Jean & Frank,
I'm glad that I found your post. It really does help to have someone who understands exactly what you are going through. Everyone here posting about ET has the disease in common, but how rare is it that two of us have Veterans linked to AO? Does he have any other medical issues that are related to exposure? My Dad also had diabetes. Everyone tried to tell us to avoid going to the VA, but they were the ones who were insisting something was wrong even after my Dad's regular doctor biopsied his lung and said everything was fine. What keeps me awake at night is the fact that these guys thought, "wow, I made it home alive" only to have to fight the war all over again years later. The very first thing my Dad said when he was diagnosed was that he was glad it was him and not me because he knew he was dying. He also said he was sorry because he knew it was his fault, that his illness caused mine. I was very angry that they put him in a position where he felt responsible for my ET because he did the right thing and went to Vietnam while his friends were heading north to Canada. I wish he didn't pass with that on his conscience. As far as your husband's ET goes, is there any way you can find out if his doctor at the VA is in contact with a hem/onc regarding his medication? You hit the nail on the head when you said they all want to cure him of the disease. As my doc says, that's where a lot of doctors go wrong with treating ET patients. She's not a big believer in using medications unless it's absolutely necessary. I've already been in the high risk range (over 2 millions platelets) and rather than giving me medication, she chose to keep a closer eye on me and watch out for symptoms of something else going on. All I've taken in the past 10 years is asprin because ET puts you at higher risk of heart attack or stroke. Please stay in touch and let me know how the VA appointment goes. Again, if there is anything at all I can do, don't hesitate to ask. If you just want to talk to someone who understands, you know where to find me!
Allison