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.
6 comments
Tiffany
Posted on November 9, 2021 at 9:45 pmThanks for giving others hope Dianne! Thanks for sharing your story!
Ernest
Posted on November 10, 2021 at 12:01 amAs one of Dianne’s caregivers I can truly say that she know her body and have a strong Will to live. She’s constantly researching ways to enhance her breathing and helping others who maybe facing the same challenges. Her main objective is to live her life one day at a time and put her trust in The Lord. I am very proud of her.
PF NOW
Posted on November 11, 2021 at 6:28 amThank you so much for being a caregiver, for supporting Dianne, and for reading her story. She has such an amazing attitude and approach to self-advocacy. Please reach out any time either of you have questions or need encouragement. To learn more about ways to enhance breathing, visit https://pulmonaryfibrosisnow.org/learn/exercise-your-lungs-2/#excercise. To see articles for caregivers, visit https://pulmonaryfibrosisnow.org/tag/caregivers/. Happy National Family Caregivers Month!
Cynthia D Hightower
Posted on November 11, 2021 at 7:03 pmDiane is Phenomenal lady!. I’m proud to call her my friend. She’s a inspiration and motivation for me because of her strength, determination and drive to live her best life. She’s a great example for us all to emulate!
ARLEATHIA CHAMBLISS
Posted on November 12, 2021 at 12:20 amThank you for sharing your experience Mrs. Boone. I have a new prospective of how I need to pay more attention to what’s going on with me. Also, it is a blessing that you were obedient enough to know when to change doctors to further take care of YOUR HEALTH NEEDS. Very inspiring.
Wanda Daniel
Posted on November 17, 2021 at 3:32 pmThank you so much..To God Be the Glory for what HE has done in my Dear Friends Life. You are an example of a strong woman of Faith and I can only imagine the power needed to go through what you are going through. Stay Healthy and Blessed and keep encouraging others as you go through with your hands in gods hands.