Sunday, December 28, 2008

For 17 years, living with AIDS hasn't been that difficult for me. I've been lucky to always have good doctors in my corner, and access to medications to keep HIV under control.

In the second half of 2008, freaky stuff started to happen. Even though these problems may have no association with HIV, I've been spending a lot of time seeing doctors these days and trying to get to the bottom of what's going on.

The troubles began in spring. A few weeks before AIDS/LifeCycle 7, I had my teeth extracted; on the other side of ALC 7, I took possession of a set of dentures. While I loved my new smile, I had trouble talking clearly with the dentures, and I had them modified and even relined. I also began to notice that it was becoming difficult for me to swallow liquids and even soft foods. As weeks passed, the speech and swallowing problems got worse.

After several visits with the second dentist who treated me, he finally told me that my dentures were not the problem, so I made an appointment with my HIV doctor.

The last month has been harrowing. My weight dropped to 135, and my doctor told me that I need to have a G-tube implanted in my stomach for feeding. (Besides being unable to swallow, I began to notice that my tongue was swelling regularly.) Instead of taking food through my mouth or intravenously through a PICC line, I pour a formula called Isosource into a tube that leads directly to my stomach. I've been feeding through the G-tube for almost four weeks, and while I haven't added pounds, my weight has stopped dropping. This week, I'll begin taking my HIV meds in liquid formulations through the G-tube; I stopped taking my HIV meds in early December when getting the capsules down my throat became impossible.

In addition to the surgical procedure to install the G-tube, I've had appointments with a head and neck surgeon; I've had an MRI; I've been to a neurologist twice; and I've had appointments with my HIV doctor and the nutritionists on staff. The day after Christmas, I went to the emergency room when my tongue swelling became so severe that I couldn't close my mouth.

Two of my friends have told me that they envision a full recovery for me, but my doctors are not making promises like that. They say that they don't know what's causing my problems.

I'm starting this blog in order to document the course of this condition, and to keep friends and family members in the loop with the latest news.


  1. Hi Paul,
    I just found this in my junk email folder. I'll follow your progress here.
    Something tells me your neighbors won't think twice about the white powder.
    Thinking positive with you. Ed S.

  2. Hi Honey,
    You never fail to entertain me with your fabulous use of the English language. My heart goes out to you and I hope they get this all figured out soon. I send you lots of love and a gigantic HUG!!!
    Love, Cheryl