Does anybody on here have Hereditary elevated Factor VIII?

Posted by katelyn56 @katelyn56, Apr 20 8:48am

Body will not stop producing blood clots. They are everywhere. Number is almost to 700. Coumadin, eliquis, xarelto resistant. On lovenox 2x a day. Started on Plavix too. Started 13 years ago went into remission. This time is far worse. Have had 3 surgeries left leg. Can’t find anybody to help me ☹️. I’m going to die if I don’t. Please help

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

Lori, Volunteer Mentor | @loribmt | Apr 20 9:15am

Hello @katelyn56. I know you’re frightened and I’m so sorry you’re going through all of this. I’ve replied several times and given you information about other members who have Factor Vlll. I’ve also given you links to request an appointment with Mayo Clinic in hopes that their huge depth of knowledge and experiences with millions of patients would be able to give you the help you need. I’ve experienced this first hand from my outstanding hematologist oncologist and collaborative team at Mayo.
Click on this link which will take you to the Mayo Clinic’s site to request an appointment. http://mayocl.in/1mtmR63

You made reference last time that insurance might be an issue. There are instances when a disease is beyond the capability of local doctors and insurance will grant approval for an out of state visit to a specialty clinic such as Mayo. It takes a phone call to the insurance provider! It could really be worth your while to get a second opinion, to be seen at Mayo or try for a Tele-Health consult. You won’t know until you try!

Here the link a discussion with other members in Connect who have been diagnosed with High Factor VIII. You’ll meet @heidi2020 @garlamba @jenhaz

https://connect.mayoclinic.org/discussion/high-factor-viii-8-blood-clotting-disorder-and-impacts-to-lifecovid/

Who diagnosed the Vlll for you? This is a familial mutation. Does anyone else in your family have similar clotting incidences?

katelyn56 | @katelyn56 | Apr 20 9:28am

In reply to @loribmt "Hello @katelyn56. I know you’re frightened and I’m so sorry you’re going through all of this...." + (show)

This genetic disease is one out of a million. As I said before I do NOT have hemophilia. I have hypercoaguability. It’s like a run away freight train. I appreciate your comments. It does not address what I have. TY

katelyn56 | @katelyn56 | Apr 20 9:39am

In reply to @loribmt "Hello @katelyn56. I know you’re frightened and I’m so sorry you’re going through all of this...." + (show)

Diagnosed by two hematologist/oncologist. Very expensive genetic testing. Nobody else has it. The parents one or both carry the mutation. Neither parent ever had clotting disorders.

Lori, Volunteer Mentor | @loribmt | Apr 20 9:40am

In reply to @katelyn56 "This genetic disease is one out of a million. As I said before I do NOT..." + (show)

Katelyn, from what I’m reading in the discussion with @heidi2020, she has a story very similar to yours. She has high factor Vlll clotting disorder of hypercoaguability, not hemophilia. But since these cases are a bit rare and unique to the individual, what works for one person may not work for another. That’s why I am highly suggesting a 2nd opinion at Mayo Clinic. This is where people go who have run out of options.

katelyn56 | @katelyn56 | Apr 20 9:44am

Fortunately for her blood thinners work. They do not for me.

Lori, Volunteer Mentor | @loribmt | Apr 20 9:46am

In reply to @katelyn56 "Fortunately for her blood thinners work. They do not for me." + (show)

Right, each person’s history is different but the condition is similar. A deeper medical bench might give you a broader breadth of knowledge in possible treatments.

heidi2020 | @heidi2020 | Apr 20 12:00pm

In reply to @katelyn56 "Fortunately for her blood thinners work. They do not for me." + (show)

Hi @katelyn56
It is indeed scary especially when you don't know why the clots form. (Besides the gene). While you wait to see a specialist there are things you can do to give yourself better odds such as lose weight if you are overweight, stay active and hydrated, wear supportive stockings and the like, I wish I had a magic wand for you that could ease some of the anxiety surrounding this until you find some answers, but unfortunately I don't, since all the blood thinners aren't working for you. Mayo Clinic is staffed with incredibly wonderful doctors also the Cleveland clinic specializes in this area as well. I am fortunate to have a very good hematologist where I live now. I'm not sure where or what part of the country you live in but if you have access to top tier medical. Centers such as these that is the first place I would go getting in however you can virtually or in person. I overheard somebody talking about a new blood thinner clinical trial, but I have no idea what it was, but it may be an area you also should check into, clinical trials, as perhaps it is another resource where you may find some answers. Sometimes, I know it's weird to say, but finding a Doctor who finds your case interesting can also be helpful. Please be sure to also look and post on: https://www.stoptheclot.org/ you may find some valuable information there as well that could help you. Wishing you the very best and here if you need an ear. I just haven't been around much due to travel etc.

katelyn56 | @katelyn56 | Apr 20 12:11pm

In reply to @heidi2020 "Hi @katelyn56 It is indeed scary especially when you don't know why the clots form. (Besides..." + (show)

Hello. Yes of course I’ve tried all these things. I have seen a specialist at the Cleveland Clinic also I live 50 miles from there. They have no one like me. They’ve done NOTHING to help me. Nothing. I’ve lost all faith in the medical field.i give up. Thank you for the reply.

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