Greetings from London!
I’ve been remiss in not posting…it’s not for lack of things to say, but rather I was doing an impressive headless chicken impression in preparing for this trip, and then as we were about to board the flight, the attacks in Paris happened, and posting about myself in light of that felt wrong.
I’m not sure whether I’ve waited a respectful period of time…I hope so.
So to recap the last couple of weeks…
I had the CTA scan, and after some shenanigans, managed to get the disc up to Dr. Desai. The initial report (from the radiologist at the center that did the scan) said I had a large clot in my left ventricle. But when Dr. Desai looked at it—and had the head of cardiac CT at Brigham and Women’s review it—they weren’t convinced that there’s a clot. This—a lack of clarity in the scan—was always a risk because the CTA takes pictures between heartbeats, and my heart rate is fast.
Dr. Desai explained that given that they’re not sure there’s a clot, he didn’t want to put me on a blood thinner, because that drug has downsides. He said he’s rather wait a bit so we can see how my heart is doing on the current drug regimen, and we’ll probably need to revisit having the heart cath.
The best case at this point is that my ejection fraction improves. From what I understand, that isn’t super likely. Next-best is that my ejection fraction stays the same, which means we’d have to look at the implanted defibrillator in the near term, but might be able to delay getting on the transplant list for a while. Worst-case is that my ejection fraction has gotten worse.
But Dr. Desai was happy for me to make this trip to London (which we’d planned back in the summer before all hell broke loose; we’re cat sitting a couple of the most adorable felines on the planet!), so here we are.
It’s hard for me to describe how I’m doing because it changes day to day, and sometimes hour to hour. Overall—and I’m doing my best to concentrate on this—I feel approximately 6 million times better than I did 6 weeks ago. Which is great. At the same time, My New Reality is quite different from My Old Reality.
If I walk to far or too quickly or walk up a flight of stairs longer than about 15 steps, I get some wicked pain in my heart. Pressure changes (on planes, yes, but also on the tube when it goes further underground or back up) cause a truly strange, unsettling sensation.
I have to be super careful about sodium consumption, which is harder than I anticipated. I don’t like salt—never add it to food—but it turns out that some of my favorite foods (ham and bacon, for example) have a ton of salt.
Sometimes my brain takes a break for (literally) a second or two. I’ll be talking and suddenly the words just aren’t there. This passes quickly, but it’s weird. It’s a function of blood moving around my body—including to my brain—less reliably.
If I sit down for a while, sometimes the world goes all wobbly when I stand up. A couple of days ago I came close to passing out, but didn’t. This is just a function of my (very) low blood pressure, and it’s a side effect of carvedilol, the beta-blocker I’m taking.
When I get cold, it takes me ages to warm back up. Turns out it’s good I live in Florida; I’ve never been a big fan of winter—I like snow but hate wind—but now, I really can’t take it.
When we get back next week, I have to tackle the health insurance (or lack thereof) situation. I’ll have insurance on January 1, although it’s expensive and won’t cover all my care (by a long way). So I need to make sure that I find the best option available to me; these options are limited because the governor of Florida, affectionately known as Voldemort, refused to have a state insurance exchange. This means the only options I have are those that are federally mandated. Thankfully, I have confirmed with both the companies that offer policies that they will sell me insurance despite my preexisting conditions. (For the record, this was not the case prior to the Affordable Care Act.)
So the trick is to find the best plan given my current situation and likely developments. It’s complicated by the fact that we’re still waiting for information (side note: waiting really is the hardest part, and drives me bonkers), but with help, I’m confident in being able to get it sorted.
I’m still incredibly overwhelmed and tremendously grateful for the help I’ve received from friends and strangers alike. I’m still reeling from the awesome (in both the literal and vernacular senses) auction that Jon and Ruth organized at Murder and Mayhem in Milwaukee. Even more amazing, they had enough donations to do another one online.
I had a lovely time yesterday having lunch with a dear friend who is also a gifted storyteller. About halfway through, it occurred to me that as much as my situation is still so frustrating that it brings me to tears on occasion, my life is—as literally as possible—amazing.
And I am immensely grateful for that.