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High Factor VIII (8) Blood Clotting Disorder and its Impacts on life
Blood Cancers & Disorders | Last Active: Sep 10 9:49am | Replies (133)Comment receiving replies
@crackerjack i had only shortness of breath the first time. Nothing else. (They took me off the pill as they thought that was why the first time because I did not have any known risk factors. At that time I guess they didn't have the test for HIGH Factor VIII, they did run all of the other genetic ones at that time , but all were negative. So I walked around for 10 plus years after on no preventative meds. Then the second time I had terrible pain in my leg behind my knee but thought it was just strained. But then I had trouble breathing the next day. But I had zero of the "normal" symptoms. And since I had asthma I almost didn't go both times. I did however bruise easily and they thought it was or related to my low vitamin D. But that's the only other thing I had.
So, no one in my family had any known issues either. But here I was with only HIGH factor VIII but none of the other blood disorders once I was tested. Yes it's from one of my 2 parents. I unfortunately have passed it on to my kids. At least they know, so when my daughter has a baby they'll watch her like a hawk afterwards especially. Both are being monitored and of course if either have injuries or surgery they will be extra monitored and preventative measures may be used.
My father has already passed away and only my mother is still alive. She refuses to get the testing (no clue why I'm sure Medicare would pay) and none of my other family members have decided to get tested either. I cannot understand it personally. I'm presuming out of a large family some also have the gene.
So I HIGHLY recommend getting tested. We would not have known otherwise as all other tests were negative. I now am on blood thinners fir the rest of my life and have my levels tested regularly by my hematologist.
Wishing you the best!! And your daughter especially too.
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@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.