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

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@crackerjack

@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did you experience any other symptoms, or additional medical issues? My daughter is very ill, and just got out of the hospital because she had 2 blood clots in one leg, and 1 clot in each lung. Prior to her frming these blood clots, she's also had a history of frequent nose bleeds, brusing easily, and amenorrhea. Her hematologist acted as though he wasn't concerned about a blood disease as long as myself, her dad, or her grandparents didn't have one. But, it sounds like it could also be possible for me, and/or her dad to have had the gene, never known, and it have been passed along to her, is that corrrect? I'm considering being tested to be sure I didn't pass something like this to her, and then her possibly having passed it to the grandbabies too. As ill as she is, it's possible hers isn't hereditary, and is related to her medical issues, which I read that some types can be.It didn't sound like the hematologist was even going to test for any type of blood disease because none of her immediately family ever had an issue with one? She also has 3 children-all her pregnancies went well, except during her 2nd one her placenta tore. (but, thankfully, he made it, and is now a strong healthy 6 yr old). I, myself, was a very, very, high risk pregancy, and after years of trying to get pregnant my daughter is my little miracle baby. Any other info or suggestions you can offer is appreciated. Thank you.

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Replies to "@garlamba, @heidi2020, and any others who have has any of these types of blood disorders, did..."

Why aren’t they testing her to determine what her blood disorder is, so she can be prepared after subsequent pregnancies
or surgery?

@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.

I am so very sorry to hear about your daughter's illness. Praying for healing and better days ahead. As far as other symptoms, I can only recall my daughter having occasional nosebleeds over the years growing up. Early during her pregnancy, she had elevated cardiolipin antibodies, which indicated a possible issue with clotting and she was referred to a hematologist who diagnosed the elevated factor VIII. She has a homozygous (two copies) of the mthfr mutation c677t. Mthfr stands for methylene tetrahyrofolate reductase c677t; an enzyme involved in folate metabolism. After delivery of a healthy baby girl last September, she stayed on lovenox for several weeks. She has since followed up with the hematologist twice and her Factor VIII levels have been normal x two. He is therefore only keeping her on daily baby aspirin. As far as family genetic testing, it was recommended by primary care that her siblings be tested and that I get tested if I ever plan a major elective surgery. I have never had any clotting issues in my 64 years. Hope some of this is helpful.

i had symptoms, but none similar to that . nose bleeds and easy bruising is symptoms I have never heard of that would alert to blood clots, however , i’ve heard those coming from after starting treatment from blood clots (except the amenorrhea). my symptoms were fast heart rate my calves were really sore and swollen and then when I got my pulmonary embolism‘s I was very short of breath and had just pain.

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