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Pulmonary Fibrosis Support Groups: Have They Proved Beneficial?

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Dyane shares how joining a pulmonary fibrosis support group has provided her a community of people with the same condition who understand what she is experiencing.

I felt alone until I discovered the breast support group. There aren’t that many people that I know of in Phoenix alone. There’s a couple that have pulmonary fibrosis, and because pulmonary fibrosis is so different from COPD it’s hard to find people who understand what it’s like.

The people on the support group get it. We all understand what each other is going through. When we talk about trouble with oxygen or when we talk about the cough people with pulmonary fibrosis seem to have this dry unproductive cough and we talk about, “Well, what worked for you? What did you take? I am having a bad day because the idiots at the doctor’s office don’t understand what I am talking about.”

We share our lives; we talk about our kids; we talk about how this crappy disease prevents us from being the grandmothers that we wanted to be. I have a 2-year-old granddaughter and I want to live long enough that she can remember me. And so, we all get it.

It is so, it is just so wonderful to know people. We feel like sisters, even though we are scattered all over the country. Mama Cher in Portland or Washington and there’s quite a few; Bruce is in Texas. There are several guys on the support group and they give us a lot of support also. They have had several get-togethers on the east coast where people meet at a hotel from the support group and it’s just one big happy family. We have a wonderful lady in Australia that I just love and it’s just so, and I would never have found out about the Centers of Excellence if it hadn’t been for the support groups because the first thing they say to you is, “If you haven’t been evaluated at an Interstitial Lung Disease Center of Excellence, go if at all possible.”

And when I found out that I could, that my insurance would cover the trip and a weeks worth of testing at National Jewish Health, which is the number one interstitial lung disease according to U.S. World and News Report for the second year in a row, I believe, I found out they are in Denver and I made an appointment. It was very easy and off I went.

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