This is the first of what will be a series of posts about a journey I started a few days ago. I debated about whether chronicling this is a good idea, whether it would be helpful to anyone, whether I would be able to do it well.
I thought about Lisa Bonchek Adams. I considered the power and beauty of the legacy she left us all. And I decided that Lisa probably would have encouraged me to write about my experiences, and so I’ll do so here. I hope that this might be helpful to someone out there some day…and right now, I hope it will be helpful to me. If that’s selfish, so be it.
Here are the salient facts:
I am 44 years old. I have had Type 1 diabetes for 36 years. I’ve had Graves’ Disease for 21 years, and had my thyroid gland removed in 1995. My father and uncle both had cardiomyopathy; my dad had a heart transplant 22 years ago, and my uncle died of the condition at 34 years old (he was offered the possibility a heart transplant, but refused to commit to giving up cocaine).
For the last few weeks, I have been experiencing a shortness of breath. It got progressively worse, to a point where I couldn’t sleep for more than a couple of hours at a time. I rushed to the interwebs, and figured I probably had some kind of pneumonia.
Last Tuesday, I had a chest x-ray. On Thursday, I went to see my GP. The x-ray said that I had fluid on my lungs (pleural effusion) and possibly a mass in my lungs, and so my GP sent me to the local ER.
It’s worth noting here that we do not have health insurance. The reasons for this probably deserve an essay of their own, which I might write at some point.
In the ER, they re-did the chest x-ray, which showed the same things the one a few days earlier had. So they did a CT scan with contrast (injecting the contrast produced one of the weirdest physical sensations I’ve ever experienced—not bad, just weird). That showed that there was no mass in my lungs (hooray!), but there was a lot of fluid. There was no evidence of infection, so it wasn’t pneumonia (boo!). My heart was enlarged, and I was in congestive heart failure.
Fuck. Not good. I knew from my dad’s transplant experience and uncle’s death that this was definitely not good news.
So they admitted me because they wanted to do more tests, and also get the fluid cleared so I could breathe again. As adverse as I was to being admitted, it made sense to spend a night there to get the tests done quickly. And not being able to breathe was getting really old.
I went to the cardiac unit. Thursday night was incredibly scary. I slept for maybe 15 minutes. The doctor (whom I hadn’t yet seen) ordered me to get “nothing by mouth,” so not so much as a cracker or ice chip for me. My husband and I were both exhausted and starving…not a great scene. The only good thing that night was the many messages of concern, support, and love I received in response to my “no need to worry, but I’m going to the ER” Facebook post a few hours before.
On Friday morning, a porter arrived and brought me for an echocardiogram, which is basically an ultrasound of the heart. Again, from my dad’s experience, I knew this was an important test, and would give me an ejection fraction, a measure of how well the heart is pumping out blood. A normal result is 55-70.
When the cardiologist arrived, he seemed baffled at seeing a slim, 44 year-old in his ward. But he didn’t bat an eye when he told us that my ejection fraction is 15.
Fuck. 15 is a long way from an average of 60.
Now, I’m sure this cardiologist is a fine doctor under the right circumstances. But my case clearly put him out of his depth. He said they were going to do a cardiac catheterization, an invasive and unpleasant procedure (that costs upwards of $8,000), and then disappeared for 2 hours.
At which point my husband and I left the hospital. We were in shock, yes, but we knew this is a serious situation, and this was not the place to try to deal with it. So, much to the surprise of the nurses and the doctor (who reappeared as we were walking toward the elevator), we walked out.
Turns out that was an excellent decision.
It’s now Sunday afternoon. Since we got home on Friday afternoon, I’ve spoken with cardiologists who are specialists in cases like mine. So here’s where I am now:
I’m taking lasix (diuretic that will prevent my lungs getting full of fluid again) and carvedilol (beta-blocker that helps blood move through the heart). As a result, I’m feeling much better. I can breathe and sleep. I’m moving around a little slower than normal, but I’m definitely not an invalid.
It’s worth noting here that nothing I write should be taken as medical advice—it is just my experience.
I’m gathering as much information as I can from cardiologists who specialize in cases like mine. I am incredibly lucky to know people who know the right people! So far, I know that I have treatment options. I’ll know more early next week; the cardiac experts who deal with this condition at Brigham and Womens in Boston are having a conference about me (I feel so important!) on Monday.
It does seem likely I’ll need a heart transplant at some point. The only good news about that is that Tampa General Hospital (which is all of maybe an hour’s drive from our front door) has some of the shortest heart transplant wait times in the world (average 3.2 months).
As mentioned above, I’m not an invalid. I don’t have to stop working, or even slow down. I’m counting on work to keep me at least a little sane, and I’m so grateful to have work to do that I love. Bouchercon—the annual conference of mystery readers and writers (and others) with which I’m heavily involved—starts on October 8. The only way I’ll won’t be there is if I have to be in a different city to see a specific doctor. But that’s unlikely. I plan to be there, even if I am moving a bit more slowly than usual.
The thing I do need to think about stopping is smoking. For anyone inclined to IToldYouSo me, my current condition is genetic; it is not a result of smoking. That said, I need to do whatever I can to help my heart work better. So I’ve cut way back on the cigarettes already, and will keep trying to do so.
So that’s where I am now. I will have more information in a few days, and I’ll write again then. I’m going to put these posts in a new category called Living Life, because that’s what I’m doing…and intend to continue doing. If you have any questions, please feel free to post them here or email me, and I’ll do my best to answer.
Thank you for reading.