High Factor VIII (8) Blood Clotting Disorder and its Impacts on life

hello.
my name is Danny.
I have been experiencing certain health related issues for some time throughout my life. kidney stones and sleep apnea to name a few.
I was admitted recently into NCH hospital for pain. I asked the nurses to check for DVT as my mother had suffered one herself in her life and at that time, I was not informed she was factoring 8 positives. When I was admitted, the first shot of heparin in the stomach that they give to everyone cleared up all the sharp spiking pains that I have had constantly with no diagnosis. only nurses and doctors highly agitated with me. every time, I have had to emotionally explain to these health care professionals that I was there for care not drugs.
I recently had left leg surgery and experienced a DVT in my calf area. I don't know how it occurred, I was told surgery only took 8 minutes for meniscus repair, but I have questions in this regard as the operative report was filled out 2 hours before surgery took place. if you are unaware, an operative report should be filled out while surgery is happening or right after for accuracies of what occurred. I recommend asking that all your surgeries be taped for now on. Seriously. I awoke violently throwing up upon waking me up. I feel as if the anesthesia was too strong for that period of time, but I am no doctor. upon discharge I was taken out to my ride with IV still in my arm. shocking right? it gets better. when I called the hospital and spoke to the patient care "specialist" and explained the instance, I was told this "Mr. H. I guess it's a good thing you're not an intravenous user now, isn't it?"
Here's the funny thing. I understand factor 8 and they didn't even know what it was. I was ridiculed for informing them or asking them to understand. i understood from reading articles in search for answers for YEARS, that my wounds from working as an electrician doing very hard labor healed very slowly. at times, it took up to a year before the wound would completely heal leaving scars. The hospitals, Drs, nurses, and office staff was under the false impression that I was a user. this hurt and still does. I have been escorted out of hospitals for asking them to take it a step further and that something was occurring tome. again. police called, security escorted, male nurses and Ent showing me the door for asking them to be healthcare workers. yes. all of them laughed at me as I painfully walked to my car each time. thousands of dollars in visits for no answers. It is very aggravating.
They started me on 10MG twice a day (insurance only covers 10mg per day). I was feeling exceptional from this point until reduced to 5mg and started to experience the prickling pains in my back again. I am in for factor 8 testing. I suffered something during the clot that Drs seem to be turning away from. A pop and loud crack which dropped me to ground was a severely painful occurrence. since then, from my knee to the junction of veins just under calf have been very painful at times. now my Apts are spread out and I still am in pain with very brief answers.

I see a therapist twice a week to help with emotional stress, paranoias, and fear of doctors due to factor 8 antigen testing that is reactively very new. I am sorry I am irritable at times, however, if you have ever had the embolism as I did and that you stated, everyone would want to know more and then, possibly we would see the commercials discussing the treatment and the rarity of the disease. I would sign up to be the poster boy to advocate this completely. I would scream loud in efforts to advance healthcare.
this is a small portion. I have been through a lot with doctors. If a Heathcare provider from Mayo would like to speak to me. please feel free to reach out.

@danielsolutions1, oh my. Your experiences with doctors and their misunderstanding and ridicule must be traumitizing. I can't imagine. I applaud you that, despite all your experiences, you remain dedicated to advocate and raise awareness of Factor VIII and blood clotting disorders in general and specifically to medical professionals.

Please note that I've removed your personal email address. Mayo Clinic Connect is a public forum. If you wish to connect privately with someone, it is better to use the secure private message function.

Terrified but working with my doctors instead of showing the emotion. It takes time. We will get there by talking. Doctors, scientists, innovation, and determinations are increasingly getting better and advanced.
If we continue to talk with our providers, it will better help us. I am happy to be working with them now. And appreciate their assistance.

My 52 y/o son had a middle cerebral artery syndrome (t.i.a.) 7 years ago attributed to transient factor 8 elevations (400%) which returned to normal (82%) in a few months. Work-up discovered a patent foramen ovale ( p.f.o.), no murmurs or cardiopulmonary symptoms.
He’s been on Coumadin ever since, no residual neurological symptoms and stable prothrombin times. He’s considering repair of the pfo,fully understanding its risks and that anticoagulation will still be necessary since the cause of the transient factor 8 elevation event remains unclear. Repair of the pfo should prevent another cerebral event since he’s never had atrial fibrillation/flutter and has no other risk factors for emboli except history of hypercoagulopathy, ?idiopathic.

Hi @sherryjohn, has your son decided to proceed with the patent foramen ovale (PFO) surgery to close the hole. Is he in consultation with Mayo Clinic cardiovascular experts? (if you don't mind my asking)

I believe he has an appointment with cardiac surgery (Kaiser) sometime in November.

Hi, I was diagnosed with high factor 8 2 years ago at the age of 25. I go in for annual blood screenings and take low dose blood thinners every day. I was originally told a higher dose thinner would be better, but due to potential complications with future pregnancies I declined that option. I also finding it really challenging to find information or support groups since it is a relatively new test/diagnosis.

Hi All,

I hope this post finds you all doing well.

I promised some time ago to let you know what happened with my next F8 results. I just got new results about a week ago and I'm still processing the information. After 20+ years of having elevated F8 (original high point well over 400 with an incident of PE's, my results are now in the middle of normal range.

The next consideration is whether to stop the medication. To rule out the presence of clotting activity, I will have Doppler scans next week.

Ten years in, we stopped testing F8 since although it had come down some, it was still significantly elevated. We tested again mid-pandemic on a lark. Given the latest results, I suppose it could even come down a little bit more.

My doctor's current opinion is that this result indicates that the cause in my case was *not* genetic after all, as he was able to reasonably state a year and half ago that it could be normal at the next appointment. It was an educated guess.

Probably this brings up more questions than answers, but since I promised to share this with you so that we could all try to get a better understanding, I do hope that the information will help someone else.

I'm honestly not quite sure what to think.

Best wishes,

Carrie

Hi Lauren,

I was originally told that I would miscarry if I got pregnant. As more information became available over the years, other women were able to have successful pregnancies as long as they were properly managed so it's safe for both mom and baby.

I truly hope that you will get the opportunity.

Best wishes,

Carrie

That is good information to know for women trying to conceive. Are you currently planning a family or are you being prepared for possibilities in the future?