Wednesday, October 6, 2010

Cystic fibrosis? Again? Really?

Last winter, when my Vitamin B12 deficiency came to light in and around the usual bouts of bronchitis, my primary care doctor (Dr. M) decided that I should be tested for Cystic Fibrosis. She told me to get in touch with my pulmonologist (Dr. D) and talk to him about getting the test done.

Long story short, it took me a month to get that appointment. He had a new secretary, unfortunately - the old one knew that Dr. D wanted patients like me with cronic, often critical medical problems to be worked in the week we called for anything other than the twice-yearly lung checkup. That left me with a month of time to stew.

I've joked that I'm addicted to the internet, that I've got an "interwebs graft into my thalamus" and that I half live in the online world. While it has its downsides, I am also very comfortable and competent at finding good, reliable information on the internet, fast. Google and I are tight, you know? Like a good patient, the first thing I did when I got home from seeing Dr. M was to head over to MedLinePlus (a website run by the NIH) to find out more about this disease she wanted to test me for.

As I scrolled through the page, I learned. I saw lists of symptoms, treatments, causes, and mechanisms. I saw that yes, I did show a few of those warning signs (phlegmy lungs, frequent lung infections, vitamin/mineral deficiencies). Then, I reached the part about  median lifespan.


Forty years old.

That was the middle-of-the-road time of death of patients with cystic fibrosis. I was 22. I had just decided to go to medical school. According to this, I could croak after about 5 years in practice. I could already be over halfway done with my life, and finished with the "healthy" phase thereof.

I had never, before or since, feared for my life. Ever, for any reason. In that moment, though, I looked into the terrifying abyss, and a small part of me screamed and jibbered in fear. The rest of me was just struck dumb with shock.

In retrospect, I'm amazed that I didn't go into an anxiety attack. Instead, I turned back to my trusty internet. Further digging around showed that there was a direct correlation between the age of onset of cystic fibrosis and lifespan; over 70% of patients are diagnosed by age two, skewing the median way, way down. If I did have cystic fibrosis, then not showing any symptoms until I was in my early twenties meant that I had a very, very good chance at a longer, moderately healthy life. I probably wouldn't be hitting the usual 90-100 and healthy that women in my family often reach, but I should be able to enjoy my retirement.

This was reassuring to some degree, but seriously? I was fucking terrified. I was just told that my doctor wanted to test me for an incurable disease with a MEDIAN LIFESPAN OF 40. True to form, I buried myself in my studies and flurries of work to get stuff done while I waited for my appointment with Dr. D. I tried not to think about the test, and when I did, I reminded myself of all the information I had found. I made me feel better while I was actively thinking about this information, but when I moved on to other things, it stewed in the back of my mind.

Finally, the day came to see Dr. D. I arranged for someone to cover my hours in the lab so I could take the morning off, and off I went. After talking to me and hearing what Dr. M asked me to tell him, my pulmonologist told me flat out that there was no way in hell that my problem was cystic fibrosis. It just didn't fit. (he also said that I would have been tested in infancy; I later learned that no, I wasn't, I was born in an area where that test wasn't part of the standard infant battery) He talked for a moment about why such a suggestion was way out in left field, and gave me his hypothesis for what was wrong with me, explained scientist to scientist. (Have I mentioned how much I love the respect this man gives me?) He told me that the one and ONLY reason I might possibly get the cystic fibrosis test was if it would make me feel better. A very proactive, often aggressively treating doctor told me that it would be a waste of money to get this test. I left his office feeling endlessly relieved, and didn't think about it again for months except to laugh over it with friends.

Fast forward to this Monday. I've just been diagnosed by Dr. M with my first case of bronchitis of the winter. We had been hoping that treating my Vitamin B12 deficiency would make my immune system strong enough to stave off these recurring lung problems. Again she says that she thinks I should be tested for cystic fibrosis. I spent the next ten minutes trying to relay, though my sickness-induced haze, that Dr. D had decided it was completely unnecessary. Dr. M, my primary, decided that I really do need to get tested for cystic fibrosis. She wrote me a script, and said "Get thee to a LabCorp!" (ok, maybe not quite like that, but I can have a wee bit of poetic license, can't I?)

So here I am, sitting with this prescription for testing for a genetic disorder of the lungs that a lung doctor says I don't need to be tested for. Last time, I was terrified. This time, I'm just frustrated and slightly angry. I feel like I'm being jerked around. I feel like my primary, Dr. M, is just grasping at straws. She's a wonderful, sweet woman who cares deeply about her patients (too deeply, perhaps). She has been truly hurt watching me suffer through joint and back pain she couldn't cure, nutrient deficiencies that shouldn't be there, acid reflux caused in part by her treatments for the former, and endless attacks of debilitating bronchitis shredding my lungs to mincemeat. The poor woman was hurting from watching me suffer and not being able to cure any of it. Treating my vitamin B12 deficiency really was a bit of a Hail Mary pass, as it were, because my numbers were borderline. Part of me wonders if she has run out of ideas and is continuing to grasp at straws, desperately hoping that something she does will show us the answers.

I'm tired of it. I'm tired of being a pincushion once a month as we do test after test trying to figure out what's wrong. I'm tired of treatments that don't work. I'm tired of being told that I'm too young to have these problems. I'm tired of not knowing what's wrong with me. I'm sick and tired of being sick and tired.

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