We got back from Boston yesterday evening. It was, in a word, overwhelming…but I kind of expected it to be. A lot of information, and not a ton of certainty.
If you’d prefer not to read all the details in this (very long!) post–and I wouldn’t blame you a whit for this–you might want to skip to the summary at the end.
Before I try to explain what we learned, I have to say that one thing has been purely and painfully clear to me since we left the cardiac center at Brigham and Women’s (BWH): I have a great life. I’m incredibly lucky. Being confronted with one’s mortality so dramatically kind of pulls this into focus. So no matter what ends up happening in the months and years ahead, I will remain grateful.
On Friday we arrived at the clinic (across the street from the hospital) early, prepared to wait. But they saw us early, so thankfully, we didn’t have to sit around being nervous and anxious. First was the stress test. The woman who did the test was brilliant—nice, smart, clear…she did everything possible to put me at ease. The bulk of the test involved getting hooked up to monitors and having my blood pressure, heart beat, and breathing checked. Then I got on the bike (there was a treadmill, but I was put on the bike). It was uncomfortable (I had a clothespin thingy on my nose and had to breathe into a snorkel kind of contraption that was designed for people with bigger mouths than I have), but I did my best, and the tester woman (whose name, I’m sorry to report, I’ve forgotten) said the results looked about as one would expect given my condition.
I figured that was good news. At least she wasn’t saying, “this is just terrible!” When we talked about it with Dr. Desai, though, he said it was pretty dismal because I’m at 45% of what someone of my age and body shape/size should be.
I can’t say enough good stuff about Dr. Desai. He spent the better part of two hours with us. He was patient and clear, without being the least bit condescending. He balanced our need to have some hope with his need to prepare us for scenarios that can only be described as bad.
He showed us my echocardiogram, which is basically an ultrasound of the heart. It was fascinating, for sure, but I really wish I had been looking at a pretend case for illustrative purposes instead of my actual heart…because it was clear that it’s just not working well, and seeing it in movie form was pretty disconcerting.
One important piece of information from the echo tour was that I have dilated cardiomyopathy, not hypertrophic. This is good news. I’m not sure exactly why, but Dr. Desai was clear that this is definitely good.
So…what’s the plan? Well, it’s kind of complicated.
Dr. Desai adjusted my medications, doubling the amount of Lasix I’m taking (which should help with my shortness of breath) and added valsartan, a type of ACE inhibitor. So that means I’m on three drugs now. So far, I haven’t experienced bad side effects, but I have a list of them to watch out for (like fainting—so they’re hard to miss!).
The hope is that these meds will make me feel better. They are not going to fix my heart (unless the cause is viral, which is unlikely, but is explained below), but it is possible that they could get me to a point where I can live for many years just taking these pills. That’s a best-case scenario, the one we’re not hoping for with all we have.
It’s hard to know how well the meds will work because it’s impossible to know what exactly caused this. Given my family history, chances are good that it is genetic. But I also had a cold that lasted for (literally) two months not long before it showed up, and it could have been caused by this virus (this is not likely, but is possible). It could also be a function of my thyroid disease.
It will take 4-6 months to know whether and how well the meds are working for me.
I also have some specific dietary restrictions. No more than 2500 mg of sodium per day (this isn’t a huge deal for me, but wow…there’s sodium in everydamnthing!) and no more than 2 liters of liquid (this is a bummer, but I’ll manage). Oh, and when I reacted, um, strongly to a “one cup of coffee a day” restriction, Dr. Desai said I could have two (told you he’s a good guy). That’s better than one, but less than the 4-6 I’ve had every day for several decades. These restrictions are permanent, so I might as well get used to them…and I will.
I debated including this next paragraph because when I mentioned it before, I got a ton of messages about it, each of them completely well intentioned and some of them incredibly helpful. But here’s the thing: to keep getting messages about this at this point actually makes it harder. I have to quit smoking, completely and immediately. Not because it has any effect on my current condition—it doesn’t—but because if I end up needing to be on the transplant list (which is explained in more detail below), they won’t put me on the list if I’ve smoked in the last 6 months.
We have to go back to Boston sometime in the next couple of weeks for a heart cath and possibly an MRI. I could have these done here, but it is possible that something terrible will turn up in the test results, and if that happens, we want to be at BWH.
Based (in part) on those results, Dr. Desai will be able to make a recommendation about whether I need an implanted defibrillator (ICD). I hope not, in no small part because I have a phobia about having a machine implanted in me, but I’ll get over that if needs must.
Dr. Desai was quite clear that we need to be prepared for the possibility that I will need a heart transplant. We (still) hope this won’t be the case, but we need to be ready for it.
This means several things. Dr. Desai said that if I need a transplant, the best place in the US for me to be on the list is at Tampa General Hospital. Their wait times are 4-5 times shorter than those in the Northeast; he said they’ve sent three patients to Tampa for transplant recently. The other option is the Mater in Dublin, where Dr. Desai knows one of the docs who trained at BWH.
Without a short wait time, I’d likely need a ventricular assist device, which we’d like to avoid if possible.
With all of this, I need to see if I can get health insurance within the parameters of the American medical-industrial complex. Before anyone feels the need to sing the praises of Obamacare, let me be clear: I love that Obamacare has helped a lot of people. I’m thrilled about that. My issue with it is that it is designed to serve insurance companies. I’m a fan of the single-payer model—call it socialized medicine if you like—because I’ve lived in (civilized) countries that use this system to great effect.
Right now, we have about $35,000 in bills (in addition to drug and travel expenses). We have some savings, but at this rate, that won’t last long. I’d be lying if I said a sudden flood of tens of thousands of dollars in bills isn’t painful. If the “can’t be denied health insurance for a preexisting condition” thing is true and holds up, I should be able to get insurance (that will cost a fortune, so it’s a mixed blessing) starting in January.
A transplant is problematic in the context of my T1 diabetes, because the anti-rejection drugs make it extremely difficult to manage blood sugar levels. But we’ll jump off that particular bridge when—if—we get to it.
So…where does that leave us? Here’s the summary:
- Dr. Desai has adjusted my meds and added a new one. The hope is that this combo will work well enough to allow me to live my life on these drugs. So far—and I’m only really a day into it—I am feeling better.
- We have to go back to Boston sometime in the next couple of weeks for another test. The results of this could short-circuit everything to needing a heart transplant ASAP. But Dr. Desai didn’t think this terribly likely.
- Assuming the above test is OK, it will be 4-6 months before we know how well the meds are managing my condition (dilated cardiomyopathy) and whether I need a heart transplant.
So for the moment, I take my pills, adhere to some dietary restrictions, and I keep living my life. Keep working. Keep laughing. Keep reading. Keep eating chocolate. Keep trying to put something positive out into the world.
I’m sure I’m forgetting something, but I’ve rambled on long enough! Thank you for reading…this journey is much easier with company.