On Thursday, July 26, Hubby drove me to the emergency room because I was having trouble breathing. Caused, we thought, be a worsening of the bronchitis that I’d been (mis)diagnosed with earlier in the week. I ended up having emergency surgery that night, spending 6 days in the hospital (including the ICU), and being properly diagnosed with pulmonary embolisms. I tell this story partially as a journal of sorts, partially to answer some questions that have come up, and partially to offer some advice.

What are pulmonary embolisms?
You’ve heard of blood clots, right? They form for a variety of reasons, and depending on where they develop, they have different names. In the legs, it’s Deep Vein Thrombosis (DVTs); in the lungs, it’s a Pulmonary Embolism (PE); and in the brain, it’s a stroke.

How did you get blood clots?
Turns out I have something called Factor V Leiden (that V is pronounced “five”),  a genetic predisposition to over-clotting. Not everyone that has Factor V develops clots, but there is an increased risk. That risk gets even higher if you smoke (I don’t), if you’re overweight (I’m not), if you’re highly sedentary (not me) or if you’re on birth control (crap!).

You know those warnings that come with all birth control pills, about how you can develop blood clots? They aren’t fooling around. That’s a real threat. It probably didn’t help that I was on Yaz, which you may be familiar with thanks to all those TV ads offering to help sue the makers for causing…wait for it…blood clots. Hubby saw those ads years ago and expressed concern, but I stayed the course. In my defense, I talked to my gynecologist about it, but we thought the risk was low: I’m young and healthy, so surely I could beat the odds.

Wrong!

Why did they think you had bronchitis?
About a week and a half before my ER visit, I noticed I was out of breath as I used the stairs at work. I thought I was just coming down with something. The heavy breathing began in earnest that Sunday, and I eventually succumbed to peer pressure (Hubby and my co-workers) the next afternoon and went to my work’s wellness center, who told me I needed an x-ray of my lungs. I went to one of those evening clinics, and though I told the staff at least 3 times that I needed an x-ray, they simply told me I had bronchitis, gave me a breathing treatment and prescribed me antibiotics.

Are you totally pissed at them?
I’m actually not. I’m sure for 99% of people that complain about shortness of breath, bronchitis is the answer. I am, however, a little irritated that they ignored my request for a chest x-ray. It wouldn’t have shown that I had blood clots (you need bloodwork and/or a CT scan for that), but it would have shown I didn’t have bronchitis, and perhaps they would’ve probed a little more before sending me on my way.

The clots caused the shortness of breath?
Yes. My PEs were enormous, apparently, and caused 100% blockage of my lungs. The surgeon said it was the worst case he’d ever seen.

How serious was this?
Pretty bad. I didn’t know it at the time, but right after the surgeon spoke to me, he took Hubby aside and told him that he’d better start calling family and friends, because there was a chance this wouldn’t go well. Woah. Hubby was forbidden to tell me at this point, because they wanted me as alert and upbeat for the surgery as possible. But I’ve watched House. I know blood clots are Not Good, though it didn’t really dawn on me until Hubby called my brother and his wife, who immediately hopped in the car to come to Orlando. His wife is a nurse, and clearly understood what was at stake.

How did they get rid of the clots?
Ordinarily, they inject clot-busting drugs (like Heparin, I believe), and basically cross their fingers that the drugs attack the clots wherever they occur. My clots, however, were so large that there wasn’t time for such things. Luckily, my doctor was one of four in the state of Florida that is experimenting with a non-FDA procedure where they go in through your leg, insert tubes in the lungs, and release the drugs from there, thus decreasing the time it takes for the drugs to reach the clots. Twelve hours later, the tubes are removed and eventually, the smaller clots dissolve on their own through the help of other drugs.

How scary is emergency surgery??
Not that bad. At this point, I just really REALLY missed that little thing known as breathing (I was on oxygen, but it was still hard to catch my breath), and was willing to do whatever it took to make that happen. Plus, they gave me badass anti-anxiety medications, so that helped for sure! (As an aside, after the first procedure, my chest actually hurt worse than it had before. Turns out I could *feel* the tubes in my lungs. Weird!)

How are you now?
Fine, actually. Stronger every day (when I first got out of the hospital, I would get tired just from brushing my teeth, but I’ve come back quite a bit). Here’s where I am:

• I’m on a drug called Coumadin, a blood thinner. A normal person would be on it for about 9 months after a clot, but I may have to be on it for longer, given my genetic marker. Luckily, the food restrictions and side effects are minor: I have to watch my vitamin K intake (largely found in leafy greens), since that works against Coumadin, and I have to be careful not to injure myself, as I would bleed a lot.
• I’m supposed to take it easy for 4 to 6 weeks, so that means no running. After that, we’ll see, because Hubby is understandably nervous about me possibly injuring myself.
• Once you get clots, odds are increased that you could get others, so I’m under doctor’s orders to get up and move, to keep the blood flowing. Also, no more hormone-based birth control for me. Not ever.

The takeaway: Here are some things I’ve learned over these past few weeks.

1. If everyone is telling you to go to the doctor, you probably should. I’m never enthused to see doctors, because I know they’re not magical and able to heal you with a simple co-pay, but when friends, co-workers and your spouse all vote “go,” you should probably go.
2. Doctors aren’t infallible. Second opinions are invaluable. I’d never had bronchitis before, so I assumed the night clinic doc was right, but when I did research and realized my symptoms didn’t match (I didn’t have a heaving cough), I should’ve seen someone else immediately.
3. You are your own best advocate. Ask lots of questions. Make sure you understand what’s going on. No one will fight harder for your health than you.
4. You’re never too young to have a will. We don’t have one, and I handle all our finances. If something had happened to me, Hubby would’ve been screwed. While you’re at it, write down your usernames/passwords and store them somewhere safe.
5.  If you’re on medication of any kind, know the side effects. The odds may be small that you’ll contract anything, but the warnings are there for a reason. TAKE THEM SERIOUSLY.

I know this was really long, but thanks for hanging in there. Coming up soon: hospital visitor etiquette.

Oh, I almost forgot the best part! On one of the first nights of their Orlando stay, my bro went to a fast-food restaurant and I guess his wife ordered a kid’s meal. They brought the kid activity flyer back for me, so I would have some puzzles and such to keep me occupied for a time. The riddle below was on that flyer exactly as it appears, I swear. Talk about hilarious timing!

Q: What’s the harder to catch the faster you run?

A: Your breath

posted by Christine@RandomHangers.com
Tags: advice, birth control, blood clot, Coumadin, hospital, pulmonary embolism, surgery, Yaz
Filed under: Chat a Bit About...