Thursday, November 17, 2016

OT:: The Diagnosis

The coming diagnosis, let's put it that way. My various physicians have me on a kind of diagnostic treadmill, checking off one thing after another ("Nope, not that!") and going on to the next. It took months, for example, to confirm I had rheumatoid arthritis and to come up with a treatment routine that seems to be working pretty consistently for joint pain and swelling.

They've checked me for cancer (multiple myeloma) -- so far no sign. Yay.

Now the question is what's wrong with my lung(s). Breathing problems and fatigue have been getting worse. I can feel the pressure of a "growth" in my lower right chest (this may be in the lung or it may be due to a hiatial hernia, more about which in a bit), and at times I can barely be active at all -- say walk for more than a few dozen yards, or even stand upright for more than a few minutes -- without becoming exhausted.

Hm. So what's going on? The pulmonary function test showed that everything was more or less normal, except... I had severely reduced lung capacity. I think it topped out at 38%. The pulmonologist declared confidently, "Welp, that because you have pulmonary fibrosis due to RA; your rheumatologist should treat it aggressively steroids." He added that I have emphysema, too, from smoking -- which I knew from years ago -- but that it was not severe (I think he called it "mild") and it was not a significant factor in my breathing problems.

My rheumatologist did not entirely agree. She thinks emphysema could be a bigger factor than the pulmonologist believes, and if that's so, it wouldn't be wise to treat me as if pulmonary fibrosis is the leading cause of my difficulty. She also said that if I had extensive pulmonary fibrosis due to RA, she would be obliged to treat that very differently than the treatment I've been receiving for joint pain and swelling. She didn't say how she would treat it differently, but only said she wanted me to go to the National Jewish Health in Denver for a thorough respiratory assessment and diagnosis.

I've been in contact with  them and they are working out appointment availability and which department to assign me to and so forth, but truth is, I'd rather not go -- not in the middle of winter anyway. There has been no snow so far; the weather hasn't even been particularly cold here in central New Mexico, or up in Denver. But that could -- probably will -- change. They were talking about a February appt but said they'd try to get me in sooner because I'm out of state. We'll see.

Meanwhile, I had a follow up CT scan last week. The results were posted Tuesday. I'm still digesting the findings. A lot of it is written in clinical jargon some of which I don't understand, but the upshot I gather is that the radiologist who thought the signs were ambiguous in May now thinks the signs are quite clear that I have pulmonary fibrosis in my right lung, that it has spread from the lower right lobe to the mid lobe, and that it is probably though not absolutely certainly due to RA. There is some mild to moderate emphysema particularly in the upper left lobe (which is essentially the same diagnosis I received in May and what I was told when I had a scan in 2010 due to one of my periodic bouts with pneumonia.)

So I do a little research with the Goggle and discover that pulmonary fibrosis is indeed one of the possible complications of RA, that it is irreversible, and as it spreads it becomes fatal. There is no treatment, at least none that can control or reverse the progress of the disease. The only things Medical Science can do are palliative. Oxygen, for example. Or a lung transplant. Which, due to my auto-immune condition (RA), would probably not be indicated.

Alrighty then.

I'm not in a tailspin about it, and I probably won't be. When I told Ms Ché what this situation was looking like, she was momentarily stunned, and then took the tack, as she always does, that this is just another challenge sent our way, and we'll get through it. No matter what. Bless her heart.

As far as I'm concerned, que sera sera. I'm not in any particular pain, thanks to the medications I've been taking for RA. While I'm conscious that there is something happening in my chest, it doesn't hurt at all, it's merely uncomfortable sometimes when I lie down. Fatigue is a real problem and is getting worse, but I have means to cope with that. (I'm old, I take naps. OK? ;-)

So in a lot of ways I feel extremely lucky, even if I don't have much longer before shuffling off this mortal coil. According to what I've seen in my research, unconfirmed by my physicians at this point, the prognosis is that I have perhaps months, perhaps years before the fibrosis makes it impossible for me to take in oxygen from my lungs -- and I die.


We all gotta go sometime, and in my view, passing from this plane is a part of the circle of life. It's one stage on a journey, and for all we know, it's not the last stage.

So. As things clarify, I may have somewhat more to say about The Journey.

In the meantime, be good to yourself and one another.

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