What Do I Know?

Warning: This is going to make me sound like a mouthy know-it-all who has no respect for doctors or medicine. I'm sorry for that, because I'm not, really. At one time in my life -- 26 years ago, when my son was born and whisked away to a neonatal intensive care unit in another hospital -- I trusted doctors and nurses and technicians and machines and medicine as if they were God. I never questioned a thing. I wish I could have that kind of trust again. But having this condition myself has made me feel helpless in a way that I haven't since my baby was so sick. Plus, some things have happened -- you know, those annoying little mistakes we all make at work -- that have made me apprehensive about trusting my life to another human being, no matter how many medical degrees that person may have. Of course I trust God. I'm quite sure he's the one who's telling me to read and ask questions about everything. I intend no disrespect for the medical profession. This is just the way I am now.

Sarcoidosis: Let's break it down. Sarc = flesh, oid = like, and osis = diseased. So, if I understand Wikipedia's definition correctly, sarcoidosis is an ugly-sounding word for an ugly condition involving flesh-like, diseased growths called granulomas. (I think granulomas is a cute word, because it reminds me of granules, which reminds me of sugar.) These fleshy globs of death and decay (I'm paraphrasing now) most often appear in lungs and lymph nodes, but they can show up anywhere. I have them in my lungs, but I don't know how they got there, or how long they've been there.

Wikipedia says they sometimes clear up or go away "spontaneously." My experience has been that any doctor worth his diploma will want to prescribe prednisone, and he'll want to start with a pretty hefty dose, just to see if it works.

Prednisone: A drug -- a steroid -- used to treat a long list of conditions, including breathing problems. It reduces your immune system's response to various diseases. My mom took prednisone back in the 70's, when she was diagnosed with Hodgkins Disease. I remember hearing her rant to someone over the phone about how horrible that drug was -- Oy vey, all that damage to all your organs! (Okay, so Mom didn't actually talk like that, but I think we know where I got my ranting predisposition.) That was enough for me. At that moment, I made a conscious decision that I would live out the rest of my days in mortal fear of prednisone. (Did I mention that prednisone sometimes makes patients -- and their children -- think a little irrationally?)

Of course the list of side effects and precautions listed on the patient prescription information they give you with your pills is far too lengthy to quote here. But I bet if you can think of something that can go wrong, prednisone can make it happen. (So can getting older, but I'm glad I have prednisone to blame.) By far, my favorite sentence is the one that says, "Remember that your doctor has prescribed this medication because he has judged that the benefit to you is greater than the risk of side effects." Really? He gets to make that decision without any input from me?

The other one I love is "Some conditions may become worse when this drug is suddenly stopped." To me, that's the same as saying "You'll never get off this stuff." And yet the doctor is the one who gets to make the decision.

Pulmonary Fibrosis: The formation or development of excess fibrous connective tissue in the lungs, also described as "scarring of the lung." (Wikipedia again.) It can be a secondary effect of other diseases, like, say, sarcoidosis. But it can also appear without any known cause. That makes it idiopathic fibrosis. (Idiopathic is a word I don't like, because it makes it sound like you did something idiotic.) Seriously, though -- you can have scar tissue in your lungs without having a clue as to how it got there. You can't say that about scarring anywhere else on your body.

In my case, the scar tissue looks like it's been there longer than the sarcoidosis. They just can't tell for sure, but they're pretty sure a good shot of prednisone is worth a try. Wikipedia does say that there is no evidence that medications can significantly help this condition, but what the hell -- what's can a little prednisone gonna hurt? (Oh, yeah -- see above.)

I've known about all this stuff for about five years now. As I may have mentioned, I'm on prednisone. I also use oxygen when I sleep, and whenever I'm active. One way I have of knowing how I'm doing is having annual Pulmonary Function Tests. When we first started, my lung function was at 75 percent. In three years it dropped to 68 percent, a year later to 65 percent...That was last year. My most recent test showed that it's dropped to 45 percent. That's significant. I'm going to have to study harder for the next one, I guess.

I've had something of a love-hate relationship with my Dr. Pulmonologist since I first met him five years ago. Mostly I love him, and when I see him, it's always hard for me to remember how outraged I get when I'm unable to talk to him on the phone, or am punched in the face (because that's what it feels like) by office policies regarding who is allowed to inform patients of test results. Recently, overwhelmed by frustration, I unloaded on the innocent nurse at the other end of the phone line, knowing full well that when I was finished, I would fall all over myself apologizing.

The pictures decorating this post are Dr. Pulmonologist in his various incarnations as I've blogged about my issues in the past. I don't know if he's a really good doctor, but he's a really good person. I trust him as much as I can, and pray -- a lot. And thinking about that, this "condition" really could be the answer to a prayer, because if one of my kids had it, I know I'd be praying like crazy for God to take it away from them and give it to me!