Friday, September 19, 2008

Don't just sit there!

Deep vein thrombosis. Pulmonary embolism. Not sexy or funny subjects, but the topic of many news stories this week after the surgeon general put out a call to action to prevent these life-threatening conditions.

You might think this is a problem only for the jet-setting crowd (does anyone actually say jet-setting anymore?). But let me tell you, it’s not. Anyone who stays put for a long time—in an airplane, in a business meeting, sitting in front of a computer—even during the three-hour long The Lord of the Rings: The Two Towers—is at risk for developing a blood clot.

I’m going to tell you the story of my blood clot. If you don’t want to read all the way through my verbosity, just take this message to heart: Deep vein thrombosis affects up to 600,000 people in the U.S. every year. One in every 100 of them dies. For untreated DVT, the rate is much higher.

Don’t sit still, people!

Several years ago, as I sat in a crowded classroom for a full-day class, my left leg fell asleep so badly that I wondered what I would do if it didn’t wake up before the class ended. Crawl to my car? Ask a classmate to carry me? Sit there until my husband came to find me?

Two weeks later, I woke up in the early hours of a Saturday with a cramp in that leg. Or at least I thought it was cramp. But it didn’t go away, not that night or the next day or the next.

Since I was on the Pill and had read the little brochure that warns about blood clots, I called my doctor’s office first thing Monday morning. The earliest appointment the receptionist would give me was on Wednesday.

Thinking that it was just a muscle thing and no cause for panic, I tried to get rid of the pain while I waited for the appointment. I stretched. I walked and walked. I massaged my calf.

I drove to and from my all-Saturday class 100 miles away, working the clutch through heavy San Francisco traffic. It’s amazing that I didn’t suffer an embolism right there in the middle of 19th Avenue.

I almost had to beg to get the ultrasound. Due to the illogical rules of our insurance company, the doctor couldn’t order the test to find out if I had a blood clot unless she was almost certain that I had a blood clot. And she wasn’t. I was too young. I didn’t smoke. There was no family history. I hadn’t taken a long flight or suffered a blow to the leg.

I tried logic: This was a life-threatening condition, not the common cold. Eventually she agreed and I got the test that afternoon.

For me, a mom of a kindergartner and a toddler, the ultrasound was like a spa treatment. Lying in a quiet, darkened room as a very handsome technician put goop on my legs, I almost fell asleep. He told me that my doctor would get the results that evening.

The next morning, I called the office and left a message. I called again and again. Finally, at 6:30 pm, after another day of running around and potentially dying, I got a call. The doctor told me to lie down with my leg at a 35-degree angle, right now. Get someone to pick up a prescription for a blood thinner, right now. Go to a special clinic first thing in the morning to learn how to inject myself with a second blood thinner. And for goodness’ sake, move as little as possible.

I’d had that clot for two and a half weeks before I learned that there was indeed a reason to panic. I can only be thankful that it hurt like hell, because for some people the first sign of a clot is collapse.

And so started six months of a scary anticlotting medication. My body needed such a large dose that the nurse practitioner in my doctor’s office said “Holy shit!” when she asked me about it (aren’t they taught that saying “Holy shit” is not a confidence-instilling response?).

I had to watch my diet and other medications carefully to avoid dangerous interactions. I wore a very fashionable Medic-Alert bracelet, so that people would know that I could easily bleed to death, and lovely compression stockings to keep the blood in my legs from pooling. I gave myself shots in the abdomen (and was very grateful for that roll of baby fat still hanging around). I met a lot of great lab technicians as I went for the blood tests that made sure the medication was balanced (daily for the first few months, then every other day, then twice a week, and finally once a week for last few weeks).

I was told to avoid activities that could involve falls, bumps, or other trauma: no horseback riding, bike riding, motorcycle riding, waterskiing. Not so hard. But also no cutting myself, no bumping into things, no falling down (if you know me, you know what a complete klutz I am). I was told to use an electric razor because a regular one was too dangerous. A few weeks in, I got hit hard in the head with a soccer ball and spent a day wondering if my brain was bleeding.

For the first two weeks, until the medication was balanced and the clot was stabilized, I was supposed to remain as motionless as possible, while somehow also driving myself to the hospital, taking care of my kids, working, going to school, and watching for signs of an embolism (chest pain, difficulty breathing, dizziness, falling down dead). I was told that “any movement of your foot or leg can send that clot flying through your veins and into your lungs or brain” (more stellar bedside manner from my medical team). I carefully considered every trip to the bathroom and to the kitchen to put the kettle on. Just how desperate was I for that cup of tea?

I also got to be a pushy self-advocate with a doctor who, going through some issues of her own that eventually led her to take a personal leave, made life-threatening mistakes with my medication, and with a receptionist team who didn’t appreciate my daily calls to the office for blood test results. I had learned hard lessons about advocacy during my first pregnancy and I was more than willing to be “that woman” who called until she got an answer.

Now, over seven years later, I still have post-thrombotic syndrome caused by permanent damage to the vein where the clot was. If I sit on the floor too long, I can feel the blood pool in that vein. My leg often aches; high-impact exercise and yoga cause it to hurt for days (on the bright side, I have a great excuse for not jogging!). I'll never be allowed to take estrogen again, in case it was a factor. I’m at higher risk for developing another clot and any time the pain is particularly bad or long lasting, I start to worry. I can’t sit still for long periods of time, which, because I work at home, means I make frequent trips to the kitchen “to stretch my legs” (= to get a cookie). I constantly nag my kids not to let their extremities go to sleep.

Before I went through this experience, I had no idea of the dangers of sitting still or crossing my legs. If I hadn't been on the Pill at the time, I would probably have ignored the pain, maybe with dire consequences. The moral of this very long story is this: Be aware of the causes and symptoms of deep vein thrombosis, and get up and move around!


Hayley Townley, Breast Cancer Survivor Extraordinaire said...

And that is also why, on the bottom of most vibratory devices (yes, those too) it says

It is absolutely okay to be "that woman", because if not you, then who will look out for you and your health.


Mallu said...

Thank you for the good reminder! I'll go to the kitchen and have a cookie right away.

Oh no! We have no cookies!!! Luckily I found some nuts - otherwise I would have gone nuts.

No, seriously: I shouldn't just sit here.

Have a nice week, Susan!

Margerie said...

LOL at Hayley, the queen of vibratory devices :)

But I need to thank you Susan now. I have been busy with mom's health issues. She was having some problems after her latest surgery. As I was driving up to see her, she called and told me about her new chest pain. I thought about this post and MADE her go to the ER. She did not have a blood clot, but she did have 2 liters of fluid around her right lung.

So thank you Susan for taking the time to post this. I don't know if I would have been able to convince my stubborn mother to get treatment otherwise.....

laura said...

Thank you for this post...I notice that after long hours at my desk, my calves get tight and I'm always trying to remember to get up and walk or jog on my mini tramp to keep blood and lymph flowing. I really appreciate this entire post...lot's of good information.