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

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@crackerjack

@heidi2020 , @moo1.
@ heidi2020-Thank you for all the excellent info. ou are so right on there being little info out there on High Factor VIII. I'm sorry your family won't get tested-I think a lot of people don't get tested because they are afraid that they'll have an issue with their insurance companies (especially, if they have it)-but since the laws changed and you can't be denied insurance because of preexisting conditions, etc. I wouldn't think that should be an issue any longer?

Should I be tested for both Factor VIII, and Factor V?

@moo Right now she is on blood thinners for at least the next year, and it's to my understanding that it's best to not be tested while on them? She is also currently in FTT from a medical condition that began a year ago, which has now triggered another autoimmune issue that is currently in full attack mode. So her doc may think the clots
were related to everything else she has going on since no one else had issues, and they very possibly could have been. That's why I thought it might be a good idea for me to be tested, just in case. Right now they're focusing on reversing the other problems she has by trying to keep her vits, electrolytyles, fluids, etc. as "normal" as possible, as often as possible, to prevent further damage, decline, or, God forbide, worse. They're also using biologics, iron infusions, oral meds-she takes daily oral chemo too as that's the only thing that in the past has helped the other severe medical issue she has go into remission. Her other issues causes her to not be a candidate for a feeding tube , so they're hoping that all the treatments combined will help get her back out of FTT, get her vits, mineral, fluids, etc back to a more consistently normal range, and allow her to eat without all the N/V she's been having. (She still has some test, and biopsys results out too from her hospital stay the week before).

The clots are just one more major set back in a large list of several other severe issues that she's already battling with. Were the clots Factor related, or medical condition related?- I don't know, but some of the possible Factor signs and symptoms might have been there long before her FTT, and blood clots-ie) the nose bleeds, easily bruised, placental abruption on pregancy #2, etc., so if it is Factor related we certainly need to know for sure for both her, and the grandbabies sakes. I hope you both have a wonderful rest of your day, and thank you.

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Replies to "@heidi2020 , @moo1. @ heidi2020-Thank you for all the excellent info. ou are so right on..."

@crackerjack ask your dr which tests and perhaps your daughters hematologist could advise also which ones based upon her condition. There are a bunch of different ones besides Factor VIII and Factor V. I would think they'd want to run the whole panel. I have no idea if your insurance will pay or not, you'd have to check with them. Yes, I think my family doesn't want the tests due to costs, I think my mom doesn't want to know as she'd feel guilty (I understand that some as a mother myself, but Id rather my kids know to help keep them safe).
Information is indeed sparse for Factor VIII. I have found some additional resources and also another group like this on another site as well https://www.stoptheclot.org/.
I hope your daughter is ok. Sometimes we feel so helpless and it's hard. Please keep us posted.

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