Q1: Tell us about your story with Bionews. How did you start contributing here as an advocate?

A: I was involved in the rare disease community before I got my own rare disease. My father passed away when I was young. After his passing, my mother remarried to my stepfather who had lost his wife to ataxia. Three of my four step siblings had ataxia and passed away from it. When I got sick, I was actually on the board of directors for the National Ataxia Foundation. The executive director at the foundation knew Matthew Lafleur at Bionews. He asked if I saw his vacancy for a writing position on Pulmonary Fibrosis News. That’s essentially how I came to be here at Bionews. I had read Matt’s writing prior to that first interaction. The opportunity just presented itself.

Q2: You mentioned a strong connection to the rare disease community prior to your own rare diagnosis. How did this work in your favor when you were diagnosed with pulmonary fibrosis?

A: Much like pulmonary fibrosis, I already knew how there was no cure for ataxia. In that sense, I already possessed an understanding of chronic, progressive rare diseases that had no cure. Even though a pulmonary fibrosis patient and an ataxia patient go through different challenges, the people who do the research, science, and care teams all have a similar practice. I knew what to expect. I just never expected it to be me.

Q3: Talk about your blog “Make Every Breath Count.” From where do you draw your inspiration?

A: When I started, I knew exactly what I wanted to do. I wanted to share my journey because it might make someone else’s journey easier. For the name, I have a tattoo on my left forearm that says “make every breath count.” I got that tattoo shortly after I was diagnosed with pulmonary fibrosis. I got it in that spot because, early on in my diagnosis, every time they would do a blood draw or to put me under for a procedure, that was the arm they would use. It became a story of survival and a constant reminder for me.

Q4: Can you describe your diagnostic journey with IPF? Were the symptoms gradual at first? What were those early moments like leading up to the diagnosis?

A: I was 59 when I was diagnosed. It started the autumn before my diagnosis. I had a cough that just wouldn’t go away. I fooled myself into thinking it was allergy related for over a year. It was an early sign that there was something wrong. My wife insisted that I get a chest x-ray. At first, the doctor told me it wasn’t cancer which was a temporary relief. However, she did say that it looked like I had pneumonia. That led me to an appointment with a pulmonologist that later led to an appointment with a specialist, Dr. Steve Nathan. He diagnosed me on January 31, 2017 at 11:30 in the morning. The doctor told me I had about two to five years to live and to get my affairs in order. Although the news was shocking, he did have a plan for me that I fully committed to. I spent the next few years on increasingly higher doses of oxygen and struggling to make it across the room without it. It wasn’t until March 2020 that my care team mentioned me getting on the list for a lung transplant. This was around the same time as the COVID-19 pandemic, which deferred me for a year. In 2021, I was officially on the list. My care team was pretty confident and clear with me that I was unlikely to survive until Christmas of that year unless I received a transplant.

Q5: In one of your articles, you talk about the gift of time. Can you speak to what it’s like to receive a terminal diagnosis?

A: A year after my diagnosis, I had my first granddaughter. Since then, I’ve seen two other grandchildren born. The things I was worried about missing out on were overshadowed with not wanting to be ill prepared to leave the Earth. We were very up front about it. During the pandemic, we made all of my funeral arrangements. The funeral director came to the house in a full hazmat suit. We sat on the front porch and I signed all of the papers. I didn’t want my wife to have to deal with those types of things when the end came. Your body communicates with you all the time. The things my body was trying to tell me, I learned to listen to more closely. If I were to be transplanted, there were things we needed to do. I just had this seemingly endless list of to dos that kept me busy while I was also doing all of these medical appointments. The concept of passing away, while it wasn’t my first choice, wasn’t as scary as it would have been if I wasn’t prepared. I was more or less at peace with the notion of death.

Q6: Did you ever find comfort in the list of tasks? Was it a welcome distraction to the everyday challenges of living with IPF?

A: My care team gave me a three-page list of things to be done when we said we were going to shoot for a transplant. Checking those things off became both a victory and an acknowledgement that we were one step closer. I won’t say any of the testing was fun, but it was necessary. I had one test where they stuck a tube through my nose to measure the amount of acid in my stomach. At the time, the facility where I had that test done was in pediatrics. I was the tallest and oldest patient in pediatrics that day. Those moments during the process helped along with the monotony of the lists. It became somewhat comforting to find the humor in it all.

Q7: Run through the list of emotions when you got that call for your lung transplant after being on the waitlist.

A: I got the call on July 9th, 2021 that they had lungs available for me. There were three ladies on the phone with me at the transplant center. Their names were Michelle, Melissa, and Patricia. They had been my nurses through almost the entire journey. I was upstairs in my office while my wife was downstairs in her office working. I was yelling down to my wife who, funny enough, was annoyed because I was yelling so loudly. When she came up to find out what I was trying to say, I told her, “they have lungs.” It took her a while to even comprehend it. We both took a moment to pause and say a prayer for our donor and their family. Someone had just passed away to give me the opportunity to have this transplant. That idea is still very sobering to me today. Many transplant patients actually deal with survivor’s guilt because they are alive and someone else died. I never felt that personally. I took it as the opportunity to be a vessel to that person’s legacy. I’m living proof that organ transplantation works. I was transplanted on July 10th, and I went home on July 20th. Every year since then, I go to the National Donor Memorial in Richmond, Virginia on the day and time I got the call. I got a second chance at life the day I got my transplant. I plan to take very good care of these lungs to let that legacy live out so I can continue telling people about the importance of organ transplantation.

Q8: Did you notice any gaps or areas that need attention in the medical space as an IPF patient? How has that affected your advocacy?

A:There are so many places in the country that are health deserts. People in these areas can’t get the care they need because the specialist isn’t close by or they have to travel long distances for an appointment. That is unfortunate. It’s one of the things the pulmonary fibrosis community is trying to be responsive to. It’s a difficult problem to solve. There are some people who want to keep things the way they’ve always been. I’ve personally testified before the committee on Medicare and Medicaid to express my concerns about inefficiencies in diagnostics. I’ve also been part of a protest that marched on the Capitol at the Department of Health and Human Services and talked to as many representatives in Congress as we could and influenced real change. The IPF community is in desperate need of funding for research. This is and should be a non-partisan issue. This isn’t necessarily about me. I already have IPF, even with the transplant. What I want is a world where my kids and grandkids don’t have to go through what I’ve been through with this disease.

Q9: You talked about a bucket list trip from South America to Antarctica. Have you been able to add anything else to the bucket list since then?

A: Before my diagnosis, I was fortunate to have travelled to all of the continents but one: Antarctica. Following that and before I was transplanted, my wife Susan and I went to Asia. In 2023, we went to Amsterdam to see the tulips. We then cruised the rivers into Belgium. We are currently planning a fall trip to Prague, Germany, and Paris. My wife and I love to travel. We missed it so much when I was sick and had to stay home for a couple of years. We plan to keep adding trips at least on an annual basis to see and experience something we haven’t experienced. I have no interest in skydiving, though. That’s where I draw the line.

Q10: How has being a Bionews advocate helped you in your own advocacy and as a rare patient?

A: The Bionews platform gives me the opportunity to reach out to patients on every corner of the globe. If there’s an internet connection and a patient in a location, I have the ability to reach them. Bionews, as a whole, has become much more widely known as the place for rare disease news. When they do find us, they wonder why it took so long. Not everyone is always going to agree with what I write, and that’s okay. It gives me a bigger voice. As a community, we are much stronger as one voice when it comes to advocating at a national level. Bionews, in a way, gives me a megaphone to motivate people to pursue advocacy that could ultimately help them. Even better, it’s not the same canned articles on repeat that I’ve seen on other publications. As the community continues to develop, the platform I am afforded at Pulmonary Fibrosis News is a good tool for new and old patients.

We appreciate Sam taking the time to chat with us. If you’d like to hear more from Sam or his journey with Pulmonary Fibrosis, he has selected a handful of his favorite columns for you to read that are linked below. 

• My IPF Journey Has Taught Me to ‘Make Every Breath Count’
• Imagining a Future Generation Without Idiopathic Pulmonary Fibrosis
• My Circles of Friends Have Overlapped During My IPF Journey
• We Are Now Departing From Our Comfort Zone
• Why I do rare disease awareness and advocacy work on Capitol Hill
• AlloSure Lung tests, Medicare billing, and the tale of David and Goliath