30 Days of PF: I’m Wishing for a Better Future for Us All

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by BNS Staff |

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30 Days of PF | Pulmonary Fibrosis News | Reader submission | 30 Days of PF graphic

Photo courtesy of Tracey Harms

Day 23 of 30

This is Joan Ciccarelli’s story:

My name is Joan Ciccarelli. I am 83 years old and have lived with IPF for at least 12 years. I have tried everything possible to help myself and my well-being.

These days, I am experiencing some heart issues but am fortunate that my husband is my helpmate. I end up in bed often, trying very hard to breathe, and take morphine when it gets really bad. I’m on oxygen and it often feels like I’m being squashed.

My family is my biggest support. My daughter, whom we call Cinderella, comes over and changes our beds, cleans our washroom, and washes my kitchen floor. I am very grateful for her but upset that I am unable to do these things by myself.

The oxygen company sends a nurse over once a year and validates that I can keep using my oxygen machine. I am very lucky to live in a country that gives this to me free of charge. Otherwise, I probably would not have been able to afford it on my own.

I sometimes have a pity party and feel really sorry for myself. My family sometimes gets mad at me in these situations, but they are not in my shoes.

At one time, I had six ladies coming over for coffee one day a week. Now there are only two because three others have passed away and another is in a nursing home with dementia. I am still lucky to have two great friends.

Through the website ancestry.com, I found a cousin who lives in England, and we communicate by email. I have another cousin in Alberta, and we talk once a month on the phone.

I hope that a cure will eventually be found, even if this is considered an orphan disease, for people who get this awful disease in the future. Good luck to all who are contributing to this campaign. I’m wishing for a better future for us all.

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.