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Pulmonary Fibrosis: How Can Women With The Disease Advocate For Themselves?

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Dyane shares how she advocates for her health and how other women diagnosed with pulmonary fibrosis can advocate for themselves at their doctor's office.

Well, one of the things, I was just in the hospital with a bad case of bronchitis and I had to keep insisting to the nurses that eight liters of oxygen was what I needed, not two or three, because while I am sitting still I really only need like four liters of oxygen and my oxygen saturation will be at 96-98%, which is great, but the minute I get up my, saturation levels drop and so I need to keep to set the liter flow high enough so that when I get up I don’t fall over, and they kept worrying about that it was on too high and I kept saying, “Well, you don’t want me to fall over on the way to the bathroom, do you?”

So, they don’t understand that because COPD, people with COPD, when they are on oxygen, normally they are on two to three liters. Anything above that is just way too much oxygen for them because their problem is getting the CO2 out and that’s not my problem. My problem is I have physical scarring in my lungs, the oxygen has nowhere to go, there’s not enough transfer points in my lungs to get the oxygen into my bloodstream, and so it needs to have a high flow to be ready for me to move because my muscles immediately need that oxygen.

And so, I need to fight that way. When I found out about National Jewish I asked my pulmonary doctor and she said, “Go” with her blessing because she freely admits she doesn’t know enough about pulmonary fibrosis as they do. She is a wonderful doctor and she listens to me. She does not, when I tell her well I have upped my oxygen from six to eight liters, she goes “Okay” because she knows I understand my body better than she does and she is a wonderful doctor that way.

I have three or four wonderful doctors. I don’t know how I got so lucky. I really do, and so I have to fight, I’ve had to explain this to the people that supply my oxygen because they are like, “Are you sure?” And I am like, “Oh yes I am,” because again, they deal mostly with people who are either on short-term oxygen after surgery or maybe have lung cancer or COPD. I think I am their only pulmonary fibrosis patient and so I have to explain, ”Well I need this much.”

When I came back from National Jewish I had only a five-liter concentrator at work and I said, “Nope, I need a ten-liter,” and they are like, “Are you sure?” And I am like “Yes I am.”

I won’t let them tell me what I need. I know what I need and a lot of that came from… I have learned a lot in the last eight years. In the last eight years I have had to deal with pulmonary fibrosis and breast cancer – both in one year. That’s why I got sick. I had just gotten back to feeling normal when the breast cancer was diagnosed.

I have diabetic for, going on 15 years now and a lot of the fibromyalgia, achy arthritis, whatever it turned out to be, the connective tissue disease, I have been dealing with those a lot for the last eight years. Everything just kind of came to me and so I have gotten very proactive about my health.

You need to understand what’s going on in your body. I have done a lot of reading on the internet. I look up. I get all my doctor’s reports and I look up terms I don’t understand and that way, I mean how else can you talk to your doctor if you don’t understand what he is talking about.

Hi, I am Dyane and I’ve shared my pulmonary fibrosis story with you. If you’d like to share your story with us just click the ‘SHARE’ button and we’d love to hear your story.

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