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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katelyn56 | @katelyn56 | Apr 11 2:02pm

In reply to @loribmt "Katelyn, There are numerous research articles regarding Factor V and Factor Vlll blood clotting disorders. I..." + (show)

Hello Lori. I appreciate the information but there are tons of articles on factor VIII for hemophiliacs but none for hereditary ELEVATED Factor VIII blood CLOTTING disorder. It’s extremely rare. When you contact them they all say ohhhh yes we have patients like you but in fact they do not. She has been twice and yes she has the hereditary type. Her numbers are in the severe range at this moment. She lives in pain. No pain meds are given. She probably has 60 blood clots in her body right now They do not care!!! Period. Very very disgusted with CC too. 👎👎👎👎👎

katelyn56 | @katelyn56 | Apr 20 9:36am

Hello. I’m 46 and have hereditary elevated Factor VIII. I had pe 13 years ago. Now it’s back with a vengeance my number is 700 for clotting. Unfortunately I am Coumadin,eliquis, xarelto resistant. I’m on 2 lovenox per day and Plavix. I’ve had 3 surgeries on my left leg. Hoping to go in remission again. If I don’t I will die. Medical help is slim.they don’t care. Yes it’s 1 in a million. I’ve even been to the Cleveland clinic. I’m so sick. I hope you are fairing better

danielsolutions1 | @danielsolutions1 | Apr 27 1:42am

In reply to @katelyn56 "Hello. I’m 46 and have hereditary elevated Factor VIII. I had pe 13 years ago. Now..." + (show)

I’m sorry to hear this.
Currently I am waiting my next apt to see where I am at. My lower left leg is constant pain. And last Dr visit was good but unclear of what’s going on. I was informed possibility of another specialist.

Stay strong and stay positive always. Thank you for your reply. It truly helps.

I keep my hopes up and pray daily for advancements in blood related illnesses.

katelyn56 | @katelyn56 | Apr 27 9:24am

In reply to @danielsolutions1 "I’m sorry to hear this. Currently I am waiting my next apt to see where I..." + (show)

Omg. Finally someone!! TY. Actually I am mom advocating for my daughter who has it she is 46 too!! U fortunately things are worse. Her count is 700. Nothing is stopping it. She has clots in her left leg and she has been in so much pain. She is getting a left leg amputation on Monday. We r devastated I’m sorry you have it too. I’d rather have her alive but she feels otherwise. She has 2 boys and a granddaughter to live for. Please text me directly at any time. I am losing my mind right now. She is at the Cleveland clinic. Surgeon said the Dr thst did her past thrombectomy ruined her arteries and veins. Can’t save her leg. 😢😢😢. God bless thank you again

katelyn56 | @katelyn56 | Apr 27 9:27am

In reply to @danielsolutions1 "I’m sorry to hear this. Currently I am waiting my next apt to see where I..." + (show)

Omg. I reread she had a pe 13 years ago too. Her viii went in remission and came back with a vengeance. The research is so poor. Oh I forgot to say she is Coumadin, eliquis, xarelto resistant. She has been on lovenox for a year now. Doesn’t work either obviously.

carriebythesea | @carriebythesea | Aug 24 1:39pm

More to the story...
After my F8 was normal for a short while, it went back up - lasted noted at 160. We also tested D-dimer a few times, which was higher than normal both times. So, I went back on the Xarelto for a short time. I wasn't worried because I didn't seem to have a problem with it before.

Unfortunately, I developed some sort of bleeding problem which we're trying to investigate. In the meantime, I'm back off of the Xarelto which seems to have helped stop the spotting. Dr. doesn't want to have me on anything until we rule in/out other problems.

Colleen Young, Connect Director | @colleenyoung | Sep 6 8:57pm

In reply to @carriebythesea "More to the story... After my F8 was normal for a short while, it went back..." + (show)

@carriebythesea, how are you doing? Did you and your care team get to the bottom of the bleeding issues?

carriebythesea | @carriebythesea | Sep 6 10:54pm

In reply to @colleenyoung "@carriebythesea, how are you doing? Did you and your care team get to the bottom of..." + (show)

Hi Colleen,

We're still working on it. I'm not any anticoagulants right now until we know more about what's going on.

Part of it appears to be the aging process and I'm not taking hormone replacement because of clotting risk. Not doing so seems to be causing some other issues in my particular case.

My iron level is OK per tests last week, and the spotting is intermittent and less than when I was on the Xarelto.

Drs are looking for another underlying condition that is causing the problem, so I'll know more in about a month.

irene | @irenekw | Sep 8 10:38am

Hello Carie,
Have they tested her for Antiphospholipid Syndrome? It is an autoimmune disease that also causes clotting.
Irene

etb2 | @etb2 | Sep 9 5:55am

I'm so sorry to hear all of this...but how do you people find doctors to test for all of this?

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