In the Middle
Sorry I’ve been so quiet.
I've been awaiting the return of my writing muse and she seems to be on mid-season hiatus, not unlike "Game of Thrones." But many of you have reached out for an update, so I'm just gonna blurt one out as I admittedly left us all in an anxious moment when I last wrote in this journal.
I will start by saying that in a lifetime lived incredibly high-strung, I'm not sure I've ever been tuned as tightly as I was on the ferry crossing last Monday morning. It felt like if I was a guitar and you even attempted to strum me, I would have shattered into a million pieces (and Derek was clearly in no better shape). This appointment had been 3 weeks and many, many feverish Google searches in the making and we had both turned it into a bit of a talisman of sorts. Like, okay, once we meet the team and get out of this bizarre No Man's Land that we've been in, all will be right with the world again. Did I think of Charon the Ferryman and payments due and the river Styx? Of course I did. Drama has never been in short supply in this particular brain, and the Greekier the better.
You should know we were very impressed by the team. Our day with them ran from 8:30 am to 2:00 pm and included an almost incomprehensible draw of 17 vials of blood, a chest X-ray, a social worker interview, an exam and discussion with the transplant cardiologist we were assigned, a fitting for a Holter monitor and a discussion with the transplant team nurse on next steps, legal hoops we need to jump through, expectations, and a fairly decent dive into "the process," complete with extensive homework assignment. Which, if you know me at all, you know I'm thrilled about.
Wait, there's a workbook? SIGN ME UP.
To a person, the team members were highly efficient, professional and warm-- from the phlebotomist who against all odds (and using only two veins) got blood from a proverbial stone (with my pulse and blood pressure it is insanely difficult to get blood from my arms right now); to the radiologist tech who took care of everything so quickly that it literally took me more time to get undressed/dressed than it did to get into the room and take several glamour shots of the old ticker in all its glory; to the social worker who, while clearly assessing our mental, emotional and social fitness, remained somehow both detached and friendly; to Dr. Masri who spent a full TWO HOURS with us, getting my history, answering our questions and providing a tremendous amount of information about what we know about my heart and my chances; to the tech who fitted me with a 48-hour monitor who explained all of the why and the how while still managing to keep a very interesting discussion of "Black Mirror" going; to the nurse who, I'm fairly certain, got a pretty good kick out of our gallows humor.
Case in point, and honestly, I have had the hardest time deciding whether or not I was going to tell you about this because it's kind of embarrassing... but I mean, we're all aware that my body is about to become a scientific wonderland, so what's a little humor between friends? So Sue (the nurse) is explaining to us that we basically need to test every organ and system in my body to make sure that, aside from the dramatically sub-par heart, I am otherwise in good health. Because, as it turns out, they apparently don't give hearts to people who are not healthy. This means that I need to take care of some of the deferred maintenance that a 51-year old woman like myself has simply been putting off: Pap smear, mammogram, colonoscopy, etc. She explains that she can set up these tests for me if I don't already have a gynecologist, gastroenterologist or any other kind of ologist that I work with.
Well as a veteran of the endometrial wars, I'm all set with the lady parts doctor, but no such luck with any other kind of doctor, so I admit that yes, I could use her help with setting up the tests.
As someone who has never met me, she naively asks "Is there anywhere in particular you'd like to have your colonscopy?"
And in all seriousness, I replied "Well, I'd prefer to not have it in my butt."
The 3 of us erupted into belly laughter and poor Derek was horrified, as is his fashion as the significant other of someone who occasionally says absolutely ridiculous things. He later told me that his internal monologue heard Sue's question and was saying "Oh no... Oh NO, she's really gonna say it." He's clearly aware that, regardless of any sense of decorum, if you lob a softball at me like that, I'm gonna swing for the fence. Enabling me is part of his charm.
Sue also explained that she had already begun financial negotiations with my health insurance company and we learned something incredibly sad: In the United States, if you do not have health insurance, you cannot be given a new heart, regardless of your need or circumstance. I have been avoiding politics like crazy for my own cardiac health (I can literally feel my heartbeats going wonky when I'm upset about anything), but friends and neighbors placing more value on the lives of the literal Haves than the Have-nots is shameful. And quite frankly, that has nothing to do with politics.
We learned that there are 4 "Listing" statuses that transplant patients fall under, according to the United Network for Organ Sharing (the governing body that ultimately controls who is listed and in what order organs are given to those waiting):
UNOS Status 1A
The patient is in the hospital needing mechanical support or IV meds
UNOS Status 1B
The patient is at home with mechanical support or IV meds
UNOS Status 2
The patient is at home on oral medications, does not have IV infusion or heart pump
UNOS Status 7
Inactive due to insurance or caregiver issues, active infection, substance abuse, BMI too low (<18) or too high (>38)
I am considered Status 2. Patients are given hearts in accordance with their ranking (and of course only if other matching criteria are met). The short-term goal is to keep me in Status 2 for as long possible because once my heart is out and replaced, there really is a shelf life (median of 15 years) that we'd rather not focus on right now. I will spare you my thoughts on being told that living in an incapacitated and disabled way is preferable to living a full and healthy, albeit shortened life. It's statistically greatly shortened either way and we all know it, anecdotal tales aside. I'm guessing there will be an angry post about this at some point, if you'd like to place your bets now.
So basically, if there is a heart and both a 1A (or 1B) person and I are considered a good match, the 1A or 1B person will be given priority assignment. Oh, and when you're called for a heart, you have to get there within 3 hours-- which will be very interesting for me based on ferry schedules and will no doubt make for one spectacular #ferrytales Facebook post, because none of us can even begin to pretend I won't do it. I've teased Derek for years about how his insane driving has shortened my life, so it's rather poetic that it will now literally come into play to lengthen it.
We also learned that by law I must have 24/7 care for a full 3 months post-surgery. So to those of you who have so very graciously offered to help-- I promise we'll tap you to head into the ring at some point. There's simply no other way that we can get through this.
We left there feeling SO much better. Knowledge is power and the unknown is terrifying and while there is still a LOT of unknown and so much that we cannot control, we are in the system. We are in the middle of the process. And we are stepping ever closer to being presented to the Selection Committee and being placed on the list.
One thing is for certain: I'm going to nail the talent competition.