Biography

The first suspected diagnosis was by my primary care doc in Spring 2018, after several years of “crackles” showing up in my routine annual check-ups. The first pulmonologist confirmed it as IPF,  but then when I went into a heavy bronchitis episode later that year, I was told he didn’t want to see me until my next appointment in 3 months.  I decided he was way too not caring.

I then went to specialists at Mayo Pulmonary to confirm the diagnosis last summer and they suspected that it might be an allergic form of IP (treatable) and prescribed a course of Prednisone to confirm. But it turned out it was IPF after all.

I’m now seeing a new, highly recommended pulmonologist who recommended Ofev, but that turned out to be WAY over my budget – especially for a med that can only offer a low percentage of likely effectiveness at restraining the progress of the disease, and no chance of a cure.  Plus,  given the cost of the med in the United States, even with Medicare and supplemental insurance, compared to elsewhere in the world, suggests that BI may have gone way over its financial head in buying the patent rights, So I’ve been looking (cautiously) for an Indian source of cheaper meds. Then COVID hit – including India now – and I’m backing off the search.

Meanwhile, I have been feeling quite stable (but not a genius) and encouraged by some of PFN’s optimistic reports of promising new medications.

The forum looks like the best answer I could find for even a small sense of staying emotionally – and practically – ahead of this lousy disease! Turning 82 this year and happy for all the years I’ve already had but would welcome a few more!

Thanks, BioMed News, for all that you’re doing so well on behalf of rare diseases!