... do you find it? I have had this disease for approximately 20 yrs. I went in for hip surgery and when I woke up I was in the ICU due to excessive bleeding. My disease is maintained by using the drug DDADP. Also I have to stay away from aspirin and all NSAIDS.. Thank you for any additional information you have. bestpup
You need to have vitamin K shots about a month before surgery, then have your blood packed for a few days before the surgery. My brother had a tooth removed with minimum bleeding, a hernia fixed with that mesh, then the mesh removed in 2012. Before the doctors began doing that, he almost died.
My brother developed it after exposure to biological weapons. He was an officer that demanded to go in and repack a building with the contaminants at a military base. He was in a coma for over 3 weeks and bled from every pore -his eyes even bled.
He was diagnosed when he retired from the military. He lives a full life. He can't go diving as the germs set off the bends in a shallow dive.
He had a miserable toothache for over a year, because everyone was scared that he's bleed out. The military had him go to different hospitals. He lives overseas, and he had to fly to different countries, where they did nothing. He finally wrote me about it. I contacted one of my old doctors. My brother signed a medical release and his records were sent to my friend. My friend sent his recommendations to the dentist. The dentist began the K shots, then they packed his blood, and had blood on hand for transfusions. They didn't need to give him any transfusions for any of the procedures after they began the vitamin K and blood packing.
I know that you live with the fear of being in an accident, or something happening when you're away from your doctor or even alone. That's a special type of fear. It's different than the fear of dying from a cancer or heart attack, because a cancer patient has doctors that care for the patient, and everybody knows what to do for a heart attack. It makes a person feel more frail and vulnerable-out of control. My brother has had to go through this from being a robust career military officer to someone worried about a scratch or cut being lethal.
I have a rare cancer that I hope is in remission. Nobody knows what to do.If a cell goes into my lungs-I have about 8 months. I could have some there now. I don't know. So I sort of know how you feel, but not really. My brother had to stop scuba diving, and he used to be an International martial Arts judge in Tokyo. He represented the US and the American Military. Every spring-he and his wife went free to Tokyo. He had to quit, because a judge has to be able to go in and fight to show how it' is done. That's how he realized that something was wrong-bruises and excessive bleeding from practice. While we have the same fears caused by helplessness in our situations, our fears are quite different. Just ask your doctors about Vitamin K and blood packing before dental work and surgery. God bless you
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