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

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

Colleen Young, Connect Director | @colleenyoung | Jul 9, 2020

Hi @heidi2020 and welcome to Mayo Clinic Connect. It's good that you stressed HIGH Factor VIII in all caps. I see what you mean that most available information is dedicated to deficiency rather than over-production. I hope that by starting this discussion, other members with high factor VIII will join in.

As for living with a chronic illness and COVID, we have many members who are in the same situation as you are, albeit with different conditions. I recommend following the COVID-19 group here: https://connect.mayoclinic.org/group/covid-19/

In particular, you may be interested in these discussions:
- Do pulmonary embolisms put you at higher risk for COVID19 ill effects? https://connect.mayoclinic.org/discussion/do-pulmonary-embolisms-put-you-at-higher-risk-for-covid19-ill-effects/
- I'm high-risk. How to stay safe when things start opening again? https://connect.mayoclinic.org/discussion/covig-19/

Heidi, what have you learned about factor VIII and aging? Do risks increase with age?

moo1 | @moo1 | Jul 11, 2020

My husband and daughter have been diagnosed with High Factor V. He was put on blood thinners after any surgeries he has had. My daughter, during
her pregnancies, also injected herself daily With a blood thinner and for a month post delivery and after a surgery! Since they were diagnosed several years ago, We haven’t, until your post, heard of High Factor VIII.

We are also “sheltering in place” since March 9th. The psychological damage of not seeing in person our children and grandchildren except on FaceTime, is in order to avoid Covid19 and the danger of having our lungs ravaged by blood clots. To add to our vulnerability, I am being treated for stage 4 metastatic Breast Cancer and my husband, a pancreatic cancer survivor! I hope others who post here will respond. Wishing you well during this difficult time! Moo1

amylydia57 | @amylydia57 | Jul 12, 2020

In reply to @colleenyoung "Hi @heidi2020 and welcome to Mayo Clinic Connect. It's good that you stressed HIGH Factor VIII..." + (show)

I have factor V Leiden but never heard of factor VIII.

debbiedefrain | @debbiedefrain | Jul 12, 2020

In reply to @amylydia57 "I have factor V Leiden but never heard of factor VIII." + (show)

I also have factor v Leiden and are we at higher risk?

moo1 | @moo1 | Jul 12, 2020

Amylydia and Debbie! Good question! Are the Leiden V carriers more vulnerable to Covid19 because of the known symptom of blood clots? Hopefully we’ll find out more about High Factor VIII vs Leiden Factor V!

heidi2020 | @heidi2020 | Jul 17, 2020

In reply to @amylydia57 "I have factor V Leiden but never heard of factor VIII." + (show)

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.

heidi2020 | @heidi2020 | Jul 17, 2020

Hi @amylydia57 and @debbiedefrain we are similar in that we probably have blood clots easier than others. I'll be honest I have not studied Factor V, but I'll look into it tomorrow. But if you do have blood clots, yes, you do not want to get exposed to Covid-19.

garlamba | @garlamba | Oct 29, 2020

My 30 year old daughter was recently diagnosed with this, elevated factor VIII. She just had a baby and is on lovenox injections. Needs to see the hematologist again in a few weeks regarding long term care. She has never had any clotting episodes. I've asked her to find out what her sister and brother should be screened for.

moo1 | @moo1 | Oct 29, 2020

Garlamba, my daughter also took Lovenox during and after delivery of her two children. She and my husband have Leiden 5 which is a genetic blood clotting disorder. Both took it during surgeries they each had. Which she will do if she has surgery or more babies! She should be tested to find out for the future. I assume you and or her Dad have it too! All mine have done well with Lovenox! Moo1

heidi2020 | @heidi2020 | Oct 30, 2020

In reply to @garlamba "My 30 year old daughter was recently diagnosed with this, elevated factor VIII. She just had..." + (show)

@garlamba Thanks for sharing your daughter's experience. My doctor said my daughter would have to be treated when having a baby too, but I have not yet gotten any details as she will be seeing her own specialist where she lives (she is not pregnant, but does plan to hopefully have children in the future) Nice to see you have been told similar as to what my hematologist here said. Thanks! If it helps, I never had any issues with either of my pregnancies (and I obviously have had this my whole life) just my two weird episodes in 40's and 50's. So if your daughter can stay fit and healthy as she ages, her chances will be less likely as well. If you learn anything new about this gene disorder if you will please keep me posted and I will you here as well. Thanks again!

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