Progress stinks

Display at University of Washington pulmonary clinic

    The good news about Judy's pulmonary fibrosis is that it is progressing very slowly.  The bad news is that it is progressing.   As Judy's smart pulmonologist says, medical science knows almost nothing about the disease; what causes it, whether it is one disease or many, and especially not how to  stop the lungs from scarring.  They haven't even found a reliable way to slow down the scarring.  The doc said, "We might as well be in  the middle ages with this disease.  I could prescribe you a course of leeches."
    When Judy was diagnosed three and a half years ago, we began to live with the shock of a fatal prognosis. The fibrosis was a cloud over our lives, especially as we thought about the future, but Judy could continue her normal life at almost her normal pace.  Now the fatigue, shortness of breath and coughing limit her every day.  Taking a shower, for instance, requires  her to lie down with oxygen for a good length of time afterwards.  Pulmonary fibrosis is beginning to determine how each day will go.

Becky rides along with Judy's oxygen

     Judy's lungs have scarred to the point where she is operating with no reserves.  When the dog we were caring for got out of the fence, Judy knew she couldn't chase him.  She rushed next door to good neighbor Robert, who found the escape artist and brought him home.  Moving so fast snatched  Judy's breath away, and it took her several days to recover from the fatigue.
       Sometimes, when Judy  is knocked out by fatigue and needs oxygen fairly often,  there is no event we can pinpoint that triggered the low day.  Was it the weather?  The change in the weather?  The pollen?  Were the gods angry?  There are days when it is a triumph of the will for Judy to sit up in her recliner all day, when what she really wants is just to curl up in bed.  Other days, she can carry on with her music and her breakfasts and lunches with friends.  Some weeks she can do the grocery shopping (with good planning); other weeks it is a struggle.

Public art in Evanston

    In late  March, Judy got one cold and then another.  For five weeks she could barely move from her  chair.  She grew weaker and weaker, and had trouble eating.   She had lost five pounds by the time we went to Manzanita.  As we  sat outside the local grocery store, Judy was not succeeding in eating her favorite chicken.  Rob came by and, in his gentle paramedic way, suggested Ensure.  Drinking Ensure broke the impasse for Judy, and she began to build up to normal eating.  When we returned home, Judy finally saw her primary care doctor.  A week's worth of steroids gave Judy's once-outstanding immune system a boost, and she got over the decline.
    We both know that the time will come when we will live with some version of that decline.  But not yet, not yet.