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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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@etb2
Generally speaking the PCP or other specialists refer to a hematologist based on that ever symptoms are emerging. Are you having difficulty getting a referral?
I have an oncologist/hematologist who prescribed this testing. I didn't know about Mayo being involved till the Head Phlebotomist told me. I do know that it's going to be looked at by a Hematologist in Pittsburgh who specializes in rare blood diseases. And so it goes....everyone Have a Great Day!!;
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1 ReactionAh, I see. Mayo Clinic partners and networks with many health providers and organizations around the world.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
You might ask your provider about it. I’m continually amazed at the number and locations of the network.
Hoping all goes smoothly for you.
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1 ReactionHi Irene,
I believe so and ruled out a long time ago.
Carrie
Thank you all for your notes. It looks like the increase in my F8 and D=dimer are from increased inflammation caused by another issue. My hematologist picked it up and referred me to a gyn for procedure with biopsy. The results were mostly benign, with one inconclusive so I was then referred to gyn oncology. I had some kind of infection after the October procedure and now just able to schedule the next for another biopsy, which hopefully bring clarity to the results and treatment options. I'm taking the Xarelto and right now we imagine it's not worth even testing the F8 because of the inflammation and bleeding situation. It looks like the bleeding is caused by a hormonal shift with my aging process. I've never heard of such a thing before this happened to me, but I guess it happens.
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1 Reaction@heidi2020 I have high factor viii
@bearbait Welcome to Connect. You mentioned that you also have High Factor Vlll blood clotting disorder. Was this something recently diagnosed? Have you had issues with blood clots such as DVTs or pulmonary embolisms? Are you on any medications such as blood thinners to help manage symptoms?
Late to the game, but I just found this thread because of Heidi's name being @'d in a different thread, that I found during my yearly searches for anything new about Factor VIII Disease online. Hello, one-in-a-million people; I'm here too!
Dx'd in early 2008 after a years worth of too many TIAs, multiple head MRIs, and my neurologist finally admitting defeat and saying he was ordering panels of 25 rare blood disease tests to be done and shipped to a center in TX somewhere that did testing at that time. A few weeks later, he called me into his office and said, "Well, I'd read about this during medical school, but I've never met anyone with it in 25 years of practice!" and told me that day I've had it since birth, it explained the TIAs as well as many ER visits which were written off as "just anxiety" because all they did was a EKG. And thank goodness, he also told me what a stroke would feel like, so I'd know to call for help if I was having one, before he referred me to a hematologist. Good thing he did, because about 2 months later, I actually had that stroke & heart attack; two clots -- one to my brain and one to my heart. And my EKG was still wonderful.
I've never met another person with elevated Factor VIII and have had to explain the disease to every single medical professional no matter where I go, and they always hear Factor VIII and automatically think hemophilia. It's so ridiculously frustrating! So now, when I encounter someone my first words are "I have an exceedingly rare hyper coagulation disease that you've never heard of and you'll think it's something completely opposite because of its name". That's how I got all of them to take a beat and listen. I should trademark it. 😉
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1 ReactionOh, and I had COVID, and had it bad before the vaccines became available. Then because of that and probably adding in that Factor VIII and some other autoimmune diseases, I got Long COVID for four years. Fun, fun.
@ @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?