Factor V Leiden and MTHFR mutations-Blood clots in femoral artery

Posted by susangourdlady @susangourdlady, Dec 30, 2019

In May of this year I was scheduled for a femoral artery catheterization to evaluate/remove blood clots in my left femoral artery. The first attempt was to insert “clot busting drugs”. I was not awake during this part of the procedure. I was taken back to my hospital room and had to stay on my back for 24 hours before taken back to the cath lab. The sheath where the Dr. would have inserted his operating equipment was filed with clots, so he had to get some kind of thin wire to clear the sheath, I was not asleep during this part. I had been in terrible pain which got much worse during this procedure, My abdomen started to fill with blood and the entire abdomen hurt tremendously. It was then that my foot and leg started swelling and I could not feel anything nor could I move them. I was freezing cold and my hemoglobin went down to 4. My blood pressure kept dropping then going up slightly then dropping again and so they could not give me any pain meds at all. I was screaming in pain. I yelled at the Dr. to just cut my leg off. I yelled at him to just put me in a coma if they could not give me any pain meds. Little did I know that he had left the cath lab twice to tell my husband that i might need to have my entire left leg amputated!! They called a vascular specialist in to see if she could find a new vein in my arms for what, I am not sure, maybe anesthesia. She used ultrasound on my arms but could not find a vein. All of them had collapsed. at one point i was just holding my hands on my face and sobbing and suddenly realized that I had no tears at all. I was that dehydrated and still in terrible pain. finally my blood pressure elevated enough that one of his team members
ran over and injected anesthesia into a port. Then my cardiologist inserted two stents and good blood flow started up. I woke up back in my hospital room with my cardiologist fishing around the bed for my left foot. I could feel his finger on the arch of my foot. It felt hot. Everyone round (his team members) smiled. Then he asked me to wiggle my toes and I could move two of them a little bit and everyone cheered! So I am now on Xarelto 20 mgs and was on (not sure how to spell this) prasugrel? 10 mgs and went home the next day. I had horrible spontaneous nose bleeds with 3 inch gelatinous clots. I had bruises all over m legs and arms from any little bump, and very small scratches would bleed like crazy. He exchanged the prasugrel to plavix and that seems to work a lot better, with fewer nose bleeds and bruising. I have Factor V Leiden from one of my parents and the MTHFR mutation from on parent although it is a compound mutation. My homocysteine level was high so a hematologist I went to see prescribed folic acid.I take a regular vitamin that has both B12 and B6.

My daughter says she thinks I have PTSD from this experience-though I was not ever in ICU. I can’t stop talking about it. I have my Ph.D. which is a research degree, so unfortunately, I have been doing a lot of research on the MTHFR genetic mutation. So much conflicting information is out there about the MTHFR mutation effects. I feel like I am spinning. I have so many Doctors and no one is really taking this by the horns so to speak. For instance I see a neurologist for restless legs, insomnia and for strange leg movements I sometimes have. Side effects or consequences of MTHFR have all three of these plus many more listed as symptoms of MTHFR mutations. Anyway, I could go on and on and it is time to sign off and just remind everyone here that being in the ICU must be terribly frightening, but other medical procedures can have lasting negative effects as well. I know you know that. I am just PTST-ing. 🙂

Hi @susangourdlady, I added your discussion to the Blood Disorders group. I did this so you can more easily connect with other members living with Factor V Leiden and MTHFR mutation, like @sherohio @dmac5 @cncwi17 @warpedtrekker @bluesplashgirl @momofjames @prairiesmoke.

You may also be interested in this discussion
– Newly diagnosed with coagulant factors https://connect.mayoclinic.org/discussion/newly-diagnosed-with-coagulant-factors/

And this blog post
– Clotting disorders: Factor V Leiden and blood clots https://connect.mayoclinic.org/page/hematology/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/

Serious health events, like the one you described, can most certainly lead to PTSD. I'm glad you found the Mayo Clinic Connect community, a place where you can talk about your experience. You mention that you just "can’t stop talking about it." That's understandable. Are people around you getting fatigued of your need to talk about it? Are they expecting you to "get over it?" It takes time to accept the new normal. What helps you wade through the information and do what is right for you?

REPLY
@colleenyoung

Hi @susangourdlady, I added your discussion to the Blood Disorders group. I did this so you can more easily connect with other members living with Factor V Leiden and MTHFR mutation, like @sherohio @dmac5 @cncwi17 @warpedtrekker @bluesplashgirl @momofjames @prairiesmoke.

You may also be interested in this discussion
– Newly diagnosed with coagulant factors https://connect.mayoclinic.org/discussion/newly-diagnosed-with-coagulant-factors/

And this blog post
– Clotting disorders: Factor V Leiden and blood clots https://connect.mayoclinic.org/page/hematology/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/

Serious health events, like the one you described, can most certainly lead to PTSD. I'm glad you found the Mayo Clinic Connect community, a place where you can talk about your experience. You mention that you just "can’t stop talking about it." That's understandable. Are people around you getting fatigued of your need to talk about it? Are they expecting you to "get over it?" It takes time to accept the new normal. What helps you wade through the information and do what is right for you?

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Thank you so much for the invitation to other groups. I am just amazed at this forum and all that is done throughout people's communications. MY biggest complaint in life right now is that out of all of the Dr.'s I see, no one is at the "helm" of it all so to speak. I have my Ph.D., which is a research degree, so I can get to a lot of information that most of my physicians do not have. So much is inter-related . I am losing energy whe it comes to informing my physicians what is going on and all of the related tangents which are involved in this mess of a body!

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