I’ve found benefits and drawbacks to joining the IPF fraternity
None of us chose to join this 'organization,' but I'm grateful for our community
Fraternal organizations have long been a part of colleges and universities. It’s not uncommon to find an area around campus labeled as Greek Row. These organizations allow like-minded individuals to join together, taking hold even beyond college campuses.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2017, I had no idea I was joining a fraternity — one that no one wants to be a part of. In college, I didn’t join the traditional Greek fraternities, though I was a member of Alpha Sigma Lambda, an honor society for adult students. Professionally, I’m a life member of the Fraternal Order of Police. Those were opportunities I voluntarily leveraged because they benefited me.
I didn’t have a choice about joining the IPF fraternity. None of us did, but here we are. If we were in a Greek fraternity, our letters would be iota pi phi.
The benefits
You might be surprised to learn that I believe this fraternity has benefits. Longtime readers of my column will know I have a passion for advocacy. This fraternity is where I turn when I need to gather voices from the patient or caregiver communities.
Those of us with IPF develop an immediate bond and often share our hacks and shortcuts with each other. I cannot tell you how many methods I’ve learned for keeping the tubing that runs from the oxygen concentrator to the cannula from kinking.
Our members don’t all participate at the same level or exhibit the same demeanor. Some prefer to sit quietly and listen while others ask many questions and want to be more involved. Some are angry and uncertain about why they developed pulmonary fibrosis (PF), especially those with the idiopathic type. Members with familial PF may be sad, having seen a family member experience this disease.
Those who know me would probably describe me as positive and outgoing. Shortly after my diagnosis, I wrote in block letters, “Be positive in all things.” That mindset has served me well, causing some to ask how I can be happy with a condition like IPF.
When I received a bilateral lung transplant in 2021, I became a member of a more exclusive chapter of the IPF fraternity. I view this step as a continuation of my journey. I continue to be involved with the PF community, though I’ve noticed that some seem to leave the fraternity after a successful lung transplant. I understand that it may be a chapter in their life they wish to leave behind.
The drawbacks
There’s also a downside to joining such an exclusive fraternity, even as its members become our circle of friends. Many of my former colleagues went silent once I left the workforce. As my IPF progressed, staying in touch became more difficult for them. I do think people have difficulty relating to someone with a chronic, progressive, incurable disease.
However, I’ve maintained some friendships that began well before my diagnosis, and I’ve formed new ones along the way. My friends outside of the IPF fraternity bring a necessary balance to my life.
I’m a proud member of iota pi phi. I feel I’ve helped others in this fraternity, and I know that many have helped me, allowing me to make every breath count.
Do you see other benefits or drawbacks to belonging to the IPF fraternity? Tell me about them in the comments.
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.
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Marianne Brooks
Sam - Excellent article. Thanks for sharing. Very interesting and true article. Do you know anyone who received a lung transplant after age 70? My doctor wants me to consider prescreening to see if I qualify for a transplant I have many questions. I am not sick enough yet to need a lung. Local lung center transplants up to age 75.
Marianne
Barb Holden
When my husband was diagnosed in July 2017 we were lucky to find a support group in our town of 4500 people. There were 12 members then. Now we are down to one. My husband was a casualty in 2020. The thing that upset me the most was that we knew all the members were going to die and the deaths were all during Covid. We couldn’t have a “regular” funeral. But our grief kept increasing as they dropped like flies. Alan (my husband) asked me to keep the group going for him. I do. We now have three new members and one from the original 12.
I’m glad you are still able to enjoy a relatively good life. Research is so costly and because IPF is relatively rare it doesn’t get much research money. So their focus has been on treating the symptoms because the research to determine cause just simply costs too much. I wish this wasn’t true. Maybe in the future this will change but without us advocating for it there’s no hope for change. For now we do what we can to support each other and that’s what our “Support” group does. We keep them informed about new possible medications, join drug trials, and whatever else we can do. Awareness is the mist important thing right now. I had a booth at a recent Seniors Fair. The one comment I heard most was “I never knew this disease existed”. That’s where I see the support groups challenge.
Thank you for sharing your good news story. Positivity is key.
Gary Robinson
Thank you for an uplifting column. It is a tough go and what a gift you received a lung transplant. I'm too old to be eligible, regrettably.
If you have the data about all the current trials, it would be great if you could publish it. Not anything extensive just a table that lists the trial, goal, present state of the trial.
Ronald Cole
Sam thanks for sharing, despite the draw backs of ipf we are blessed to be part of this fraternity.
Rebeca Burgess
What?! There’s a way to keep the tubing from kinking? Do tell. I’m relatively new at this. The last couple of years have been MISERABLE. Just when I was on the home-stretch with my teenager in high school my life did a 1-8-0! Isolated and alone and unable to socialize because every little smell got me coughing and mucus laden. Now I’m settling into a new normal. The streets I once drove around are distant memories and difficult to navigate when I have to go to appointments. Appointments! What’s up with these have to do’s? PFT, and walk tests are senseless and expensive. I already know that my lungs are fibrosed. I don’t want to submit to anymore tests, but I need the oxygen. Doctors say the fibrosis is irreversible, so why subject myself to more testing? Help.
Linda J Aiudi
Thank you Sam for being the advocate that keeps us all informed and positive.
Having been diagnosed in 2023 with IPF, my health has changed in a way that is still very manageable. I consider myself lucky when I read of others experiences. I use oxygen for exertion only and no longer use it during the night at all. The breathlessness and coughing can be annoying but I live with it.
I am 65, soon to be 66 and though my doctor recommends the screening for a lung transplant I chose not to.
People tell me I should, that I may change my mind at some point and it will be too late. But at what cost?
Can you or any members of this community write more about the experience of living through a transplant? I am questioning whether I should go ahead with the prescreening, however, I am not sure I want to live life with all the complications that a lung transplant will expose me to. Is the quality of life much better afterward? Are we just trading one problem for many other side effects and limitations?
A good friends' husband recently passed away from IPF, he was quite a bit older, and he never was eligible for a transplant. It was a reality check for me. So I am seeking more info that may change how I feel.
Thank you Sam for everything you post here and to the PF warriors who share their own experiences. There is a community here which helps us feel that we are not alone and I am grateful for it.
Ginny DeFee
Rebecca, I know exactly how yoo feel. I had just lost my husband to lung cancer in 2020. Then in May of 2021, I had double pneumonia. From that I was diagnosed with IPF. My life has changed dramatically!! I went from being an active, outgoing person to being mostly having to stay inside. I was prescribed Ofev almost a year ago. DIarrhea was the side effect that I had (and it was horriible). Did not dare to leave the house! I truly believe my disease is hereditary since my mother, an uncle and cousin has succumbed to it. My prayers are for everyone suffering from respiratory problems and that a cure can be found soon. God has blessed me in so many ways. He has provided me a strong family and friends support system who take care of my every need. He is a loving and caring God.
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