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Wednesday, August 26, 2009

My recent medical journey

Nearly two weeks ago—on Friday morning, August 14—I went for my twice-a-year visit with my rheumatologist. Normally our conversation goes something like this:

Doctor: "How have you been doing?"
Me: "Pretty much about the same. Nothing new to report."
Doctor: "That's great. See you again in six months."

Now, that's a bit oversimplified, I'll admit, but it pretty much summarizes the extent of our semiannual visits over the past few years. I have been very fortunate that my autoimmune disorder has been a relatively mild version of scleroderma—primarily affecting my hands and feet, my esophagus, and my lungs—and has not been progressing significantly since it was first diagnosed in the early 1990s.

This time I decided to lay out everything I've been dealing with lately, whether or not the symptoms seemed to have any bearing on the disorder he's been seeing me for. I discussed with him the three main symptoms I've been dealing with lately: extremely painful feet, a sensation that I'm having a difficult time breathing coupled with a lingering pressure or tightness in my chest, and the episode of gout I experienced the previous week in Illinois.

He focused mostly on the breathing issue and said it could be heart disease (which in my case is most likely), pulmonary hypertension, or lung disease. He called my cardiologist's office and arranged a heart echo and then the lung center and arranged pulmonary function tests.

On Monday of this week I went for the echocardiogram and the pulmonary function tests. A part of the lung tests was an update on my diffusion capacity, a measure of how well gases are passing from the air sacs of the lungs into the bloodstream. The technician who performed the latter test told me that my lung diffusion capacity had decreased to 40 percent, down from the 46 percent the previous time it was tested. By way of perspective, it has hovered around 50 percent over the past decade or so.

After the tests on Monday, I returned to work for the rest of the day, exercised at the gym with my trainer, and in the evening went with Claudia to "Lucky Stiff," a play at Rodgers Memorial Theatre. Near the end of the play, without any prior warning, I blanked out for perhaps a few seconds, we're not sure how long, although enough for Claudia to notice there in the dark theater. She wondered if I had fallen asleep. I felt terrible as the play ended, so she drove us home. As we were returning home and after we were home, I had the sensation that I needed to throw up, although I cannot technically do that because of surgery I had many years ago to repair a hiatal hernia. But my body kept trying to throw up. A most unpleasant feeling.

On Tuesday morning I went to visit my cardiologist. I still felt crappy from whatever was going on the night before, so I decided not to go to work at all that day. The doctor reviewed with me the test results from the previous day. I do not have pulmonary hypertension, which is good news, but he did confirm the 40 percent diffusion capacity rate. I had been doing some research on pulmonary hypertension, ever since my rheumatologist mentioned it as a possibility, and I am glad, quite frankly, not to be going down that road.

My cardiologist then decided to interrogate the heart monitor that was implanted in my chest a little over a year ago. The previous evening, along about 9:13, which would have been when I passed out at the theater, my heart quit beating for a full 15 seconds. Several episodes since that one showed my heart skipping beats for 3 to 5 seconds at a time. That is a new concern. He hooked me up to an external Holter monitor that I was to wear for the next 24 hours and to record any unusual symptoms.

I returned the Holter monitor midday Wednesday. I was feeling a lot better, pretty much back to normal, but had also taken the day as sick leave from work. A week from Friday I go back to see my cardiologist, and I guess we will talk about what happens next. I may now need to have a pace maker implanted. Stay tuned for further developments.

And through all this, the bottoms of my feet still hurt.

1 comment:

Eliza said...

:( Poor bottoms of your feet

I love you Dad!