This Thanksgiving, I’m Grateful for the Caregivers in the PF Community
Caregivers play a crucial role in the IPF journey, says columnist Sam Kirton
The pulmonary fibrosis (PF) patient population would likely become unhinged without the oversight of our caregivers. They have one of the hardest roles in the PF community.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my wife, Susan, was sitting by my side. For the next few days, she would burst into tears whenever I walked into the room because she had been researching the disease. Unsurprisingly, not everything you read on the internet is true.
We began identifying reliable data sources, such as the Pulmonary Fibrosis Foundation, which provides a wide variety of resources for our community. These include educational materials with vetted information and virtual support groups.
We also discovered that others with PF could provide insight into what our future might look like. The late Kim Fredrickson offered a glimpse of her life with PF through her Pulmonary Fibrosis News column, “Just Breathe … Compassionate Help for the PF Journey.”
The common denominator
I’ve written before that while those of us with IPF may share a diagnosis, we’re all on different paths. But we share something else, too: how important our caregivers are to us.
Regardless of where a patient is on their journey — diagnosis, pre-transplant, post-transplant, palliative care, or hospice — the caregiver’s role is essential.
Susan is my caregiver, and she has been with me every step of our journey. While I was the one diagnosed with IPF, caregivers experience many of the same emotions as the patient.
The most poignant example is from July 10, 2021, the day of my bilateral lung transplant. I went into surgery around 3 a.m. and was moved to recovery around noon. Susan later told me that for those nine hours, she sat in the waiting room not knowing if she would go home a widow. Thanks to an amazing care team, she did not have to know that experience.
Others along the way
During this journey, Susan and I have met some other amazing caregivers. While each of their stories is unique, caregiving is the common thread. I would like to introduce you to four of the caregivers I have met over the years.
Jeff Lucas: Annie Lucas was diagnosed with PF in 2008 and is now more than five years post-transplant. Her husband and caregiver, Jeff, championed her through the pre-transplant years and continues to be her biggest advocate as they live their best life.
Karen Carns: Jim Carns was diagnosed with IPF in 2010. He received a single-lung transplant in 2013 and another one in 2021. Today, Jim lives with two lungs from two different donors. Karen, his wife of more than 28 years, has been by his side as his caregiver since his diagnosis.
Debbie Klein and Debra Pross: Debbie and Debra lost their husbands, Steve Herndon and Frank Pross, respectively, to PF. Both women were caregivers for their spouses, but their roles didn’t end when their husbands passed. Today, they still actively advocate for the PF community.
But wait, is there more?
These are just a few caregiver stories. I invite you to share yours in the comments below; I may include them in an upcoming column. While you’re considering it, take a moment to ask the caregivers in your life how they’re doing.
This Thursday, Thanksgiving is celebrated in the United States. While gathering with family and friends or simply enjoying a moment of solitude, find a moment to practice gratitude. There’s always something to be thankful for, though I recognize that there are times when we may have to dig a bit deeper to find it.
I have so much to be grateful for, thanks to the generosity of my donor and donor family. Being thankful is how I can 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
Rebecca O'Hara
Hello Sam-
I am the Susan to your world ... My husband was diagnosed a month ago with mild, yet progressing IPF. We are set to start Esbriet or the generic form in the next few weeks. Like you, we are travelers and have had a trip to Portugal planned next week for 6 days and decided to live large and just do it before starting the drugs and possible side-effects.
Your story in inspiring and hit a nerve when you talked of your wife entering the room and crying. I am trying to be the good caregiver and not break down in front of my husband Ray, but he is also very scared and just wants a crystal ball. The last few weeks have gone between -"We have this and are going to live and do everything we can." to going completely down the rabbit hole, which is not where we want to be. Everyday we thank God for our lives thus far, the things we are blessed with, our children and grandchildren. We just, like you were handed Plan B.
The story of your lung transplant and subsequent travel is inspiring. I now that is not where we are now, but Ray is 65 and I am 63 and just recently retired after 42 years of being a speech/language pathologist and supervisor of programs for children with autism. I have spent my career helping young families maneuver through the special education system and managed care. We are now faced with trying to figure out the medical system and cost for drugs int he midst of my husband transitioning form my Cobra to Medicare and Part D for medications.
This is probably all too much information, but we are meeting with our doctor next week to and I am hoping to get information about support groups, pulmonary rehab. programs and just places to connect wit others on our journey. Your page caught my eye and our new mantra, even on the darkest days has to be... Make Every Breath Count. Thank you for that and the hope your page gave me. How old when you were so fortunate to receive your lung transplant? Congratulations on traveling again - This was our plan A as we headed into retirement.
Any advice you or Susan can give as we blaze this new trail is so welcome. We live in a suburb of Philadelphia in a small town called Yardley. We have excellent care through our pulmonary team at University of Pennsylvania.
Again - Happiest of Thanksgivings to you and your family.
Warm Regards,
Becky O'Hara
Samuel Kirton
Hi Becky,
Thanks for reading my column and your comments. I think you and your husband are on the right track; continue living life.
Those are all good topics to discuss with your doctor next week. I would also suggest you discuss your desire to continue traveling with your doctor/care team. My care team only turned down one travel adventure. We wanted to go to Machu Picchu and they felt that the altitude would be too much for my lungs pre-transplant. Today, that would be a different story.
If you still have questions or cannot find the resources you are looking for please reach out to me again and let me help.
Sam ...
Beth Cooper
I stumbled across the PF Foundation and joined this news network when searching for information to help me with my Interstitial Lung Disease diagnosis. I was diagnosed in March of 2022 and am already being considered for lung transplants. My fibrosis and need for oxygen has increased and the cause is still a question, but looks to be partially an autoimmune disease.
I am thankful for my caregiver, my husband, Jimmy. He has been there with me for each appointment. I am also thankful for all who have been down this path before us. It is nice to know there are choices depending on each person’s condition. Thank you for your article, Samuel! We must always remember our caregivers and know they are going through struggles too.
Samuel Kirton
Beth,
Thanks for reading my column and for your note. More importantly, thanks for recognizing Jimmy's role as your caregiver. I would suggest you join the Forums here at Pulmonary Fibrosis News (link is at the top of the page). Also, the Pulmonary Fibrosis Foundation has recently released a caregiving guide which is available on their website.
Sam ...