new treatment, same as the old treatment

So having figured out what I had it was time to talk about treating it.  The treatment was to give me prednisone, a steriod, to see if it would knock down some of the possible inflamation in my lungs.  Of course prednisone just created havoc with my blood sugar, since I'm Type 2 diabetic.  So I'm having to take doses of insulin to get things half way stabilized.  After 30 days they decided that wasn't doing anything so they cut back the prednisone and combined that with imuran, an inti-rejection drug.  After another 30 days it became apparent that wasn't working also.  At this point in time I'm down to about 70% of my lung capacity.

It turns out that my niece is Scientific Director of Toxicology  for a major drug company, and is actually working of pulmonary fibrois.  According to her, what they gave me was cutting edge 20 years ago.  Unfortunately, no one has been able to come up with anything better.

Lions & Tigers & Doctors Oh My

In late July my family doctor said I should see a pulmonologist.  Okay, not knowing any I asked for a recommendation.   Not a problem, his nurse would call me with an appointment.  I was slightly not excited when the nurse told me my appointment was in late November.  Seems that between vacations and staffing issues that was the soonest they could see a new patient.

Well I'm not a very patient patient, so I set off to find a pulmonologist on my own.  After spending a morning making phone calls I finally managed to get an appointment with a new doctor doing her specialized residency training at the local university hospital.

Of course the first thing they want is for me to take another pulmonary function test.  Sitting in something the size of a phone booth, which is not very big for those of you you have never seen one, and forcing air through a tube is not a lot of fun.  But the doctor ordered it, so be it.

So my wife and I see the doctor.  Turns out I have something call pulmonary fibrois.  Even better, they call it idiopathic pulmonary fibrois.  Idiopathic being the wonderful medical term for, they don't have a freaking clue how I got this.

Pulmonary fibrois means the air sacs in my lungs are turning to scar tissue.  And even better news, there is no real cure.

How it began

It was almost 2 and a half years ago.  I had gone out to mow the grass, a mindless task that I actually enjoyed, for that very reason.  Normally no big deal, but this time when I finished it was all I could do to drag myself inside and collapse on the couch.  I was totally exhausted and out of breath.  Fortunately I had just scheduled a complete physical at my doctors.  Like a lot of men my age, Tim Russert's death was a wake up call.

During the physical I told the doctor about what happened mowing the grass.  He scheduled a pulmonary function test.  Sitting in a box like a telephone booth trying to breath out gasps of air, while not painful or embarrassing like some other tests, isn't much fun.  Especially when the tech keeps asking questions like, "Does the patient have any allergies?"  or "Did the patient ever spend much time on a farm?".  I have a name, I don't go by 'the patient'.  Not that he cared.

About a week later the doctor called and said my lung function was decreased and I needed to see a pulmonologist.  And the fun began.