Just a comment: I received a lovely message from a reader who expressed how she wished she could find a doctor like my Dr. K. It is not the first time people have brought this to my attention. A woman I met on this blog who had a husband with HP said the same thing to me. In the end, they never found one but she offered insight that I had missed.
Dr. K.'s not a specialist in Interstitial Lung Diseases like mine but a highly respected one for the Cystic Fibrosis community. Her focus with that group of patients was to avoid infections. She was very clear with me that I was to avoid crowds of people so no movies, no airplanes, no trains, no cruise ships, no orchestra concerts, no opera, no plays, no church, no anywhere where people gather. I remember sitting in one of the support groups and everyone was sharing where they were flying for summer vacations. Everyone was flying. Everyone except me.
In the ILD Support Group, the one other person with HP used to fly to Hawaii a couple of times a year. He did not understand why Dr. K. would not allow me to fly. After one of his flights to Hawaii, his lungs collapsed and he eventually received new lungs. We met just two months post-transplant and he said that he so wished he had listened to my Dr. K. instead of his doctors. Sadly, he died before his first anniversary of the transplants.
Dr. K. also was ahead of every curve. Acid reflux? No, I said. Yes, she said. Tested. Yup! Big time! At every turn she has been right. She has also been very proactive with my care.
The insight that I had missed was that Dr. K. was an expert treating patients with CF and not ILDs. She constantly watches my immune system, treats infections quickly and tests. Lots of tests. It's sad, all my friends who had an ILD or Obstructive lung diseases in my rehab class are all dead and here I am, alive and well enough for transplants sixteen-years after she took over my case.
I believe I would be long dead without the trifecta of Dr. K. leading my care, excellent medications and pulmonary rehab.
Keep searching for your Dr. K.
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