but liked girls too much. Then, getting down to business, so to speak, he went on to say that he is quick and thorough as a surgeon and that he's done hundreds of these procedures before, if not a thousand. We got the strong impression he is the top Johns Hopkins doc for this operation.  

     

He, too, addressed the level of awakeness that Colleen could expect during the surgery, probably more than she would like, he said. When Colleen's eyes began tearing up, he said, "Stop that, now. You don't want to make a brown-skinned man blush, do you?" He put his huge arms and coiled biceps around Col and touched his head to hers. "You most likely will remember nothing afterward.  I run marathons," he said. "And I'll be seeing you running your marathon in New Jersey."

I swear, it was as if God's hands themselves had entered the room.

At this point, I can only say that everyone is drawn to Col.

. . .

While in recovery, Colleen was visited by the kidney specialist, Dr. Derek Fine, and also a Fellow in his department. They informed Colleen about the tests planned for getting a good sense of the condition of her kidneys, one of Pittsburgh's primary concerns before green-lighting her for a lung transplant. They told Colleen they might also want to do a kidney biopsy, which would give the most definitive results. This is the time when it's beneficial to overdo testing, Dr. Fine said. This is life-and-death. What this told us, quite clearly, is that the Johns Hopkins doctors involved in Colleen's case would like to prove, beyond the shadow of a doubt, that her kidneys--along with all the rest--are sufficiently strong enough to undergo lung transplant surgery. They want to declare with confidence to Pittsburgh that she's ready.

. . .

On our way back to Col's room in the "old" part of the hospital, Colleen relates to our two women escorts the story of Henrietta Lacks and the medical theft of her cells years ago at Johns Hopkins in the very same "old" section where Colleen is staying. Instinctively, our voices became hushed as we discussed this obscure crime that had remained hidden for decades. One of the women said she was going to download the book onto her Kindle tomorrow. She's off tomorrow and might just read all day. This gal, kind of big-sized, has now become Col’s friend and defender. Don’t let anyone mess with Col or she’ll take care of them, she said. It was something.

     

Dr. Mathai stopped in close to four o'clock in the afternoon to say hello. He asked about Col's experience with the anesthesia during the morning surgery. He asked about her pain level on a scale of 1 to 10. She said 6.  To me she looked an 8 for sure. He stayed on for a while and talked about things medical and otherwise. He told Colleen that he and Dr. McDyer, at Pittsburgh, grew up together in Cherry Hill. Colleen was able to tell Dr. Mathai that she is scared. He said he would be more concerned if she wasn't scared. They talked some more about the realities of lung transplants--decidedly more complex than other organ transplants--and the expected and unexpected challenges involved, as well as the possible joy of breathing and living more fully again. 

Colleen asked Mathai about the "small window" that Pittsburgh concluded she has remaining within which to get new lungs. He said, "It's a window, not a time limit. But you are very sick. We don't want to mess around. We want to be aggressive, to get you tuned up, to get Pittsburgh to say Yes."

Somehow we got to talking about his bow tie for a moment and then Colleen said to him, "Thanks for taking me on."  He said, "I don’t usually do this. But I will be here with you."

. . .


Colleen tells me she's proactively asking for pain medication, which is unlike her. She's addressing her level of pain because she wants to be able to get up and walk a few steps every hour. Now, there's our champion.