I don’t know where this story begins — or ends — so I might have a hard time telling it. This could be long and whiny, but here goes.
I was diagnosed with some sort of magical mystery cardiomyopathy about a year and a half ago. It was caught randomly, after I visited my primary care physician with an intermittent chest pain that got worse any time I breathed in deeply. He couldn’t (and still can’t) figure out what it was, but he sent me for some routine tests just to rule out the really serious stuff.
I wrote about the stress test and echocardiogram that followed, both of which came out . . . funky. Funky enough to necessitate a cardiac catheterization, which was bizarre and slightly painful, but confirmed that I no, I was not suffering from Coronary Artery Disease. Instead, my heart was just following in the footsteps of its owner: it was a little on the lazy side, for no particular reason.
The super-aloof cardiologist I was seeing pulled a few theories out of his high-falutin’ backside: maybe a virus had weakened my heart. Maybe it was diabetes. Maybe I’d never find out. He handed me a prescription for lisinopril and sent me on my way, with instructions to come back in 6 months. After another echocardiogram half a year later, not much had changed. My ejection fraction was still hovering in the low 50s. Dr. Distant handed me another prescription for carvedilol and asked me to come back in another six months. I bet you can’t guess what happened.
My condition was virtually unchanged. I still had no symptoms of the cardiomyopathy itself, but when someone tells you that your heart’s not doing what it’s supposed to, you take their word for it and do whatever they say. The cardiologist instructed me to double my dose of carvedilol (which was tricky, because my blood pressure is already quite low, and carvedilol and lisinopril lower it further) and to plan on taking it for the rest of my life. Oh yeah, and come back for yearly echocardiograms.
Then he asked me if I had any questions. “This medication,” I began, “I know you can’t take it when you’re pregnant. What do I do if I want to start planning family stuff?”
He sat there for a second and exhaled slowly. Clearly, this was the most boring case of cardiomyopathy he’d ever seen. “Well, just let me know when you start thinking about it and we’ll figure it out then.”
“How about now?” I asked. I ain’t getting any younger, after all.
“It can be unsafe to discontinue this medication. If you get pregnant, just stop taking it.”
I didn’t realize how terrible this advice was until I relayed it to my CDE and the endocrinologist she works with — both of whom are affiliated with the same clinic as my cardiologist. (Mayo Clinic!) They both looked at me like I was crazy, and I could tell my CDE was pissed at this cardiologist. “This is not acceptable,” she said. “This is an important issue in your life and you deserve answers.” She recommended I see a high-risk obstetrician to seek their opinion. So I made an appointment — for six months later.
Fast-forward to last month. Kick-ass CDE had made copies of all of my diabetes and cardiology-related records and had given them to me to bring along, so the OB could get a clear picture of what I’d been dealing with over the past year. I waited in a room with half-a-dozen enormously pregnant women, and was then called back to speak with a nurse. She asked me a ton of questions and we went over all the paperwork I’d brought along. She explained the risks of pregnancy and Type 1 diabetes — most of which I was familiar with, just not in such graphic terms — and then told me she’d send the doctor in to give me an official recommendation.
The OB was wonderful and thorough and understanding and supportive. She, too, detailed all the risks of pregnancy, but withheld some of the horror stories.
Then came her recommendation. “If it was just the diabetes we were dealing with,” she said, “I’d say go for it. But this cardiomyopathy thing makes it a lot more complicated. I can’t tell you ‘don’t do it,’ but I can tell you that there’s about a 20% chance that the extra strain on your heart from a pregnancy could leave you on a transplant list. So I would think long and hard about whether you want to do this.” (And that’s a whole other blog post.)
She, among others, wasn’t satisfied with any of the answers I’d received from my cardiologist at Mayo, so she referred me to a group in the same hospital (“All the doctors I work with got their stents there!”)
That appointment happened about a week later. To say the least, I was deflated by the news I’d received from the OB, but I was still determined to figure out what the hell’s wrong with my heart, so I went in with only as much optimism as I could muster. That cardiologist was pretty cool. She didn’t have my records, but I detailed all my adventures for her and she checked me out and listened to my heart.
Then came her recommendation. “I don’t think this is diabetic cardiomyopathy. Your A1c is good and you’re so young, so I think it might be a virus. Do you drink alcohol?”
“There’s a chance that this damage to your heart is caused by alcohol. I’d like to do a more accurate test of your ejection fraction in three weeks. Stop drinking, and we’ll see if there’s a difference when you come back for the test. If you’re better, that may be our solution.”
She might as well have ordered me to follow the grub milkshake diet plan. Three weeks without drinking, fine. But the rest of my life? Without wine or beer or a delicious Mimosa? You know that part of A Christmas Story, where the Bumpus’ dogs take the turkey and the Ralphie voice-over laments all the delicious turkey treats they’ve lost? That was what went through my head: “No brewery tours! No wine and cheese parties! No champagne toasts! No beer-and-a-hot-dog at the baseball game! It was gone — all gone!”
Either of these recommendations — not having my own biological children and possibly going dry for the rest of my life — might have been easy to absorb had they not come within days of one another. But suddenly, I felt like all these things that “normal” people get to do were being snatched away. Next they were going to tell me I’d have to start counting carbohydrates and sticking needles into my own body.
I’m not used to being sick in a way that I can’t keep tabs on every few minutes, and I’m not used to being told that there are things that I really can’t — or shouldn’t — do. I’m also not used to being sick in a way that I don’t even feel. I mean, I think I feel pretty healthy. Compared to a night of low blood sugars, this cardiomyopathy is nothing.
I guess I feel like I’ve tried so hard to be healthy, and it’s still not enough. Part of me really hopes that this condition is caused by diabetes. That way, I can at least fence it into the same area of “Shit
I’ve diabetes has done wrong.” I already feel guilty enough about the years I spent in college neglecting my blood sugar levels, I don’t want to have to feel guilty about the keg parties, too.
My next test (it’s called a MUGA scan) is scheduled for Tuesday. I’m nervous, but I know I need some more answers. As long as they don’t tell me to give up the Diet Coke, I’ll probably survive. I hope.