The near-death experience (the epilogue).

I finally got to go home on Monday, May 26 after 5 days in the hospital. I ended up going home to PA to stay with my parents, as there was a whole lot of post-hospitalization things to deal with – lots of blood draws, appointments with a hematologist (aka blood doctor) and a vascular surgeon, having to self-injection blood thinner twice a day and the unbelievable bruising the injections caused.

Normal daily tasks became totally overwhelming. Every ache and pain terrified me. I had breakdowns almost daily. I was a nervous wreck. What I soon realized was that I had post-traumatic stress disorder (PTSD). A near-death experience will do that to you.

The following week, I went back to work. I got up every hour to do laps around the office to keep blood flowing through my legs. I stopped drinking green tea, which I previously drank daily, because it has high levels of Vitamin K, which can make a person more likely to clot.

When I saw the hematologist for the first time, they grew 13 vials of blood. No joke. They tested me for all different kinds of clotting disorders, and I was shocked when one of the tests came back positive. Apparently, I had a autoimmune blood disorder called the “lupus anticoagulant,” which is also known as antiphospholipid syndrome. Despite the name, it affects many people who do not have – and never develop – lupus.

In a way, I felt lucky to know that I had this blood disorder because most women who have the disorder never know until they have multiple miscarriages. They have to endure losing several fetuses and thoughts that they did something wrong before their doctor thinks to test them for antiphospholipid syndrome. Women who do have it need to inject themselves with blood thinner throughout their pregnancy, which usually ends in a healthy, full-term baby.

I was given strict instruction by my hematologist that I can never, ever go on an estrogen birth control again. In fact, I was advised never to go on any kind of birth control again. When I do hope to get pregnant, I will have to go off of my oral blood thinner and onto an injectable blood thinner as the oral blood thinner can cause major birth defects. Of course, I am not to the point yet where I am ready to get pregnant, but it is good that I know what I have to do in order to have a pregnancy that is safe for both me and the baby.

And then there is the matter of the IVC filter. Several months after this whole thing happened, I decided to move back to my hometown. I immediately got a new hematologist (Dr. K) and vascular surgeon (Dr. A). In late 2008, I visited with them and discussed the possibility of having my IVC filter removed. They both decided it was a good idea, so the removal was scheduled for January 2009.

The day of the procedure, I was a basketcase. After what I went though with having the IVC filter put IN, I was not at all looking forward to having it taken OUT. Fortunately, this time I would have anesthesia.

But as the procedure started, and I was dozing off, I felt them begin the procedure. I managed to slur “I can feel this!” and they subsequently gave me more anesthesia to knock me out. It worked, and I don’t remember a thing.

When I woke up, I was told that, unfortunately, they had not been able to remove the filter. Although it had only been in my body about 8 months, it had adhered to my vein wall, and they couldn’t remove it without risking that my vein would tear. I was so upset. This meant that I was going to have to be on blood thinner indefinitely, as the IVC filter can cause an increased risk of clotting (although that seems totally counter-intuitive).

So that’s where I am now. My filter is still in place, I am still on an oral blood thinner every day, I still have to be consistent with my vitamin K intake. I still have to see my hematologist (Dr. K) every six months. I have had no other long-term effects from the PEs.

This is the part where I get a bit preachy.

Since this happened to me, I’ve tried hard to let my girlfriends know about the risks of birth control. Of course, many, many women take it for years and years without a problem. But there are a lot of women out there who are like I was – obese and living a very sedentary lifestyle – who don’t realize that those two factors put them at risk, with or without a clotting disorder. I wish that these commercials for birth control would mention those two factors instead of only mentioning that women who smoke are more at risk for blood clots.

Of course, it is also important to note that there are also a lot of women who are NOT obese or living a sedentary lifestyle who develop clots. Most doctors never think to test for a clotting disorder unless a woman has a family history of blood clots. If a woman is adopted, or doesn’t know much about her family history, it would be worthwhile to speak to her doctor about being tested for clotting disorders.

I also have tried to let people know how important it is to LISTEN to your body. Many times, people intuitively KNOW when something is not right, yet they are hesitant to see a doctor or go to the hospital because they are too busy, or embarrassed, or self-conscious, or in denial, or don’t have health insurance. The only thing that I can say is that if you think something is wrong, DON’T WAIT. It could be a matter of life and death. If I hadn’t found my way to that hospital, I probably would not be sitting here writing this right now.

I am lucky that I got a second chance. There are many who were not so lucky. Because I survived, I feel like I need to spread the awareness and live a long, healthy, and productive life in honor of those who didn’t make it.

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6 Responses to “The near-death experience (the epilogue).”

  1. Jeanne Says:

    I stumbled on this blog from another and I am really glad I did! Thanks for sharing your story. I have really enjoyed your writing — you have a gift!

  2. Jenn Says:

    A friend of mine had some serious side effects from her birth control that scared the daylights out of me.

    I wish that they would do a better job of informing us of the side effects. I’d imagine that a HUGE majority of people taking birth control don’t take the time to research it, so sad.

    I’m so glad you shared this with everyone. I can’t believe you had to go through the beginning alone.. but am so really happy that you made it to the hospital in time.

    • Erin Says:

      I know…it’s so much more common than people realize. I know a lot of people who don’t take their birth control correctly and use it to delay their periods for months at a time. I want to scream at them “That’s not what its for!” I wish I had looked at alternatives to the pill at the time…but it just seemed like the easiest thing to do.

  3. Becca Says:

    I’m glad you told us all this story. I’ve never felt comfortable going on the pill (despite being offered in MANY times from doctors.) It seems like it is just prescribed like candy. Obviously it works for LOTS of women, but I agree it’s really important to do your research and know potential side effects.

    • Erin Says:

      I totally agree. Doctors just assume that a person won’t have any issues because the incidence of blood clots and other complications aren’t terribly high. I always tell people that unless they REALLY need to be on the pill (which I didn’t) that they should just try and use alternative methods that don’t have those kind of risks attached.

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