HIGH Factor VIII (8) Blood Clotting Disorder and Impacts to life/COVID

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

I’m 54 but I walk but I also mountain bike and ride once a week on a bmx track. Not the safest way to exercise with known cerebrovascular stenosis but I’m not just going to take it laying down. If I fall then I fell doing something I love. Thanks for your support, how about you?

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@heidi2020

I know High Factor VIII is very rare, that's why I was so hoping I'd find others here. Someone said one in a million, but I have not verified that statistic to know if it's true or not.

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See my blood test results
High factor 8 at 261 %
(That test comes even after being on blood thinners for 3 months which for me is concerning. See the doc again in a couple months.)
V factor negative
DVT has brought this diagnoses to me since there is no explanation as to why the DVT

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@dakotakid61

See my blood test results
High factor 8 at 261 %
(That test comes even after being on blood thinners for 3 months which for me is concerning. See the doc again in a couple months.)
V factor negative
DVT has brought this diagnoses to me since there is no explanation as to why the DVT

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Hi Dakotakid, when were you diagnosed? What treatment, if any, has been suggested?

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@colleenyoung

That must come as a relief, @mbell. Congrats on taking control of what you can control and making the factor 8 your motivation to live healthy. What kind of exercise do you like to do?

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Rebounding and riding bikes (mountain bike, fitness bike and bmx)

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Hi All,

I think I may have promised an update some time ago regarding COVID19 vaccination yes or no?

Before I post further comment, this is regarding only my situation and I'm not suggesting or advocating it for anyone else.

That said, I recently had my annual appointment and I was finally able to discuss my personal history with my doctor. The decision was no vaccine. I take Xarelto for F8 and it is also part of the protocol that they use here for COVID19 patients. The other more important reason is because of my past medical history and a new thought that I may have had an adverse reaction to treatment for my injury a long time ago. So, out of an abundance of curiosity, we decided to test the Factor VIII activity again which hasn't been done for a long, long time.

My best to one and all!

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