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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
I was diagnosed with HIGH Factor VIII (8) about 1 year ago after having a LL leg DVT and 3 pulmonary embolisms. I'm female, in my mid 50's. I had my first mid large pulmonary embolism at 42, but never found a reason, thought it was because of birth control pills (apparently there was no Factor VIII test at that time?) So when it happened again, even though I had an injury (fall) and then flew back to the US from Europe. they said they thought it was more than just that, as it happened before in my 40's, so they ran genetic blood tests and found I had HIGH factor VIII. I was started on Eliquis 5mg 2 x day (had a few side effects but not earth shattering) and after the appropriate amount of time have now been reduced to 2.5mg 2 x day with some of the side effects also reduced with the lesser dose.
First off, is there anyone else out there with this gene? It is SO hard to find a lot of quality information since they have two blood disorders one with low factor VIII and one with high factor VIII. I SO wish they would have names it something else as there is too much info about the other that drowns out all of the info on HIGH Factor VIII, I have had to go to medical journals and studies for the most part, not exactly patient friendly, but luckily I have some experience reading these things from my previous work.
My Hematologist said if I contract COVID-19 due to my over clotting, I will most certainly not survive. Has anyone else been told this? It is extremely sobering and quite life changing. I have not been to a store, with people, or anything since March 2nd. Will I ever be able to see my Mom again (who is quite elderly) or either of my adult children if I'm able to travel to where any of them live without being masked, outdoors and very socially distanced? Will I ever be able to hug them again (obviously once their is a vaccine, but I also know that may be quite a while off). Will I have to miss their weddings, birth of grandchildren, etc.... because the risk may be death? This also greatly effects my husband as he is staying in to the same degree to protect me.
I would like to know others experiences, if you have been told the same information as me, and just any sharing regarding this disease that you would like to share. Like what drugs you take, have you had any more events?
I'm doing everything I can to be healthy (losing weight, down 20 about 20 to go), I exercise every day, walking, running, and/or a cardio mix, but beyond that I'm not sure what else I can do to lessen my risk.
Anyway, looking forward to hearing if there are more of us out there. Thanks in advance, Heidi
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Hi Heidi,
I registered to post to reassure that you'll be OK.
I was dx'd with Elevated Factor 8 more than 20 years ago when I had a severe back injury. It was discovered when I was already in the hospital for said injury (partial paralysis due to swelling in the back). I was given an epidural and a day or two later the physical therapist came to my room to see how far I could walk. I took about two steps and down I went. I knew I was going to pass out but had no time to react. When I came to, they had called a code so I several emergency people around me. A traveling nurse insisted that I'd had a PE. Fortunately, the dr on my case listened and ordered chest x-rays which essentially showed multiple pulmonary emboli in my lungs.
They gave me lovenox shots which I continued with a home for several days and then went on to a blood thinner.
When I went to my first hematology appointment three months later, the dr. told me that my factor VIII level was the highest he'd ever seen for someone who survived. Long story short, it suspected that the trauma of injury kicked the factor VIII higher than my normal state which plenty elevated enough. I should also state that the test for elevated Factor VIII had just been developed about a year prior. Given my age at the time, they made me case study and my hospital system started making it a matter of routine to screen certain patients for blood factor issues as a result, though I personally have never met anyone else with it but apparently they did start identifying more people with factor issues.
I was told I'm one in a million (just like someone else who posted and also that the Elevated Factor VIII is genetic so I would have always had it but just didn't know it. That's the theory but we haven't been able to prove it through my parents so we wonder if it skipped a generation.
Anyway, twenty years on, I hardly think about it although I *totally* understand how you feel at the moment. I've been very active and it hasn't slowed me down at all. The only thing I do wish is that I'd known that you can safely have babies. They didn't know that then and my dr discourage me from trying to get pregnant as it is high risk. I was told I would have miscarried without treatment during pregnancy. Years later, I was told that it's manageable after all.
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1 ReactionI think at one time, they did think it was one in a million. That's what I was told when I was diagnosed 20 years ago. Hopefully, they had more current information now but my understanding is that it is still considered rare.
I haven't heard of a concern about surviving COVID with elevated factor VIII, either. I've had exposure but tested negative. No one seemed very concerned at that point. Prior to the COVID testing, it's suspected it was in our geographic region for months before shelter in place. Many of us strongly suspect we did have it at some point in time.
As for the vaccines, I wasn't given any guidance about what would be the safe thing to do although I called the drs. several times when the pharma company who makes one of them and also the anticoagulant that I take advised not to take it. That's where things stand for me. I'm reading up on the issue now.
@carriebythesea you are very kind to post. I have learned a lot since my early post that you are replying to about all of this and the pandemic. We obviously know much more now about covid than in the first several months. I'm now fully vaccinated (did not react and all ok) but still practice a safe lifestyle. Living life and all good so far!! Thanks again
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1 ReactionHello Heidi! I was just diagnosed with the high factor 8 as well after having pie’s following shoulder surgery and a mild stroke. Looks like they will prescribe me blood thinners too. It’s very new the test result. You posted a while ago. How are you doing? Have you found any other information? Hope you’re well.
Hello
Does living at altitude increase the risk of pulmonary embolisms? Or bpt? I had PEs following a surgery, and mild stroke. Now they tested for factor 8 and it’s 254% so I’m assuming that is a life sentence for blood thinners. Haven’t heard from doctor yet but received my result. Also will they do any testing to figure out why it is elevated? Thank you!
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1 ReactionHello, and welcome to Mayo Connect where we are a community of people living with a wide variety of conditions and diseases who share our journeys and try to help one another along the way. We are not medical professionals and don't give medical advice but we share our successes and failures.
These all sound like great questions for your doctor. Test results need to be interpreted in context with all of your other medical conditions and your history.
Do you have an appointment scheduled to go over the results and decidon next steps?
Sue
Thank you, I didn’t mean to ask for medical advice just curious about others experience with elevation. Also I can’t find much information on the internet about factor 8. I have an appointment in the coming weeks to review test results. Thank you for your reply!
That's fine - I just wanted you to know we can share our experiences, and answer some questions, but interpreting test results is best left to the pros. If it is causing you anxiety while you wait, can you call or email the doctor's office for a preliminary explanation?
Sue
Info on high factor VIII is hard to come by!