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Phil's Story

I changed doctors in 1994. I worked with Drs. Brady Allen and Rob Henderson in Dallas. These guys brought Duke and I through many touch-and-go situations. Up to this point, my experience with HIV was anecdotal - everything I knew came from someone else's experience. I had been HIV+ asymptomatic for almost eight years. In 1995, I developed my first OI. I was diagnosed with CMV in my small intestine after having diarrhoea for about six months (unresolved with most treatments). I got a double lumen Hickman catheter and began gancyclovirä infusions. It put the CMV in remission but didn't solve the diarrhoea problem. I finally lost 40 pounds in a little over two months. I couldn't keep anything down and the smell of cooking food was very nauseating. Duke nursed me at home for three weeks until I got so weak I finally called the doctor (Duke had been in touch with him all through this though I didn't know it). I was hospitalised and diagnosed with microsporidiasis. Brady had read about a medication available in Mexico called albendazole that, at the time, was not available in the US. The medication only works for about 20% of people who take it. Duke got some smuggled in and, in a last ditch effort, it was given to me. I almost died that evening but they pulled me through (our next door neighbour was not as lucky - don't trust the U.S. water treatment to get rid of these things). In a few months, I had put on about 15 pounds and was feeling much better. I got two years off for good behaviour with little happening health wise. This year I have had gallstones removed (while Duke was fighting his last battle in the same hospital), meningitis and AIDS-wasting syndrome (which in combination almost took me again), and a sepsis infection in my port, within a month of my relocation to Pittsburgh. So, I guess if you have to qualify, I've earned rank as a full-fledged "Person Living with AIDS".


I've learned a lot over the years. One of my AIDS mentors, Joey, gave me the straight skinny on hospital stays. ALWAYS have a container of candy in your room and offer it to all of the staff. It's a nice gesture and you are always sure to have someone stopping by to check on you. ALWAYS remember - your doctor is trying to help you. Your job is to help him or her do that. Don't be a doormat but don't be a demanding queen either. ALWAYS smile (when possible and appropriate) and talk to the staff. Ask them about their day. If they do a good job, tell them for cryin' out loud! Talk about their problems. Share a joke. Pay a complement. It will do you more good than it does them. And you will be remembered if you have to come back (and chances are you will).


Duke was a great source of knowledge and comfort to me. We talked about living, dying, pills, rashes, hopes, aches, dreams, pains - all the little parts of living with AIDS. He never whined or let his constant pain stand in his way of doing anything. Duke, Joey, Joel, and so many others have made my road smoother because of their courage, determination, guts, willingness to share, and their indomitable sense of humour. How do you ever repay gifts like these?

Above all, try to stay in the moment - don't live in the past or the future. It's tough to do but every time you get there, you get to truly live. For those of you who have recently been diagnosed or sero-converted, this is probably not a death sentence. Your life and its quality can be lengthened and improved as new treatments are discovered. Be optimistic. Celebrate your life. If you really look, you can find something to celebrate. I celebrated my being able to keep real food down after not eating for nearly two months. Go to DisneyWorld. You'll feel seven years old again. It will lengthen your years and brighten your life. Oh, and ride the "Tower of Terror". What a blast!

Story by Phil - Australia, 1999.


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