New to the site with PE and Warfarin questions...
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:
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
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.