Share your PF journey through a patient registry
Caregivers and family members can also add their voices for research
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017, I soon learned the cause and cure were mysteries yet to be solved.
I know firsthand how difficult it can be to solve a mystery. Difficult, but seldom impossible. I worked my first career as a special agent for the Air Force Office of Special Investigations until I retired after 22 years.
Another kind of investigator works as a researcher to understand pulmonary fibrosis (PF). In five types of PF — drug-induced, radiation-related, environmental, autoimmune, and occupational — the cause can be identified. Genetics can also be involved. A care team might use a variety of clues to identify a patient’s PF type.
When a cause cannot be identified, the PF is termed idiopathic and the diagnosis one of exclusion. My diagnosis had three classic IPF components: clubbed fingers, a persistent cough, and signs from a high-resolution CT scan.
Though we IPF patients share the same diagnosis, the specifics of our journeys are all important clues in solving the mystery of our condition. We need to share those experiences with researchers.
You can help
One way to share is through the PFF Community Registry, one of the primary research programs of the Pulmonary Fibrosis Foundation (PFF). It’s open to all patients living with PF or interstitial lung disease (ILD); lung transplant recipients who had PF or ILD; caregivers; and biological family members of those with PF or ILD (even if the patients have passed away).
The registry’s power lies in its number of participants. As that increases, so do the data available to researchers.
Caregivers are also able to contribute their experience with their patient. I learned that the perspective of my wife and caregiver, Susan, was different from mine. She could see me struggle in ways that I might not sense and can record those observations in the registry.
Joining the registry is a relatively simple process that takes about an hour. After you’ve completed the initial registration and submitted the initial survey, you’ll receive occasional emails to let you know you have further documents to complete in the registry.
Every good column should answer the question “Why?” Why should I join the PFF Community Registry?
Shortly after my diagnosis, when someone asked why I was involved in advocacy and awareness events, my response was that I do (insert activity here) so that a future generation doesn’t have to know PF. In fact, the first time I used that phrase was at a PFF Walk, where my sign read, “I walk so a future generation doesn’t have to know PF.” I’ve used it many times since then.
I want to encourage you to join the registry by sharing your experience with the disease. Your data and experience are your voice to researchers. The PFF Community Registry is recruiting, and they need you. In fact, the PF community needs you desperately. Your response might not be for you or me, but for those generations to come.
I joined as a way to make every breath count.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Alan Gould
I have IPF diagnosed in 2018. Was on Esbriet and then ofev. Stopped all medication as I have 42% lung capacity
Mita vyas
Hi,
I do not understand why did you stop Ofev/Esbriet. Can you please share? I also have very similar lung capacity and hate to take Ofev.
Thanks
Mita
Barbara Traub
I was diagnosed with IPF in September 2023. My condition seems stable and I have taken Ofev on and off. The first time it made me ill but I continued to take it feeling I had no choice. My doctor finally told me to stop and after recovering my health I have been back on it at a lower dose with no adverse effects.
I have not been able to connect with a local support group. Anyone in the Westchester/Rockland area may contact me.
Samuel Kirton
Barbara,
Thanks for your comment and for reding my column. Try the Pulmonary Fibrosis Foundation support group finder. If you do not have any success please come back here and let me know.
Sam ...
Pat Adams
I’ve been living with pulmonary fibrosis for 16 years. I had about 10 years with very little progression and then slowly I found myself using my oxygen more and more. Now I’m on oxygen 24/7 and trouble breathing on exertion even with oxygen. I’m at the point where I’m going to upgrade to an oxygen concentrator that goes up to 10. I’m 86 and have lived a good life. Two trip to Europe since my diagnosis and lots of traveling in the USA. So IPF is not always a death sentence even though I was originally given 2-5 years.
Samuel Kirton
Hi Pat,
Thanks for reading my column and for your comment. It sounds like you also are making every breath count.
Sam ...
Ramona Baughman
My husband of 67 years just passed away in December rom Pulmonary Fibrosis. He was a mechanic on the jet airplanes in the 50's and 60's. I have often wondered if his exposure to the parts that he replaced on his plane had anything to do with the IPF. He Was diagnosed in 2016. At the time we lived in mid Missouri and moved to the gulf coast of Florida for milder weather. The doctor's had given im 6 months to 3 years and to plan on the 6 months and get you life in order. I do think the milder weather helped him live longer. Also he was a marathon runner and from what we have heard, because he was in good shape, he lived longer than expected. I would be happy to give you any help I can.
Samuel Kirton
Hi Ramona,
Thanks for reading my column and for your offer. Please go to this link and join the PFF Community Registry.
Sam...
Nell Cannon
I have IPF. How can I be an advocate for my local community to bring about more awareness?
Samuel Kirton
Nell,
Thanks for reading my column and your question. First, please join the patient registry. You can follow this link to begin the process. Second, become active in the PFF advocacy programs. You can learn ore about raising awareness at this link There is a role for everyone.
Sam ...
Nancy Padilla
I was diagnosed with PF in 2019 at the age of 69 and diagnosed with acute heart failure in 2022 at the age of 72, I am now 74 and it has been 5 years since my PF diagnosis. I am not a candidate for a lung transplant or a heart transplant. I did have to have a pacemaker put in in 2022. I had been having breathing difficulties several years before my diagnosis but neither of these problems were discovered. The disease seems to be progressing slowly. I am not on oxygen and I chose not to continue taking OFEV because the side affects were terrible and I was living to be sick all the time. Not worth it to me. My symptoms include a dry cough, more exhaustion these days but I still have very good, productive days doing things I love. My breathing gets really bad when I am active and this causes the exhaustion by the end of a busy day for me. Since I have two life threatening problems I try to just take one day at a time and enjoy the good days.
Samuel Kirton
Hi Nancy
Thanks for reading my column and for your comment. I do hope you will consider joining the PFF Community Registry.
Sam...
mita vyas
Hi,
I was identified in June 2021. I also have auto immune condition. I am currently on Ofev (150) on and off.
I am progressing slowly. No coughing so far. I feel mental stress knowing I am doing the best I can do. I am 68 years old .
I have stopped traveling since I do not want to catch Covid or any other lung disease.
Samuel Kirton
Hi Mita,
Thanks for reading my column and for sharing your story. If I may make two recommendations. First, speak with your care team about what safe traveling would require you to do. Second, if you have not already find a support group to share experiences with other patients.
Sam ...
Bill Opsahl
I got Covid & Pneumonia was put in a ventilator for 4 or 5 days. I was given remdisavier I think that’s what gave me PF. For three years my doctor kept telling me I had scar tissue on my lungs. He retired in Jan. and I saw his replacement. I was told that I had PF. I had no idea what it was. And I asked him what medicine to take for it. He told me what it was and said that it had a lot of side affects. So I told him that I didn’t want to take it. He said okay. And that was it. So when I left I asked the girl at the desk to spell out the name of what I had. She did and I went home to look it up. Boy was I surprised. It said you love 3 to 5 years with it. I was totally shocked. I told my wife and she said don’t put a lot faith in Doctor Google. I’ve signed up for a clinical trial that starts soon. Hopefully they can find something that will help us people with this horrible disease. I go to the gym 4 to 6 days a week. I lift some weights and I walk on the tread mill each time. I do 30 minutes to one hour each time so I think that hopefully I can out live the 5 years. But if not going to HEAVEN won’t be bad. In fact it will be wonderful. God Less all of you.
Samuel Kirton
Hi Bill,
Thanks for reading my column and for your comments. Can I ask where you are located and if you are being seen by the care team at a hospital that is a part of the PFF Care Center Network? You can search for Care Center Network sites here.
Sam ...
PaulaKnapton
is this community only for americans?
Samuel Kirton
Hi Paula,
Thanks for reading my column and for your question. At this time the patient registry is only open to persons in the US.
Sam...
Michael Hustus
I still haven't gotten a full diagnosis yet, but when I add by cancer screening, one of the comments that the Doctor made off-hand after read my CT results just mentioned that I had Scarring on the bottom of my lungs "with Fibrosis"..
I can't get in to see my Respiratory Therapy Specialist until the beginning of June - so for now i'm just trying to learn as much as I can.
Thank you for all your advice and information..