Month 24, part B
I saw my pulmonologist yesterday and he had a few interesting things to say. First of all, as soon as he saw me in the waiting room he said, “Well, you’re pink at least.” Every other time I saw him, he said I was cyanotic. I took their mini PFT (Pulmonary Function Test) and it was good. After examining me, he said there was no reason for me to have to come back, but that I could certainly call with any questions or concerns.
After I thanked him (again) for discovering that Dapsone was poisoning me (causing methemoglobinemia), he indicated he felt he should have figured it out sooner. He said when he did figure it out, he considered it somewhat of an emergency and that I needed to stop the drug immediately. Although he’s never seen this reaction to Dapsone, he has seen it as a reaction to other things like topical anesthetics and says he has seen it cause heart attacks. With the heart already struggling because of a shortage of oxygen in the blood from the methemoglobinemia, extra demands (like tennis for example) can be too much. He said that my exercising like that without having chest pains means that my heart is pretty healthy.
I’m guessing that he figured out the problem by thinking about the mechanics of normal presentations and my presentations of hypoxemia with relatively normal hemoglobin levels. I think normally the levels of cyanosis and hypoxemia that I was exhibiting would be associated with severe anemia (low hemoglobin counts), and since my Hgb was not extremely low, one might figure out that the hemoglobin was not able to transport oxygen sufficiently. This relatively simple connection might be why this doctor felt like he should have figured it out sooner.
Still feeling good,
Justin
After I thanked him (again) for discovering that Dapsone was poisoning me (causing methemoglobinemia), he indicated he felt he should have figured it out sooner. He said when he did figure it out, he considered it somewhat of an emergency and that I needed to stop the drug immediately. Although he’s never seen this reaction to Dapsone, he has seen it as a reaction to other things like topical anesthetics and says he has seen it cause heart attacks. With the heart already struggling because of a shortage of oxygen in the blood from the methemoglobinemia, extra demands (like tennis for example) can be too much. He said that my exercising like that without having chest pains means that my heart is pretty healthy.
I’m guessing that he figured out the problem by thinking about the mechanics of normal presentations and my presentations of hypoxemia with relatively normal hemoglobin levels. I think normally the levels of cyanosis and hypoxemia that I was exhibiting would be associated with severe anemia (low hemoglobin counts), and since my Hgb was not extremely low, one might figure out that the hemoglobin was not able to transport oxygen sufficiently. This relatively simple connection might be why this doctor felt like he should have figured it out sooner.
Still feeling good,
Justin
2 Comments:
Dear Justin,
It's so good to hear how well you're doing. I knew you could beat it.
Love,
Bruce
Dear Justin,
Here's a good sign: I haven't even thought to look at your blog in weeks, not since you felt so good after getting off most your meds. By now (8/16) you must be off the Prednisone and maybe the Acyclovir.
First punk and then pink - a good directions to be going.
Love,
Lisa
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