Dealing with grief is unique to each of us in the PF community
At my age and with my disease, I've had much experience with loss

Grief is a universally understood emotion. How that emotion is individually expressed is unique.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF), I was 59 years old. I’d experienced loss by then, both family and friends. I cannot bundle grief. In my own unique style, I grieve the loss of each person separately.
I understand that in our social circles, we tend to age with people of similar age. Today, at 67, I know loss comes more frequently in my circle. What I hadn’t anticipated at diagnosis was the amplified loss I’d experience as a part of the IPF community.
Many people I’ve met on my disease journey have become friends; our pulmonary fibrosis has forged a common bond. Some I met shortly after my diagnosis have been with me throughout my journey.
As a speaker for the Pulmonary Fibrosis Foundation (PFF), I’ve met not only other ambassadors of the organization, but also people in my audiences. When I formed the Coffee Among Friends support group, I met many more virtually. Adding to that list are those I’ve mentored on their pre- and post-transplant journeys.
Following my bilateral lung transplant in July 2021, I came to know many of you who’ve read and commented on my column here at Pulmonary Fibrosis News.
Each passing resonates
We each grieve a loss in our own way. I deal with loss privately, at least initially. That’s not to hide my tears, but to process how thankful I am. Were it not for my donor allowing me to receive the gift of life, you wouldn’t be reading this column.
I’ve found some losses more difficult to handle. Glenda Rouland, whom I introduced you to in a 2022 column, persuaded me to use my voice. She was the reason I applied to be a PFF ambassador. She passed shortly after her lung transplant.
In that same column, I introduced you to Rita I. Muzacz and Jane Cypra. I never met these women, but I did meet their daughters. I came to know both Muzacz and Cypra from the stories shared by their girls.
More recently, I introduced you to Melissa King and Melissa Wheeler in a September 2024 column. Since then, they’ve both passed away. Their deaths were among the most difficult losses I’ve experienced.
When I emerge from dealing privately with my grief, I want to be able to help others deal with their own. For example, when a member of Coffee Among Friends passes, I introduce the news at the meeting’s start. I do consult with the family to ensure they’re OK with me sharing their loved one’s death. I’ll also ask the family if they’re OK with being contacted and, if so, how, so we can share that information with others in the group. Each person attending is free to speak about the member who’s passed.
There’s no universally correct way to grieve. When I speak with family members who’ve lost a loved one to IPF, I’ve found their grief continues for a long period. It may seem to ebb, only to reappear unexpectedly in a more impactful form. My practice is to let people express their grief in their own way. Offering a response such as “Well, it has been a year” often isn’t helpful and can be isolating. Validate their grief instead of discounting it.
In the PF News Forums, a section titled “In loving memory” remembers those who’ve passed. I’ve started writing down the names of those I know from that section as well as others with the disease who pass. For me, it’s a way to memorialize their battle. It also reminds me that I’m continuing 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.
Cynthia Warren
My husband was diagnosed in 2015 although I think he had it prior to then. He was on Ofev and passed in November 2024. It's a devastating disease and his death came suddenly within 2 months. We were married 53 years and I miss him so much
Gamdoor Brar
Hello Cynthia,
Sorry to hear of your loss. Hope you have family with whom you can share your thoughts and pain. Wow, 53 years of married life, you have been blessed. Definitely, it would be very difficult living without that one person who has been with you for such a long time. I hope all those memories will ease the pain of loneliness.
I was diagnosed with IPF end of 2018 when I had a double pneumonia. Chest x-rays pointed to fibrosis. Still, it had no impact on my day to day life until April 2024 when I had severe shortness of breath. That was my first experience of how bad it could get. On hindsight, I realize, I might have had the disease way before, somewhere even prior to 2002. Hard to define. I could barely run for 5 minutes when I would run out of breath.
Started taking Ofev in July 2024 and had no major issues till recently, sometimes causing severe diarrhea.
Dealing it with now, I fear any major physical movements which cause me shortness of breath. Currently I have joined an exercise group for physical rehab. Hope that will help me move around.
Wishing you all the best
Gamdoor
Samuel Kirton
Hi Cynthia,
Thanks for reading my column and for sharing your story. I am sorry for your loss. This disease is devastating indeed. My hope for you as you grieve is for peace and light.
Sam ...