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Factor V Leiden and MTHFR mutations-Blood clots in femoral artery
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. 🙂
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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?
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!
Susan! Your last sentence is very frightening to me. My husband died in 2018 from Multiple Symptom Atrophy. He went to doctor after doctor for issues. I feared he had Parkinson's Disease which my mother lived with for many years. A well-respected neurologist (hahaha) said no. He was told he had COPD and put on inhalers. After consulting a pulmonary doctor and passing the tests with flying colors, he was asked "WHO TOLD YOU THAT YOU HAVE COPD?" His blood pressure would drop leaving him unable to stand. I would rush him to the ER and they would give him IV's and he would perk right up. We would come home and then again, another spell would occur. Long story short, a hospitalist called me at home and we went over all my husband had been experiencing and his words were "We are going to get to the bottom of this!" He called in a hospitalist neurologist and he knew which test to perform and his diagnosis was terminal. And looking up the symptoms of MSA, my husband had them all. He was going to a multitude of physicians and yet they did not contact one another to compare notes. I feel bitterness and confusion and why they did not do so. Though there is no known cure, his decline and death has left me with bewilderment of the medical community!
Hi, I'm new here and just stumbled across this site on accident. I'm currently 39yrs old. I also have Factor V Leiden and was diagnosed in 2013 (at 27 yrs old) after realizing from the 2nd hospital I went to Emergency department found out I had pulmonary embolisms in both lungs and a nice not so nice stay in the ICU. Jump down the road of horribleness to 2017-2018 when my 3rd hematologist/oncologist found out when I made them retest me that I not only had Factor V Leiden but also MTHFR..... Yay ! Not so much. He was a Dr of 50+yrs went to prestige schools and when I asked more about this new disorder he told me he in all his years of being in the medical field and a Great Doctor (miss him he retired,best doctor I've had in the last 11yrs) he said he's NEVER had a patient or come across a patient with both Factor V Leiden mutation and MTHFR disorder which I have. So it's been extremely scary almost dying at 27 with 3 small young kids at that time, to living with all types of symptoms and issues after that in which the doctors don't really seem to be wanting to solve or help and learning I have two dangerous blood issues....... I'm grateful though I didn't pass this on to my children the first thing I did was get them tested once I was told Factor V Leiden is a hereditary thing ! Although my doctor always keep saying it's hereditary and I had to get it from one of my parents, my parents got tested for me and for their health safety after my situation and neither have the Factor V Leiden mutation....🤔 They are absolutely my biological parents and the doctors keep saying the same thing no one of them have it, that's how I had to of gotten it..... 🤦🏼♀️🤷🏼♀️ but they don't 🙅🏼♀️& not only that my 3 full siblings & half sibling all negative also and my 3 children all negative and some nieces and nephews negative.... Plus no history in the family of anyone else having it still to this day..... I can't wrap my head around it. Anyways, I can go on forever but that's a quick version of my story living with the Factor V Leiden mutation and the MTHFR disorder.... Also get tingling fingers/hands/arms/toes/feet/legs and they always go numb at least daily & swelling in my feet/ankles/legs constantly. Even when I'm up and down making sure to keep the blood flowing to prevent clots.... No explanation from doctors on that either or need to try solving if you ask me they brush it off even though I've mentioned it repeatedly for the last 10yrs.