Living with a Chronic Condition

"I have to travel to make a living, and everytime I get on a plane, I put myself at extreme health risk. I've got to make sure I'm awake long enough to give whatever medical professional who is going to be treating me the appropriate information so that they don't kill me!"
~ Amye Leong

Traveling today is dangerous enough, but traveling with a chronic disease can be life-threatening. Amye Leong tells her story of one particular incident where the lack of medical information could have abruptly ended her life. �I've had rheumatoid arthritis (RA) for 26 years, since I was 18 years old. I've had to focus more energy on it than anything else I can remember."

"Two years ago I was based in Paris but happened to be in Washington, D.C., for a conference. I awoke one morning at the hotel vomiting and in such physical pain. I know arthritis pain but this was very different. I called the hotel concierge and the conference organizers, who all suggested that I get to an emergency room right away. I was scheduled to take my flight back to Paris but I was going into shock and was beginning to feel like I was going to pass out. Unfamiliar with the medial terrain of D.C., I had the conference organizer call a friend a National Institutes of Health. If they got me to a certain hospital, a physician friend would be waiting for me."

"I got into a cab at my hotel with another person from the conference. I was doubled over in extreme pain, throwing up and having a hard time focusing. We told the cab driver which hospital to take me to. He did not take us there, but of course, I didn't know that. I didn't know one hospital from another I was so out of it. I didn't even have my eyes open. He took us to the closest hospital because he thought I was going to die in the cab."

"We got to the ER and told them our doctor was waiting for us and they said, 'What are you talking about? You have to fill out these forms.' I was passing out. They threw me into a wheelchair and said to the woman with me, 'You have to fill out these forms if she can't.' So my conference organizer, who knows nothing about my medical background, and only knew that I had RA, had to keep me awake long enough so I could give her the information to fill out the form."

"Finally, she just started screaming and said, 'Can't you see this woman's in distress? She needs help!' She started screaming so loud that the triage nurse came out to find out what was going on. And she took one look at me and said, �Get her in here right away.' So it was a health professional that finally usurped the clerk who wanted me to fill out forms. She immediately got me into medical care. They instantly put me through tests and hospitalized me for a kidney stone that lodged itself in the worst possible spot."

"Then we found out we were in the wrong hospital all along. It was too late to be transferred, so we had to go through all kinds of, 'What's her medical history? What kinds of drugs is she taking?' I passed out cold at that time. Someone who only knew me as a speaker at a conference�did not know my medical history, did not know the drugs I was taking, only had a phone number of my mother who was not home�was responsible for telling them all this vital information. They had to wait until I was awake long enough, and they hoped by treating me they weren't going to do something to me that would be counter-indicated for the medications I was already on."

"When I woke up, I was in a hospital room with three doctors standing over me. They told me I had a kidney stone and needed surgery as soon as possible, and then I passed out cold again. The only thing I remember after that is someone saying, 'Stat, stat, get her into surgery.' When I woke up, it was a day and a half later. I had gone through surgery, which would normally have taken only an hour and a half, but because my blood levels were so low and my condition was unstable, I was in recovery for seven hours."

"When I finally got out of surgery, my friends who live in Washington were at the hospital. They are not my blood relatives so the hospital would not let them in to see me. We convinced the hospital that my friends who were there to help me were not necessarily blood family, but they were the closest thing to me at that time. My friends were the ones who knew my medical condition and treatments. I ended up spending 12 days in the hospital, most of it waiting for treatment because the doctors didn't have the information they needed."

"I can tell you the importance of having some kind of electronic record as someone with a chronic disease who faces all kinds of problems. I go through airports all the time and set off all kinds of alarms, because I've been through 16 surgeries. Twelve of those were joint replacements. I've been hospitalized for 298 days in my lifetime so far. But that has not stopped me from being a productive member of society."

"Chronic disease, unfortunately, is more mainstream than not. We are a highly mobile society. For people with chronic diseases who are trying to lead active lives, who travel as I do, we put our lives on the line every time we leave home. What do we do when we're not at home in our neighborhood medical care system? I have to travel to make a living, and every time I get on a plane, I put myself at extreme health risk. I've got to make sure I'm awake long enough to give whatever medical professional who is going to be treating me the appropriate information so that they don't kill me!"