Saturday, April 15, 2017

Blood Clots and Uterine Ablation...An Update

It's been a little over six months since I did something drastic. In a nutshell, I had the inside of my uterus burned out to stop my periods. It was a terrifying decision, but it turned out to be the best one I've made in this whole string of bad ones.

There are pictures. I'm not posting them because no one, including me, wants to see that.

I'm putting a break here so that anyone who isn't interested can scroll past to the yarn and fabric. And, just for the record, this is in no way a sponsored post. I'm excited about the ablation procedure I had and the new medication I'm taking because they've drastically improved my quality of life. I'm sharing it here in case it can help any of you.


For those of you who don't know about my clots --

Hindsight is twenty twenty and if I'd known what was going to happen, I would never have had knee surgery. My knee doesn't hurt anymore and that would be great...except for the blood clots. I got the first set the night  after my surgery and because I didn't know what to be watching for, I waited until Monday morning to call the orthopedist...and then the doctor wouldn't see me until late Tuesday afternoon.  Please, if you're having surgery, ask if blood clots are a risk and what you can do to avoid them. Everyone I know whose had knee surgery took preventative medication, but I didn't know that until after my own surgery.

I was on blood thinners for six months, the clots went away, and my general practitioner told me that they wouldn't come back and there was nothing to worry about or watch for. My husband and I went in with a list of questions we found at https://www.stoptheclot.org/, but he wouldn't answer them.

When the second set of clots hit, I walked around with them for a month, half-convinced I'd pulled a muscle and not wanting to pay for an ultrasound just to see that it was nothing to worry about. By the time I did go to the walk in clinic to see about muscle relaxers I was fully convinced that it was just a pulled muscle. (There was no redness, no swelling, none of the usual This Is A Blood Clot symptoms, just pain in my calf that came and went.)

The doctor told me it probably wasn't clots, but did a blood test to rule it out. And  then called me at 10pm that same night to tell me to head to the emergency room immediately because I had clots.  It went downhill from there, with my general practitioner telling me that I needed to go back on the blood thinners for life and that if I went off them I could die at any moment. (Literally, he told me that if I went off them long enough to test for the cause of the clots he couldn't guarantee I'd live to see the results.)

If you get blood clots, please please please insist on seeing a hematologist. It was months before I saw a new gynecologist who looked at my medical records and told me that being on blood thinners for life without seeing a specialist was wrong.

Guys, I have the best gynecologist and best hematologist on the planet. The GP had told me that Warfarin (same stuff as you buy at the feed store to kill rats with) was the only option and that the newer prescription medications were too expensive to consider. It turns out that my insurance pays almost the entire amount for the Xarelto and a manufacturer's program that pays for the rest. I'm no longer paying $150 a month for testing in the coagulation clinic (twice that if my levels are off and I need extra testing) and I can eat green veggies without obsessing over how much I ate on which day. It's one pill a day instead of two pills on Monday and Thursday, two and a half pills on Tuesday, Wednesday and Friday. I think the other side effects are better, too, but that might be me getting used to them after two years.

According to the specialist, I can stop taking my blood thinners today if I want to and take aspiring instead. She doesn't recommend it, because I'll get more clots sooner or later and while they most likely won't kill me, they probably will leave me with damage worse than I've got now. So I'm still taking them, but taking them to prevent more damage to my leg is different from taking them because I'll die if I don't.

The only bad thing about the new medication was my periods, which suddenly went from no big deal to ten days a month of "Is this the one that's going to land me in the emergency room for a transfusion?" It was bad. I wasn't anemic... yet. We knew exactly why the bleeding was so heavy, so my instructions were to live with it and head to the emergency room if I got too pale or felt faint because the only thing they could do was a transfusion. Do I even need to tell you how crazy that was making me? (I know other women deal with worse periods for their entire lives, but I am apparently a wimp. And also still very angry that this whole mess stems from a car accident and some less than competent medical professionals.)

I went into the knee surgery not understanding the risks. I went into my ablation knowing what could go wrong and that if it did go wrong the possibilities were pretty nasty. Most likely of the risks, the machine wouldn't get a tight enough seal and they wouldn't be able to perform the procedure. Least likely, my uterus would tear and the procedure would cook my abdominal cavity with boiling water. The doctor couldn't guarantee that if everything went right it would stop my periods. I thought about it for months before finally making up my mind and scheduling the procedure.

It worked! It hurt like hell for the first twenty-four hours, but I haven't even spotted for six months now. That's sixty full days of not suffering. I do still have my regular hormonal cycle, with the puffy ankles and moodiness. If my uterine lining grew back tomorrow, I'd consider it worth it and ask if I could have the procedure again. But I'm hoping this will hold me until menopause.

I know, this is probably way too much information. But I want to share it because I had such a hard time researching my options.

There are forums full of women who will only be on blood thinners for six months. I was looking for long term solutions. There are sites about class action lawsuits. (Not to mention those scary television commercials that provoke calls from family members wanting to know if that's the thing I'm taking and if I've heard how dangerous it is.)  There's one site about how no woman should ever have an ablation, written by a woman who heard it discussed at a dinner party and thought it sounded gross.

I had well-meaning friends who know nothing about blood clots or blood thinners assure that if I just changed my diet and ate the right foods I wouldn't need the blood thinners anymore. Blood thinners aren't like cholesterol or blood pressure medication. You're not trying to make your blood normal, you're trying to make it extra runny.

Do your own research. Get a good doctor who knows exactly what you're dealing with and ask lots of questions. Second opinions are your friend. I didn't get one from a different gynecologist, but I talked to him and the hematologist about the procedure and I know that they consulted with each other.

3 comments:

Little Quiltsong said...

Oh wow - you have been through a lot!! Without your perseverance.....a scary thought. Hope all keeps going well.

desertskyquilts said...

This sounds like a terrible ordeal - and ordeal would be the word! I'm so glad you are stubborn, and things are working out better.

lvkwilt said...

Thank you for sharing your experience. I have had my own ordeal for over eight years and finally found a doctor who told me my back pain (which I'd spent literally thousands of dollars on every holistic treatment I could find--including hundreds of injections) was caused by my neck. I frequently tell people that not all doctors graduated at the top of their class---you could well be going to one who barely squeaked by! You know your body and you need to be proactive about your own health care. Kudos to you!

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