During our Self-Advocacy Special Education Week, we heard many powerful advocacy stories from people with PF. Thank you to everyone who shared their advice and encouragement in our community forum and support group.
Because multiple members of the PF NOW! community volunteered to share their advocacy stories, we’re publishing a series of advocacy stories and interviews. Be sure to read our first story here featuring a poem and interview by our community member Phoenix. Read on to see the next advocacy story, which is an interview featuring our community member Dianne.
PF NOW!: When did you get diagnosed with PF, and what caused it?
Dianne: I’ve been diagnosed over five years ago. I also have Lupus, and the Lupus attacked both of my lungs.
PF NOW!: What symptoms do you struggle with?
Dianne: I have shortness of breath, chest pains, tiredness, lungs scarring, and coughing – especially at night. I also have acid reflux and vertigo.
PF NOW!: Have you been able to find the support you need to fight PF? If so, how did you find it? And if not, why do you think it’s been so hard?
Dianne: Yes. I have a caregiver and a great support team of family and friends to give me encouraging words. They remind me of and take me to my doctor appointments and anything I need. My primary, rheumatologist, pulmonologist, gastrointestinal and my lung transplant team all work together as one team. My lungs transplant case worker found a foundation to help me with my medication cost, and I have my PF NOW! support group.
PF NOW!: Can you tell us about a time when you had to stand up for yourself or speak up about your health needs? What was that like for you?
Dianne: I don’t like changing doctors; however, having a pulmonologist for years and not getting better (always in and out of the hospital), I had to speak up for myself and find myself another doctor.
It was hard for me because now I had to find another doctor to trust.
That was the best decision I could have made because my new pulmonologist did a lung biopsy, he also sent me to pulmonary rehabilitation, put me on oxygen, and did all kinds of tests and blood work. When the time was right, he referred me to a lung transplant hospital.
PF NOW!: What advice do you have for others with PF who are trying to advocate or stand up for themselves?
Dianne: Know your body, and know what you can and cannot do. No one knows how you feel BUT YOU. Find a group of specialists that will care together for your well being and will listen to you, and not just give out medication. Remember: we have PF but PF does not have us!
Please comment below to thank Dianne for sharing her advocacy story! If you’d like to be interviewed too, please contact us.