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

Month 24

Yesterday was another regular clinic appointment. Again, my regular doctor was seeing inpatients in the hospital, so I saw yet another staff doctor whom I have seen before and liked.

My counts were as follows:

..... previous current normal
..... -------- ------- ---------
WBC.. 4.8 .... 6.0 ..... 4 – 11
Hgb.. 12.1 ... 13.6 ... 14 – 18
Plt.. 262 .... 273 ... 150 – 400

I’m very happy with these counts (as was the doctor). I can’t remember when my hemoglobin was that high – almost in the normal range. Plus my blood pressure was very good and my pulse ox was 95, which is a little low but not bad, and way better than it was reading a couple of months ago.

Prior to the appointment, my meds were down to 5 mg of Prednisone a day and Acyclovir (anti-viral) twice a day. I had been taking Protonix, but when I needed a new prescription for it, I called and asked if I needed to continue it and since I haven’t been having stomach problems, I was told I could discontinue it. Since I have been doing so well on the minimal amount of meds I have been taking, the doctor said I should cut back the Prednisone to 5 mg every other day for two weeks and then I can stop! While 5 mg is about how much corticosteroid the adrenal gland produces naturally, but since I’ve been ingesting it, the adrenal gland cuts back its production, so the theory is that every other day dosing will kind of “wake up” the adrenal gland gradually to start producing again. The doctor warned me that while weaning, I may have some days of feeling a bit punk. I forgot to check about whether I can stop the Acyclovir when I stop the Prednisone, but I’ll call and ask in 2 weeks when I do discontinue Prednisone. Apparently, the reason they are continuing with the anti-viral drug is that there is still a risk of a nasty virus causing something like shingles. It would be good to not get shingles, so I’m willing to continue that med until they say I’m relatively safe.

Now that I have gotten past the effects of the Dapsone poisoning, I realize that at the time, I didn’t know how bad it had been when I was suffering from methemoglobinemia, which was depriving me of oxygen. It was really bad, and now I’m a strong proponent of not only breathing, but of making sure one gets enough oxygen. I’ve been feeling great with the only real negatives being some cramping (stomach, back, and feet) which is a little worse than it was a short while ago, but not nearly as bad as it was a while before that, and taste still not back to normal. Now it looks like I could be two weeks away from being off meds altogether. Things couldn’t be much better and I want to figure out how to celebrate the discontinuation of meds, a milestone that I think relatively few bone marrow transplant survivors ever reach.

I have an appointment with the pulmonary specialist tomorrow, and while I don’t feel that I need his expertise anymore, I think it’s standard to follow up. Plus, it will give me another chance to express my appreciation to him for figuring that Dapsone was killing me. My next clinic appointment is for my 2 year bone marrow biopsy which I have scheduled for 8/30, with a follow up appointment on 9/11. Assuming everything looks good, I would guess that my clinic visits will become a lot less frequent, and that’s fine with me.

Feeling great and very optimistic about the future,
Justin