Wednesday, February 19, 2014

Ok, I'm ready to talk about it

Most of you don't know this. I briefly mentioned it in a previous post, but didn't go into details. I haven't wanted to talk about it. I didn't want the pity, the "Oh, you poor thing. You could have died!" And I didn't know what to say, how I really felt about it all. But three full months have gone by, and I think I'm ready to share with you my thoughts and feeling on my experience.

This is going to be long, and since I don't have any related photos, I'm just going to post random ones to break up the text.

See, at the end of October I was in the hospital. I was having difficulty breathing and then, suddenly, I started to have pain in my right calf. I went to the doctor when I was convinced the breathing issues weren't stress related (It was a VERY stressful time for me) and with a quick ultrasound to my leg, it was determined: I had blood clots.

The breathing issues were due to pulmonary emboli, tiny chunks of the blood clot from my leg that had made their way up to my lungs. The doctor at the hospital told me I was lucky. 1 in 3 people who have this condition don't survive it.

Fortunately (if you can look at it that way...) my youngest brother had suffered the same thing two years ago and the doctors knew what to look for, things they wouldn't normally look for in a healthy, young person.

So I got a lovely little shot of a drug called Lovenox and a little red pill (Coumadin) and got to try out some fun chest-scanning technology, followed by a full-service one-night stay at the hospital, something I haven't done since the day I was born.




My recovery has been gradual. The first week was excruciating. I had pain in my side similar to a running cramp that just wouldn't go away. And the pain in my leg was so bad that, by the 5th hour after taking a dose of Tylenol I was watching the clock, wriggling in pain, cheeks stained with tears, waiting to take that next dose. It kept me up at night, so along with being in a lot of pain, my days were spent in a foul mood. I had no appetite. I could do nothing more than lie on the couch and wait for the hours to pass.

By the second week, the pain had subsided enough to sleep. And to go back to work. My lung capacity wasn't (and still really isn't) back to 100% so going up and down stairs was tough. Since my office is upstairs, just going down to use the restroom presented a challenge.



Toward the end of my first month, I finally got an appointment with a hematologist, who said I needed to change medications. At the hospital, they prescribed me a newer drug called Xarelto. There were no dietary restriction and no monitoring with it. But also no antidote, which meant that if I had a serious bleeding episode (like a bad car accident), there was no way to get my blood to clot. Scary.
The hemo wanted me on Coumadin, which meant while my levels were getting to where they needed to be, I had to go in for daily injections of that lovely Lovenox drug I had in the hospital. It was nasty. The needle itself was not bad, but the burning that lasted about 15 minutes after the needle was removed was not any kind of fun. I had to have 9 of those injections before my levels were good.

This was the two weeks before Christmas. Meanwhile, I got the flu. I had to go in for blood draws and injections while I had a raging fever and wanted nothing more than to be crashed out in bed.
I was afraid I'd have to go in on Christmas. Fortunately for me, Christmas Eve I got my second reading within range and my last Lovenox shot. Since then, life has gotten a little bit closer to normal. I have to take a pill (or a pill and a half) every day and go back for regular blood draws to make sure my dosage is still good, but that's about it.

In the midst of all that, I learned a little bit about why this happened. There were some situational things, like the long car ride from Southern California, the fact that I took birth control and I have a sitting job. From blood tests I learned that, like my brother, I have a genetic abnormality that affects the way my blood clots. It gives us roughly a 2% increase in the chances of developing a blood clot, and since I have two different abnormalities, my changes are higher although they can't tell me exactly how much higher.



This means for the rest of my life, I have to worry about clots. I have to change my entire lifestyle to ensure I don't encourage another blood clot. That entails making sure I drink enough water, get up enough times throughout the day, don't cross my legs, wear compression stockings if I travel, basically do all I can to make sure my blood continues to flow steadily through my veins.

It's an adjustment, one with many implications and consequences if I get it wrong.
But those are just the facts. Beyond them lies the part that gets personal. What does all of this mean to me?



When I finally took the time to sit down and contemplate all of this, I was surprised by my reaction, as surprised as I was when I was so relaxed and chill the morning before our wedding.

This isn't the end of the world. I'm still very much alive and this isn't going to kill me (as long as I do what I'm supposed to). So many people seemed to think I should feel angry or resentful. The honest truth is that the question of "why me?" never crossed my mind.

Does this suck? Sure. I miss my birth control pills like you wouldn't believe (I'm actually kind of a baby about it). I hate getting pricked  by needles and I have a standing order for blood draws now. I have to take a scary pill every day that saves my life in one moment, but could take it in another (it prevents blood from clotting, so I could bleed to death). It sucks. But I can live with it.



There was a moment around my third or fourth injection of Lovenox, just before Christmas, where I was struck with the most keen sense of gratitude for my situation. As I walked toward the door after my shot, holding my belly where the medicine still stung, I looked around the room. It was filled with people in chairs just like the one I'd just gotten up from, except most of them were the for cancer treatments. Long, painful and scary infusions of nasty stuff they hoped would save their lives. And I realized how lucky I was. I let my hand fall from my stomach and took a moment to thank God that I was there for a little shot in my belly and not a massively scary long term treatment for cancer.

I don't feel sorry for myself. I thank God every day that I'm still alive, that modern medicine granted me a life longer than 30 years. I'm learning not to take it for granted, that every moment is unique. Some are good, some are painful, but all of them contribute to who we are and the life we live.


So yes, my life is changed. Yes, there are some new complications. But I'm still alive. And life is pretty darn good. 

4 comments:

  1. I love you honey and am sooo glad you are still alive!

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  2. I started BC pill back in August (7 months ago), and recently I started feeling this pulled muscle on my hip and calf. I thought it would go away but it hasn't (it's been a little over a week). I have no history in my family of blood clots, after reading this article I think I am going to have it checked out. Thank you for sharing.

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    Replies
    1. It can't hurt to have it checked out. The peace of mind alone is worth knowing you don't have a clot! I hope everything is okay!

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