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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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@garlamba Thank you for the prayers and the info.
@garlamba I'm glad your daughter had the vaccine without incidence. I have now had my first shot (Pfizer) and I'm thankful I did not have an anaphylactic event. Shot number two at the beginning of April. Fingers crossed.
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1 ReactionI was just diagnosed with factor 8 today I’m devastated
also from what I found it doesn’t look like it’s as rare as we may think this article says it’s found in 11% of the adult population
How different are the clotting effects of Leiden Factor 5 versus 8! Factor Vlll ? Will the same dose of Lovenox work equally well for both types?
Hi @karaf8 , did you have some sort of episode (DVT or PE) and that's how you found out? I think it's normal to feel that it's life changing, and it is, but that said I'm in my mid 50's and I've had it my whole life but I just didn't know it. A lot depends on if you have other things going on also, to determine how much daily impact you may experience. I just wanted to post and say you can indeed have a happy and full life. I remember when I heard the news too, but there's lots you can do to minimize risks and that's what I'm trying to focus on. I figure I beat the odds twice (first time I was not treated long term as we didn't know I had the condition) andI'm still here. It's a gift to be alive and I'm determined to live life with that focus. Hang in there!
yes i had 5 dvt’s and two large burden bilateral PE’s. i guess “devastated” is a strong description. But it was upsetting. i’m feeling pretty good after treatment and doctor wants me on blood thinners for life , i’m more like having ptsd from my episode my hope was because they took me off the birth control pills would make my risk go back to normal. Knowing that i’m high risk regardless is a mental challenge
@moo1 i do not have Factor V so I have not studied this. You should speak with a doctor about which medications they would recommend for your conditions. There are so many factors to consider along with your medical history that I would recommend you reach out to a hematologist to answer your questions to find the best treatment for you.
@karaf8 it is a mental challenge especially in the beginning. It still gets to me sometimes too. You do have to modify some things you do while on blood thinners, or have "accepted risk" and do it anyway. You are reminding me I need to get more serious about losing the rest of my weight to be my healthiest me. The farther out I get from my DVT and PE's the easier it is to ignore the things I should be doing to increase my odds for the happiest and healthiest life. So thanks for that. It is a journey and the initial anxiety over hearing the diagnosis is a normal and natural feeling, whatever word is used to describe it. My other blood clotting board has a lot of discussion about the associated anxiety. Sometimes I take a break from it. It doesn't change the diagnosis, but I'm 15 years from my first DVT and PE (where I went all those years inbetween with no long term blood thinner but I did go off birth control) and I'm almost 2 years from my other DVT abs PE's where we discovered my High Factor VIII which they didn't have the test for the first time around, and so I am on blood thinners now for life. So hoping a more positive story helps as I know there is a lot of anxiety out there with those with our diagnosis. Wishing you the best in your journey!!
i had symptoms, but none similar to that . nose bleeds and easy bruising is symptoms I have never heard of that would alert to blood clots, however , i’ve heard those coming from after starting treatment from blood clots (except the amenorrhea). my symptoms were fast heart rate my calves were really sore and swollen and then when I got my pulmonary embolism‘s I was very short of breath and had just pain.
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