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DiscussionAnybody else have Factor V Leiden?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (66)Comment receiving replies
Replies to "@bmoregrl My daughter (45) has had two strokes. After numerous tests, there is no reason why..."
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@donnacsec
I’m sorry to hear your daughter suffered two strokes at a relatively young age. My first question: were these bleeding strokes called hemorrhagic strokes, or caused by clots traveling from her lungs or elsewhere to her brain? This matters because you can research the cause of the ones she had which occur from different causes which I won’t detail here, but make a big difference.
Factor V Leiden and Prothrombin are two of many factors that are now diagnosed because of genetic testing. In 2002 when I was prepping for hysterectomy surgery, I told the doctor my mother had many clots in her legs that were diagnosed as “phlebitis” following her hysterectomy surgery in the 1960’s at age 46. She had many episodes of phlebitis before she died. I was concerned that would happen to me so I mentioned it to the surgeon. He said we could send a blood sample for genetic testing which seemed miraculous at the time. Results showed I carried two blood mutations that both are factors that foster/cause clotting: Factor V Leiden and Prothrombin ( I believe is also called Factor 2.)
It is known that estrogen patches and other menopause hormone drugs that include estrogen can cause clotting. So, I was advised NOT to go that route. I didn’t.
Flash forward, after I fell on black ice and broke the large upper arm bone called the humerus bone straight through. During recovery I developed a blood clot in the upper elbow where the arm bends. It caused my hand to swell after the normal swelling after a break receded. My orthopedic doctor’s PA was suspicious and doubted it was a clot because that typically does not happen as a bone heals. I consulted my primary doc who sent me for a scan and yes, it was a blood clot. He put me on xarelto first but that didn’t agree with me. I then took Elloquis which I tolerated well. He kept me on it 3 months then took me off the drug.
About 2 years later the episode I described in the first message occurred. The Pulmonary Embolisms (PE) were everywhere in both lungs and in the saddle in between the lungs. I had no pain before it, just an episode of feeling “out of sorts” the night before, and was a bit more winded walking my dog up a hill I walk up regularly with no problem. I went to bed early, woke up to pee a few hours later and got dizzy standing up from the commode, and felt I may throw up. I woke up my husband to tell him I was feeling sick and to keep an eye on me. In the morning I went to pee and this time was so woozy standing up I grabbed the doorframe telling myself “I’m ok, I’m okay” but apparently then fainted into the hallway. That never happened so I thought I should go to the ER. Good thing… I would have probably died that morning if I hadn’t been diagnosed and admitted to the ICU. The pulmonologist said I should have stayed on Elloquis after the last clot… and I’m now on it for life.
Strokes run in my family, so I’m super careful about my diet, exercise and drugs I take.
I hope this is helpful.
Be well,
Jane