Wednesday, December 31, 2008

Return to radiology

I'm closing down 2008 by getting all of my ducks in a row for a healthier 2009.

A buddy has already facilitated my first medical appointment of the new year: an MRI at 7:15 Friday morning. The last MRI left me a little rickety and I'm not eager to slide into another Easy-Bake Oven to be cooked with radiation for an hour. But my head and neck doctor and the team of neurologists want to see images of my tongue and jaw that only an MRI can produce, so the sooner I get that done for them, the better.

Who knows what surprises may be in store for me in MRI Imaging Center in the basement of Kaiser's Building G on Friday? The last time, a young blond woman positioned me into the tubular MRI gizmo and took a seat by the machine as I went inside. When I emerged from the tube an hour later, she had transmogrified into a burly black guy.

My buddy made the appointment for me after Kaiser called and left a message on my voice mail to call them back. Within rigor mortis setting in on my jaw, my vocabulary has been reduced to three words. It's a godsend to have someone in my life who is willing to field phone calls from Kaiser and make appointments for me.

I typically let calls on my cell go to voice mail, but when the phone rings at home, I often pick up. If I'm lucky, a telemarketer is calling and I can have a little fun by answering all of his or her questions by humming "Shave and a Haircut."

As I was writing this, Kaiser phoned to tell me that the results of my last MRI were negative. That is good news, but I'm hoping that the MRI coming up on Friday will produce some kind of clue about what's going on with me, and how it can be treated.

Tuesday, December 30, 2008

Back to neurology

Going in to the nerve study this morning that my neurologist ordered last week, I didn't know what to expect. Today was the fourth visit to Kaiser in seven days pursuing some kind of resolution of my malady, and as I sat on the crinkly white paper on the exam table, I wasn't banking on a miracle healer to walk through the door.

The first neurologist to come into the exam room, named Cordia, was amiable enough, and she asked the questions that I have become accustomed to answering as I work my way through the Kaiser system. I had many responses pre-written in my note pad, and scribbled responses to the questions that she posed that I had not anticipated.

Cordia's line of questioning was energetic –I was impressed. Then the door swung open again, and a second neurologist stepped inside to join us. She sat at the computer console and skimmed the notes and test results that have accumulated over the past month and a half, while tossing out questions of her own.

Then a third neurologist, Dr. Bruce Enos, entered and joined the others. By that time, his colleagues had asked me to step out of my business clothes and into the gown that was laying on the exam table.

Dr. Bruce was most interested in examining my tongue closely, and while I wasn't thrilled to see him whip a safety pin out of his pocket and poke my tongue with it, that simple exercise revealed something that I wish I had realized long before today: that the ride side of my tongue is numb to the sensation of a pinprick.

The appointment was extremely productive, I thought. The three neurologist asked a lot of questions that I had not heard before, and they each seemed determined to identify the cause of my problem –oh, why mince words? This "problem" has ballooned into a bona fide crisis.

The next steps are a second MRI, which unlike the MRI I had earlier this month, will zero in on my neck and mouth. There will also be a venogram, which is a test that has not been proposed to date.

At home tonight, I will begin taking two of my HIV meds in liquid form through the G-tube, and the remaining three crushed up and dropped through the tube. There are three Baggies of crushed meds on my coffee table, and two brand-new syringes to use for measuring the liquid doses. But during the day at the office today, I Googled "pill crusher" and discovered that all of the major drug stores sell devices to use for grinding down pills. I'll stop at Longs on Laurel Canyon on my way home and pick one up.

I should have realized that clubbing my pills like Bamm-Bamm to pound them into dust was a little screwy. After all, I'm not the first guy with AIDS to need to take meds through a G-tube.

Monday, December 29, 2008

Another day at the doc's

Today I had another appointment with Dr. Kurtis Birusingh, a head and neck surgeon.

I asked for this appointment after my Christmas Eve visit with Dr. Larry Rusheen, my neurologist. I asked Dr. Rusheen which doctor is best qualified to treat my swollen tongue, and he said that my tongue falls squarely under the head and neck department's jurisdiction. The day after Christmas, I went online to request an appointment with Dr. Birusingh, and I was given a slot on Jan. 13, two-and-a-half weeks away. Later that day, I unexpectedly found myself in the Emergency Room at Kaiser. The doctor treating me there worked some hocus-pocus and got that Jan. 13 head-and-neck appointment advanced to today.

Dr. Birusingh didn't have a lot of good news for me. But he did review the notes that my doctors at Kaiser have been compiling on my case, and he pointed out that Dr. Rusheen is exploring the possibility that my problems may be caused by myasthenia gravis. That's as close as I've come to hearing a possible diagnosis, but I'm keeping my expectations in check until the results of the blood tests return. Dr. Birusingh also showed me images of my brain from my recent MRI. He acknowledged that he doesn't know how to read brain images. He wanted to see if there MRI picked up any images of my tongue or jaw. It had not, so I'll be getting an MRI of that region of my head in the next week or so.

Dr. Birusingh also cautioned me to get to a hospital immediately if I have trouble breathing. I've been breathing exclusively through my nose, and if that should fail, a tracheotomy will be necessary.

I also got instructions from the pharmacist on taking my HIV meds through the G-tube. Two of my meds are in liquid formulations, so the only thing I need to worry about is making sure I measure the dosages accurately with the syringe. The three other meds, however, are in tablet form, and need to be crushed before being dropped down the G-tube. I put each tablet into a separate Baggie and took a few whacks at them with a hammer. There's a bright orange tablet, a blue one and a yellow one, but after being pounded down, they all look like white dust. After my neighbors spot me emptying Baggies of white power into a syringe, how long will it take for them to call the cops on me?

Tomorrow morning, I'm having nerve tests performed. I have no idea what to expect. But that's how I have begun each and every day since this odyssey began.

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.