Saturday, March 10, 2012

Spring 2012

We’re at our beloved campground trailer for 3 days. It’s clean up time. Vacuumed and shredded 15 bags of leaves for compost. Moved the old compost into flower beds. 70 degrees on Thursday, but the weather has turned to freezing overnight. Our old Holiday Rambler trailer is super-well insulated and cozy comfortable.

Summer can’t come too soon for us. Eager to continue the flower bed project - raising them and filling with good dirt and compost. Last summer was pretty much a wash-out. Our diary shows "bronchitis" starting in March. It lasted all year and just got worse; sick all summer. Now we know that my less-than-adequate Pulmonologist didn’t know what he was doing, treating me for COPD and Emphasema with bronchitis. Actually, I had none of these, which is why the treatment didn’t work, and I kept getting sicker. When I asked for a CAT scan and he couldn’t read it, I decided to change doctors in November.

Found a great new Pulmonologist, whose first conclusion was that I have neither COPD or Ephesema, but instead have Fibrosis. He also scheduled me for a biopsy in December and started me on oxygen. I was going rapidly downhill. My family (26) gathered for Thanksgiving to essentially "say goodbye". I planned my funeral, wrote the obituary, gave away my best books as Christmas gifts for everyone and basically prepared to move to my next life. Then the biopsy gave us new information and diagnosis. I have "Hypersensitivity Pneumonitis" which is an allergy to fungus and mold which creates the fiber in my lungs. The allergy can be treated with Prednisone, though the fiber that’s there will be permanent.

Meanwhile, I came down with a serious case of pneumonia, resulting in 15 days in the hospital with IV antibiotics. That finally cleared up and I was started on the Prednisone, a steroid. Now I feel fantastic. Lots of energy. I still need my oxygen if I’m active, but can do without it if I’m quiet. As nearly as I can tell, the future will hold continuing fibrosis, less dependence on oxygen, though with a basic vulnerability to lung infections. So it looks as if everyone is going to be stuck with me for awhile.

One huge question mark has been, "where was I exposed to mold or fungus?" I finally concluded that my CPAP (for sleep apnea) machine was always warm, wet, and dark - the perfect climate for mold and fungus to grow. Now I’m carefully washing it with bleach once a week, and using a light bleach in the water besides. If you know anyone who is using a CPAP machine, tip them off to this potential for trouble.

So, life continues, much better this year than last. I get periodic invitations to preach and continue to serve on the Committee on Ministry in our Presbytery. Tom applied for a seeing eye dog, but was turned down because he still sees too well to qualify. His eyes appear to have stabilized. He can see enough to walk carefully to avoid things that would cause him to trip. Walking our Cairn, "Mac" can be a challenge, diverting Tom’s attention from the pavement to Mac’s needs.

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