Kitty in a hammock  emortimer wrote almost 5 years ago

Hi, new to the site. Thanks for developing it. I subscribed to Clot Connect which is helpful and has a lot of good articles but covers a very broad area of clotting disorders. I’m thankful for a site that is narrower on the focus so I don't feel so lost or overwhelmed. I've been on warfarin since I was 25 and I am a lifer. I had a massive pulmonary embolism and collapsed lung at 25. Otherwise, I've always been very healthy and athletic, but genetics trump any healthy activities and diet. I have Factor V Leiden, a protein deficiency, MTHRF Gene (my hematologist calls it the Mother F'er Gene - he has a good sense of humor, of which I do too) and Factor II. I am now 34 and have had a few clots since while on warfarin. They have always been very small and usually end up in my heart where my triponin levels to elevate indicating potential clots. I am very symptomatic if my INR is above or below the target range which helps in knowing when things are getting too far out of range since I am difficult to manage for reasons beyond my and my doctor's understanding. Even if I am very consistent with diet, exercise and sleep, I still fluctuate, sometimes it even seems to depend on the weather. =)

I became a mother to a wonderful little boy while on blood thinners and had a incredible OB who took great care of me and my baby. Afterwards, the combo of being a woman and taking blood thinners made certain parts of my life rather dangerous and last year had a partial hysterectomy. After my surgery my INR started to stay very high and we tried switching to Xarelto. I did not like Xarelto. I felt horrible the entire time and ended up with another very small clot in my heart within 3 months. When I transitioned off Xarelto bridging with Lovenox, my INR was a 1.06. I feel much better on warfarin since it is quickly reversed with diet if I start feeling bad.

I am very interested in hearing what people's experiences are when they "feel bad." I have read multiple people use this term and wonder what the common symptoms are. Here are mine:

Too "thick":
chest pains and pains between my shoulder blades (I was told this was refereed pain from my lungs and can be from the scarring from clots)
shortness of breath - not like another embolism, but difficult to breathe
fatigue, not sleepy but overall sore, fatigued feeling

Too "thin":
dizzy spells
occasional blackouts
difficult to remember things (I call it "memory of a goldfish," many days it seems I only retain things for about 30 seconds)
fatigue, this time very sleepy, I can lay down and fall asleep for 2-3 hours in the middle of the day. I am not a napper so this is unusual.
metallic taste in my mouth
bloody nose - only on rare occasion
bruising (this one is obvious)

Also anyone else out there develop asthma or was diagnosed with exercise-induced asthma after having a PE or collapsed lung? I was diagnosed when I was 30 which seemed odd to me and for it to be exercised-induced which is also supposed to be rare. Not saying there is a cause-effect relationship but sure seemed strangely coincidental.

Category: Blood Clots

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Tiger cub  santaan - - posted over 4 years ago

Thank you for commenting and sharing your experience with medication. I do have a question, when you got your other small clots what were your symptoms? I like how you explained low INR and high INR Sx cause I feel the same after last week when they increased my INR to 7.5 because my INR was 1.8. Now I feel a little light headed here and there, headache but I'm getting mild discomfort in chest, same Dx I've been having since original PE. This all is a big change process for me trying to get use to it.

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Wolf  Pavan - - posted over 4 years ago

"Mother F'er Gene" - LOL. Wow, that's a good one hahaha.

And, congrats on your baby boy!

I'm sorry to hear about your PE and lung at such a young age, about the additional clots you got around your heart and your partial hysterectomy.

I can tell you're a cool cat, the way you nonchalantly talk about the tough experiences you've had. The way you throw jokes around - wow - you're awesome.

You may want to check out these posts and talk with the people on there and ask to get feedback regarding what you're going through. They will all get notified via email of your message.

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