High Factor VIII (8) Blood Clotting Disorder and its Impacts on life

Posted by heidi2020 @heidi2020, Jul 9, 2020

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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Profile picture for Lori, Volunteer Mentor @loribmt

@ @starbabyoh Welcome to Connect…and the rare Factor Vlll Deficiency disorder club. ☺️ I’m so happy you followed this thread posted by @heidi2020 about her involvement with Factor Vlll deficiency. Knowing you’re not alone in the world with this disease can bring some validation and sense of comfort for you,

You’ve had quite an epic saga with this disease! Thank heaven’s you had an astute doctor who ran that rare blood panel to get to the bottom of your complex issues!
What treatments are you on now to prevent strokes?

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@loribmt well first of all, as I (and probably Heidi) always have to correct medical professionals, it is NOT Factor VIII *deficiency*... That would be no clotting and result in hemophilia, which isn't rare. We have the global opposite - hyper coagulation of Factor VIII. It would be wonderful if there was an official name for it (and believe me, I've asked my hematologist to make one up!) but no, we have to spell it out for everyone while they're saying (just like your reply) "Oh! Factor VIII deficiency disorder". It's frustrating to no end.

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