My Vasculitis Story - next chapter

At this point I should thank my husband. Without the constant care and worry, I might not have survived the first year of my treatment. A lot of things happened including we had to leave Germany in the middle of my treatment. I ended up being medavac'd to the US during the start of the Iraqui war.

Because most of the soldiers and support personnel were getting ready for the Iraqui war, I got lost in the system. I was in one of the bases on the East coast waiting for a flight to Travis AFB, which never came. Eventually I was told that I would have to stay for at least three days or more. They were not interested in my health or my problems.

Fair enough.

My husband was frantically trying to find me and the personnel refused to even give me the phone. I didn't know what was happening. All I knew was that it was March and I was given a room with three other people with a broken window. I knew that I couldn't survive in that room another night. I had taken out all my clothes and wrapped them around me so that I could survive the cold. I had one thin blanket. The other blankets had been given to the injured soldiers on our flight. They had no more... None.

Finally, they offered to take me to a hotel on base. What I didn't know was that I would have to walk a distance to get food. However, it was the first shower that I had seen in two days. I agreed. Then they gave my husband a telephone number to that room. Before I even laid down... he was on the phone. He called a friend that lived not too far from the base... They rescued me and I slept in a real bed.

The next day I was on a plane to Las Vegas, Nevada to my brother's home.

What made this experience so noteworthy is because I was on 100 mg of prednisone. With that much prednisone in my system for over a month, I couldn't think or care for myself. I had been medavac'd so that I could be near nurses if I had a problem. Well it was a mistake.

There had been special provisions made for my kidney problems, but the nurses on the plane didn't have my food or provisions. The plane had a problem and we ended up going to England for repairs. Then we went to the U.S. An eighteen hour flight ended up being almost thirty hours. Once again there was no heater...

When the nurses found out that I had been rescued from their care, they told my husband that he could be in big trouble. He shot back with the information that I was a civilian and he was a retiree. And, because of my treatment he might take it up with the VA or other body... He didn't care which... and he was especially angry about the broken window.

By the way I could barely walk, but they wouldn't let me sleep during the day.

I did make it to my brother, who was astounded at the change in me. I was a walking skeleton. It was at this point that my family realized that I was sick. Really sick.

My husband came about a week later on a regular flight from Germany. In two days he had packed me up for my trip to Travis AFB. At this time I had had two IV transfusions of 1400 mg of cytoxan. I was taking 100 mg of prednisone a day. I was taking a multi-vitamin, high blood pressure medication, and taking shots for my red blood cells. Apparently the cytoxan was killing my RBC quickly. I was fatigued all the time and could barely walk or hold my head up. I was nauseous too.

My cognitive abilties had degraded rapidly. My husband said that I was as responsive as a turnip. I was not me. One thing he told me later is that he was so worried that I would die. When we reached the States, and I survived the treatment from the military nurses, he knew that I would survive.

I am too mean to die, yet.

(more to the story)