John’s diagnoisis of idiopathic pulmonary fibrosis (usual interstitial pneumonitis) doesn’t have a lot of treatment options, but Dr. Indira, John’s pulmonary specialist, has him on a steriod (Prednisone). Apparently it has lots of side effects that mess up ones digestive system, so he’s taking a second pill to combat that effect.

Dr. Indira sounds optimistic that she can stop the deterioration of his lungs for a while. If she can halt the problem at this stage, he said he can live with the lung volume he has left. We’re hoping that such a remission would be long-lasting but you just don’t know.

He’ll return to her office in two weeks to see if there’s any improvement.

She also uses a second medication. She’ll wean him off Prednisone and onto the other med at the end of the two weeks. I guess the Prednisone is more powerful, but once the lungs become stabilized, she’ll switch him over to the other to avoid the side-effects of Prednisone.

I’ve joined a couple email lists that are support of people with idiopathic pulmonary fibrosis (usual interstitial pneumonitis) or their caregivers.

It sounds like we have a real fight against this disease on our hands.

John doesn’t want to talk about the possibile outcomes because he’s very hopeful that he can lead a long, productive life. I think that attitude is the only one which will help him at this point. We will NOT discuss it at this point, and there’ll be no hint that the prognosis is not good.

So if you know John, and if you have read scary stuff on line which would indicate otherwise, please DO NOT share it with him. Please be optimistic and realize that’s what will help him the most. If you wish to understand more, there is an article which describes his form of I.P.F. fairly concisely. http://netwellness.org.

I can’t believe that as many people die each year of pulmonary fibrosis as die from breast disease but no one knows about it.