Today, Patty went to Central DuPage Hospital to have her PICC line replaced. This is the IV line through which Patty receives the essential drug milrinone. Under normal circumstances, this is a simple 15- to 30-minute procedure. Of course, Patty is about everything but normal, so the process took more than an hour, which of course made me fret and pace. When Patty arrived back in the room, looking perky and healthy, I remember feeling surprised -- even though the procedure was no great event, at least in the scheme of things.
It turns out that the PICC replacement was hindered by the fact the vein in which the line was situated had stenosed greatly (that is, scar tissue had formed around the old line.) Based on the research I could find online, this occurs in only seven percent of people in whom PICC lines are implanted. Am I the only one who thinks Patty would have had this problem even if it was against 1-in-1,000 odds? Ultimately, though, she came through the process with no major problems, although her arm is pretty sore.
We had a conversation with one member of the heart transplant team today about Patty's future, and this time around it sounded much like a friend position being presented than an official stance. We are hoping to hear more soon from one or more of Patty's cardiologists. We think doctors are starting to more seriously consider the impact lupus may be having on Patty's condition. Part of the next phase of the necessarily ever-shifting plan is to involve the rheumatology team in a more meaningful way in understanding what role lupus might be playing in making everything all the more a nightmare.
Doctors are also considering more extreme interventions to attempt to reduce Patty's antibodies -- including total body irradiation and administration of a more potent chemotherapy drug (retuximab.) Of course, as much as I keep wanting to find any new reasons for optimism, all of these things make me worry even more about Patty's day-to-day ability to cope. I keep shaking my head that every situation seems to be more complicated than the norm, and keep hoping I'll never fail Patty when she needs me to be strong.
The person with whom we spoke today recognized our worries about Patty's quality of life, and said she understood why we might be wanting to challenge doctors about how far we can go with these interventions. As we shared with her, we don't want to be fatalistic, but we also don't want to be, in the words of one of Patty's doctors, "stupidly optimistic." In case you hadn't noticed, I'm in one of those glass half empty moods tonight, although I had a chat with Neil as I was working on this and that put me back on the road toward laughing-at-adversity mode on Patty's behalf.
Tomorrow, we'll strive for a more sunny disposition.