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.
Damn, Erin! Okay, the smoking cutback is good. After John, I started smoking again! Yikes! That is a lot for you to process, but glad the meds are working! Breathe! Keep breathing! Love to you.
Wow! you are dealing with a whole pile of S@*t. As a former smoker, yes, stop. It will be a good step just on general principles. I just had to have the iodine contrast as well; it was completely weird. Sending good wishes for the best outcome possibl!
Giving you all the hugs I have. Can’t wait to see you in Raleigh for the real thing, but for now the virtual will do. I am glad that you are getting the knowledge you need to make the most informed decision. We are here for you, now as always.
Thank you for sharing this, Erin. It’s good to understand what a friend is going through. Heart disease (perhaps not precisely the type you’re experiencing because you have a genetic predisposition toward heart problems) is the number one killer of women and we don’t hear enough about it. A friend’s mom recently had a massive heart attack–she’d been experiencing shortness of breath for awhile but she ignored it. Turned out she was minutes from death by the time she was treated. She’s recovering now but there you have it. My love and good vibes are, as always, coming your way.
Thanks for posting this, Erin. I have been thinking of you often. I am not the spiritual member of my family, but I will ask my reiki-master wife to send you good energy. It was incredibly brave of you to walk out and take control of your treatment that way. See you in two weeks.
So sorry to hear that you’re facing all of this. I’m glad to hear that you have good doctors helping you and that the meds are helping you feel better. I’ll be thinking of you and sending all the good thoughts I can your way.
I’m so glad you’re writing about this and your experience. Thanks for sharing, and many hugs to you.
Erin, I’m glad you shared this step of your very personal journey; it is tremendously brave. Know that you are thought of often with well wishes, and I’ll continue to pray for your health to improve. Hugs.
All the love and light, Erin. All the Love and light. <3
Erin,
thanks so much for sharing this. will keep you in my thoughts and prayers and looking forward to seeing you in Raleigh
xx
I’m glad you posted this. I was going to wait for things to settle down before I asked questions about what the hell was up. I pretend to have a medical degree but I have to admit, this is not my area of expertise. I am glad you are getting 2nd opinions. Ugh. It’s so hard to get my mind around. I can’t imagine what you are going through, but you are tough as shit so I feel really confident about that.
Erin, thank you for sharing this information about your condition. I knew it was your heart, but I had no idea what exactly the problem was. Sharing your experience might encourage someone else to go the ER when they are having similar symptoms. Great news that you are so close to a hospital and doctors who can deal with your condition in a timely manner. Glad that the meds are helping now, and that you have options and connections to those options. I was afraid that I wouldn’t get to meet you at Bouchercon in Raleigh now, but happy to know you still plan on being there. But, please don’t push yourself. You are in my prayers daily. xxxooo
So good of you to take control of your health situation. Hang in there, keep us posted. Many, many healing vibes coming your way….
I quit smoking (after 21 years / 2-3 packs a day) on the V2 (zero nicotine) e-cigarette. First attempt to quit & it’s been almost 6 years now since I quit. You can get the starter kit & replacemdnt “filters” for well under $100. It’s worth s try. You are in my thoughts ♡
You have the right title for these posts and the right attitude for us all: “Live Life!” My prayers are with you, Erin. Can’t wait to see you in Raleigh.
Sounds like you’ve got things well in hand. If I can offer any advice it is this: do quit smoking. I smoked for 30 years and finally quit pretty much cold turkey. You need to do this, and not just for the reasons you might think. Quitting that habit will make you feel like there is nothing in the world you can’t accomplish. Also, at the cost of ciggies today, that alone could help offset the fact that you don’t have any health insurance. Sending much encouragement and love your way.
The crime fiction community will be cheering you on What impressed me is that you had the calmness and thoughtfulness to leave a hospital when you realized they weren’t the best mix for your situation, and then to start researching. Cool under pressure – bodes well for the future too!
You are fabulous Erin and taking this bull by the balls and you will make it thru this shit.
Good job on the cigs. Chew on straws or toothpicks. Not the same but much better.
I’m with you for anything.
Xoxo keep me posted
-sissy
Well I’m glad you shared your harrowing ordeal. Although I can’t pretend to know what you’re going through I was happy to hear the inside scoops of your leaving the hospital AMA – definitely sounds like the right decision. I’m extremely relieved to hear you have some good connections that led you to the perfect specialist. A heart transplant sounds like a plausible next step & it sounds like under the circumstances you’re in the best location with such a short wait time. I will keep you in my thoughts & send lots of positive energy your way. Much love, Tasha
Congestive heart failure is very scary. I have no personal experience of it, but most people in my family have had heart disease. Misdiagnosis like you had is common.
I hope you can quit smoking, and that the treatment options are good given your relatively young age.
Best of luck and I wish I were going to Bouchercon too.