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Pulmonary Fibrosis: What Do You Fear?

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Dyane shares what she fears most about her pulmonary fibrosis diagnosis and explains how this diagnosis has impacted her life.

What scares me the most about having this crappy disease is it has stolen my grand motherhood from me if that’s the word. I have three wonderful daughters, eight wonderful grandchildren from 16 down to the age of two. I live for those children. I live for those grandchildren. I want to see the 16-year-old graduate and get married. I want the two-year-old to remember me, to remember a fun grandma, and as much as they love me and we do fun things, I am the grandma who is connected to that funny little green tank and I can’t run and I can’t play ball, but I do have a jazzy chair that they like to drive. So there are some things, but I never realized I was going to be the type of grandma that I wanted to be. I want to be the one to go camping and fishing and hiking and I can’t do those things. I just can’t do those things.

You know, I can go to the zoo with my mobility chair and they can ride up my lap, but that’s the worst thing. The second worst is having to ask for help. I have never been the kind of person who asked for help, you know, taking care of the yard or cleaning the house and I simply can’t do those things anymore and I have to ask my grown children and it’s humbling. I was always the one who did for other people and it’s very hard to ask other people to do it for me.

The other thing is I hope to God I go like my mother. My mother, her husband walked out of the room to get her something and when he walked back in, she passed away – it was that fast. I don’t want my children to watch me die like a fish out of water because that’s what happens. Eventually you’re on 10-15 liters of oxygen and without it, you just literally turn blue and your other organs start to shut down and it’s just not a nice way to go.

But I always tell them that I am going to go out kicking and screaming because I am not going to go easy so, I want to just keep kicking as long as I can. I sign my emails. There’s a thought. It’s not my original one, originally I had seen it from a Harley rider who had had a bad accident and brain damage, but it goes something like this – the idea is not to end up in a well-preserved body, but to slide in sideways, chocolate in one hand, margarita in the other, going holy shit, what a ride – and I try and live up to that because I want to try, you know, everyday that I have is a blessing and so, I try and look on the bright side of things. I don’t really get depressed unless I have to fill out another medical form – that’s kind of depressing. I mean I beat breast cancer, come on, I am doing okay.

We are going on a cruise with the family in April. I drove to Denver by myself. Everybody thinks, “Oh my God! How did you do that?” Well, I got in the truck and I drove. It’s not that hard, you know, I just have to take my little oxygen with me and off I go, have oxygen - will travel. I might be connected to a 50-foot hose but I can get around the whole office with my 50-foot hose so, I am doing okay. I am still working. I think I’d be bored silly if I was at home all day.

Daytime television is not real good, but I just refuse to let it beat me. I am not going to let it beat me, you know, it will get me in the end, but one of the guys on the support group says, “You know, people always talk about ‘well, you can get hit by a bus tomorrow,” He said, “The problem with people with pulmonary fibrosis is that we’ve looked over our shoulder and we can see the bus coming,” but until it gets here I am just going to enjoy – I am going to try and enjoy as much as I can.

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EmpowHER Guest

Hello Dyane
how are you doing ? Love your Video thank you for
sharing your life. My Mother has the Disease she on her 4yrs been ok but now we found out that bottom part of both lungs are not working She starting to cough a lot even at time gagging you have been great help
Thank you and may the lord Bless you and your family.

Almira Torres

April 17, 2011 - 6:53pm

Hello Dyane,
I too have IPF. I also had lung cancer, now in remission. The IPF however seems to be on the March. I would like to use a quote from you about the bus on my facebook page. Is that OK with you?
[email address removed by moderator] I was diagnosed February 2009.
Regards, April

October 12, 2010 - 9:33am
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