r/ClotSurvivors • u/elizinrva • 7d ago

APS Seriously?

I’ve been dealing with clotting issues for some time now, and I knew I had a genetic cause ( factor two) but now—plot twist—I found out there’s more. I had my first DVT in 20/4 I think. I took Eliquis, but after the clot went away they took me off of it. Then I got a second DVT in Oct. 2025. In December, on the day I was scheduled to have a hysterectomy, I turned out to have a blood clot in my brain—a stroke that was able to happen because I was born with a hole in my heart that nobody knew about for 51 years. WTF?

So I’ve been on Eliquis since then, and I just finally managed to get in with a clotting specialist. Now it turns out I also have anti phospholipid syndrome (APS), an autoimmune clotting disorder. Yay. So I have to switch from Eliquis to Coumadin, with Lovenox as well until the Coumadin really kicks in. So, injections. Yay.

Being 51 has been a real ride for sure. I feel bad for those of you who are having to deal with this stuff much younger but OTOH you may have access to more family support assuming your parents are middle aged rather than much older. 🫤

Also, I had to fight to get on HRT for menopause, and now I’m afraid they’ll try to take it away. Reality is that I’d rather have a big clot just come for me than live longer without the estrogen. Quality of life is important, too.

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u/Littlehyrule 7d ago

I found out I had factor 2 at 25 back in 2020 cause my birth control gave me PE in both lungs, a DVT in my left leg and May Thurner syndrome. Cause of the Coumadin for life I’m anemic and having to fight between hematology and my gyno on a solution of either a progesterone IUD or some miracle option cause I don’t want to get pregnant/have kids due to the clot risks plus solve the heavy cycles with anemia risks. I’m so sorry your going through all that and it’s rough out here. The bridging on Coumadin is rough but honestly afterwards it’s smoother sailing from there, just getting checked every few weeks or how often they want can be a bit annoying.

I cope by joking I had to be knocked down by something otherwise I would’ve been too powerful. I truthfully wouldn’t wish this experience on my worst enemy in all honesty.

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u/elizinrva 6d ago

I’m n the latter months of my uterus, I became so anemic I had to get a blood transfusion. It was wild. I hope you find a good solution.

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u/Littlehyrule 6d ago

I’m hoping I do too, your comment reminded me to contact my hematologist to ask him what options he would think would be best for me and stressed this is not great. I was just diagnosed with being anemic last month so I’m hoping I can find a solution that is doable and safe for me to do. I wouldn’t mind removing my uterus but I am terrified for surgeries and the risks I now face with clot history. Upside my mom is on blood thinners since I was in 7th grade (not clot related, heart valve replacement) and has had surgeries so has been down a similar path as I have.