Roadmaps

I was fairly young the first time I encountered a customized turn by turn map made for a specific trip.  The journey I now find myself on seems like one of those maps with only the first and last pages.

I know where I’m at today.

I know where I’ll end up.

All the turns in the middle are a mystery.  But it doesn’t have to be a complete mystery.

There are things I can do that can impact the outcome.  For this particular trip, I intend to make sure my vehicle is in as good of shape as I can get it.  It’s got some miles on it.  And some of those involved some rough use.  But, it’s never too late to start taking care of the machine.

Taking care of my body includes doing things that are outside of my control.  Even though the reality of my situation hasn’t really sunk all the way in, I feel compelled to seek out the best mechanics I can to ensure my engine is running as well as it can and to fix whatever is fixable.

So…

I found pulmonary specialists to help.  My first appointment was at Loyola University Hospital in Maywood IL.  I’ve discovered that what is certain is that I have Pulmonary Fibrosis.  It’s there.

The scaring in my lungs is visible on the CT images.  It’s also possible to see that the scaring is in relatively early stages.   Pulmonary Function tests have shown that I’m at approximately 70% of my total lung capacity.  80% – 100% is considered normal, so my results are in the abnormal range, but not terribly so.

Further testing was done at the Mayo Clinic in Rochester, MN.  It was a whirlwind of tests over course of one week, then a repeat trip for a lung biopsy a couple of weeks later.  Then, surgical pathology reports that required the culturing of samples in the lab for an appropriate period of time and other reagent testing resulting in a refinement of my diagnosis.

Yes.  I have Pulmonary Fibrosis.  But, I don’t have the type (Idiopathic – meaning of unknown source) that carries that dreaded prognosis of 3-5 years post diagnosis.  My Fibrosis is caused by Hypersensitivity Pneumonitis, a disease of the lungs in which your lungs become inflamed as an allergic reaction to inhaled dust, fungus, molds or chemicals.

I know.  The story isn’t complete.  What dust, fungus, molds, or chemicals was I exposed to and am I still being exposed?

It seems that is going to remain a mystery.  Why are my lungs chronically inflamed? Despite all the testing there is no answer.

I’m left to my own devices.  Logic seems to rule.  Do whatever can be done that might reduce inflammatory responses in the body.  My doctors are helping by prescribing a medication that is typically given to people who have just received an organ transplant and want to suppress the immune system response to reduce the chances of rejection.  Powerful medication to be sure.  But the theory is that suppression of my immune system might reduce the severity of the inflammatory response in my lungs which is an immune system response.  Makes sense.  Of course it makes even more sense to take an anti-biotic as well.  Just to be sure I can fight off infection that might occur because of a reduced immune system response.

Short of this medication therapy, what’s left?  Lose weight.  That certainly can’t hurt right?  And the science shows that people who carry excess weight also suffer more inflammatory diseases.

Okay.  I try with little success to lose some weight.  It’s hard to do without ramping up activity which is hard to do when you can’t breath well.  So, I started Pulmonary Rehab to try and strengthen my lungs ability to exchange gasses.  It’s really just exercise, but exercise that is done while using supplemental oxygen and being monitored for heart rate and O2 saturation under the watchful eyes of a handful of RN’s and/or respiratory therapists.

All these turns in my journey are being discovered as I travel along with a roadmap that clearly shows where I began and where I will end but leaves out all the details along the way.

It’s a crazy way to travel but a bit of an adventure at the same time!