Over the ensuing weeks, I have become increasing irritated by the lack of support services for patients dealing with BOOP. For example, it was only by asking and trying out different therapies...and a little bit of trial and error, like the carrots, that I was able to keep my sanity and focus my energies during this treatment period.
Today, I called his office directly, leaving a message saying I had been responding well to therapy, but I had some questions. He called back about a half hour later.
After thanking him, I explained my dilemma. He directed me to the epler.com website and the Forum link to read more about how others were dealing with BOOP.
I specifically asked about dealing with prednisone. Dr. Epler made two crucial suggestions:
- Pulmonary rehab is needed for a 10-week period, three times a week. This needs to be arranged via a prescription from my doctor, via my health care system.
- A low saturated fat, low sugar diet with lots of vegetables and chicken.
Since I didn't agree with the low-sat fat suggestion, but I didn't waste Dr. Epler's valuable time with a discussion on this. I was just grateful that he found the time to speak with me. Thank you Dr. Epler.
Finally, the Forum page on Dr. Epler's website is a great find. There are many people suffering out there, and we need to connect.
From my stand point, I will set up a list of relevant posts so that readers of Dr. Epler's Forum can also refer to my experience.
I can't tell you how much I have enjoyed your blog. The pictures of prednisone and you make me feel much better. I agree that we need more support. So many doctors do not know enough about this RARE disease. I was told by the pulmonologist yesterday to be on prednisone for at least a year. I could not function without sleep so I am taking a low dose sleeping pill at night that really helps. Hang in there and I will continue to read your blogs as we walk through the course of B.O.O.P.
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is boop classified as idiopathic pulmonary fibrosis
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