RICHMOND, Va. -- This is a story of shock and grief turned perseverance and triumph. It’s Samuel Kirton’s story. The story of how Kirton took jarring news of a fatal diagnosis and turned it into a mission of doing good and paying it forward.
Sam and Susan Kirton live in Lake Anna and enjoy the simple things in life like traveling, family, football, and food.
Sam is an avid Bills fan, his wife cheers on the Steelers.
Sam cooks to escape the “downs” and hustle and bustle of the day.
Susan enjoys eating everything that Sam cooks.
They're a perfect combination.
I met Sam, and his wife Susan, in Richmond, at the National Donor Memorial on Sunday morning, July 9, 2023.
An extremely special day for Sam.
Before walking in, Sam’s emotions overtook him.
Eyes full of tears, heart full of gratitude.
“Part of the beauty of the memorial is that there's a water feature that runs through here," he said. "From right here where I'm standing now, I can hear the water. I can feel the memorial. Each time I come back to the memorial when I get to this point right here and look down the ramp into the memorial, I can't help but become emotional.”
But to understand why this place is so important to him and to understand why Sam is here today, at this exact time of day, you'll need to learn about one of the most difficult times in his life.
On January 31, 2017, Sam’s doctor told him he had Idiopathic Pulmonary Fibrosis, or IPF, at the age of 59.
IPF is a cruel scarring lung disease that's progressive and chronic, making it hard to breathe.
There is no cure.
A grim two to five years to live, a jarring and surprising diagnosis, especially for Sam, the retired Air Force Special Agent, who served his country for 22 years with the Office of Special Investigations.
"It was one of those moments you won't forget because part of the message was, go get your affair in order," he said. "I felt like I had never been sick a day in my life until I was diagnosed. But once I was diagnosed, it felt like I was coming apart at the seams."
After the immediate shock, Sam set out to beat the grim odds.
He took to his journal and started writing, documenting his journey and keeping his mindset in check.
One of the first entries in his journal, the day after his diagnosis said, “Be Positive in All Things.”
“It was very early on, a testimony that when I wrote “Be Positive in All Things” in the early pages of that journal, it was because that was going to be the way I was going to get through this,” Sam said.
With a positive outlook, he became his strongest advocate for his own health, with Susan by his side. Learning and researching IPF, changing his diet, walking on a regular basis to increase his strength, going to pulmonary rehab, participating in studies and clinical trials, taking 30-plus pills a day, and hoping for positive results.
But as the months passed, it became harder and harder for Sam to breathe. He couldn’t go anywhere without his oxygen tank in tow.
“I look back at pictures now, and I see myself wearing a nasal cannula and dragging an oxygen tank behind me to go out and exercise. They (his care team) said this would become my new normal," he said.
Fast forward to late 2019 and things began to worsen.
It became increasingly more difficult to breathe.
He began to get short of breath with the simplest of tasks.
"We were scared, especially as we got into 2021 because the doctors were becoming more noticeably concerned," Sam said. "I was on seven liters a minute of oxygen just to walk around my house. And as I began to get worse, we were pretty sure that I wasn't going to make it to Christmas. My systems were all failing."
Dr. Shambhu Aryal, the Medical Director of the Lung Transplant Program at INOVA Fairfax Medical Campus, told us Sam’s window to receive a lung transplant was shrinking.
“Typically with IPF, we would think of the transplant window being in the order of months. In his case... it was in the order of weeks to months," Aryal said.
Sam's care team made the decision to place him on the waitlist. He was sick enough to qualify and hopefully strong enough to receive a double (not single) lung transplant.
Dr. Aryal shared that as many as one to two out of ten people may never make it to the transplant procedure despite being on the waitlist.
But Sam stayed positive hoping that the odds would be in his favor.
Then at 9:03, the morning of July 9, 2021 he received the call.
“I was in my office and Susan was downstairs in her office. I knew the number was from the hospital, but what I wasn't expecting it was the call. Michelle, who was the post-transplant nurse, said, ‘We got lungs for you.’ Wait, hold on. What? Let me get Susan. I go to the railing at the top of the stairs and I called out to her. She comes to the bottom of the steps and a very annoyed voice said, ‘What? I'm doing something.’ I said, ‘It's the call.’ She said, ‘What?’ and I said, ‘The call.’ She was upstairs immediately.” Sam said.
“This is not intended to be a pun, but it literally took my breath away. I couldn't say anything. I knew the voice on the other end of the phone was Michelle, one of the nurses that took care of me. And I knew that the words I heard, but I couldn't respond. I couldn't make a sentence. And I'm a fully grown, reasonably intelligent adult, it was another watershed moment that will be forever there.”
Sam shared that as soon as he got the pertinent details, he hung up the phone to prepare to hit the road.
“Before we ran out the door, we paused for a minute and said a prayer for my donor and my donor's family," he said.
After hours of waiting, at 3 a.m., the next day on July 10, the care team finally took Sam back for his eight-hour procedure.
Susan, waiting anxiously and patiently, by herself, due to COVID protocol.
To keep herself busy, Susan provided frequent updates to a private Facebook Group of family, friends, and supporters who were following Sam’s journey over the years.
The procedure was successful. Then the time finally came for Sam to open his eyes and take his first breath.
Susan's competitive spirit, stepping in to remind Sam he is a fighter.
“Can you see me? Do you know I love you? Do you know you're a miracle? We're going to get that tube out of you in a minute, baby. You ready? Sammy, are you ready? Yes, you're ready.”
Sam, unsure and not quite ready shook his head “No.”
Reflecting back, Sam shared that he was worried that his new lungs may not work.
“If it didn't work, then there was no going back," he said. "They had removed my lungs, my native lungs, and they had put the gift lungs into me, and everything was good. The surgeon assured Susan it was all good. All the numbers looked good on the machines. I hadn't heard any of that. I was just waking up. This was all news to me.”
But despite being the most complicated transplant that is done on the human body just like that, Sam’s new lungs did in fact work. He took his first breath.
Two years later, Susan and Sam both reflected on that moment of breathing in new life with new lungs for the first time.
“Hearing Susan's voice in that tape, you could hear the cheerleader coming through. You're going to do this. You got it. And that was important,” said Sam.
“Because we always knew that transplant was our best chance of a longer life together. I never doubt it," Susan said. "I never had the thought of, What happens if this doesn't work? It was always, Let's do this… He worked really hard to get to transplant. Obviously, a very emotional day. But when he woke up, it was what I expected. I didn't expect any different.”
Sam’s new normal is being torn between emotions of happiness and pain.
“As joyful as that moment was for me, I know that now realizing that just a couple of days before, my donor family had experienced grief at an unbelievable level," he said. "Their grief and my joy were an interesting combination. But I couldn't be more thankful to them for what I was able to do now. I was. Breathing on my own.”
At their home in Lake Anna, Sam and Susan show their thanks with a table setting for a person they have never met, yet will never forget.
“On the first anniversary of my transplant, it was a way to remember my donor, and it stays out almost year-round.”
But Sam wanted to do more.
“What can I do to help others? What can I do from an advocacy perspective to make people aware of the disease, idiopathic pulmonary fibrosis? What can I do to make awareness about why Donate Life is such an important movement? It's not for the people who are passing, it's for the people who want to continue living. When they make that choice, they have helped me make every breath count," he said.
Sam is on a journey to increase awareness about the importance of organ donation. He leads an IPF support group for INOVA and DC metro area, called "Coffee with Friends" and he also pays tribute to his donor through writing…
Sam's blog, a passion project, and a way of paying it forward.
Every week, a new post, new insight with close to 100 entries so far.
He shares his story with others; helping people with IPF make sense of the disease and understand what they might be about to experience.
“It's hard to describe to somebody who's never missed a breath. It's hard to describe to somebody who believes that they have everything in life that they could possibly want. … But until you can no longer take that breath and do the things you've always loved to do, you don't really know what Make Every Breath Count means,” said Sam.
One of Sam's topics was about what he and Susan call “The Village.”
It's people who supported him. It’s his care team, family, friends and neighbors.
Like Sheila, Rex and Sandy.
“This is the woman who came out of Pennsylvania, dropped everything she was doing that day to show up for us. And then in spite of telling people that we can't have visitors, you can't come to the hospital, this couple, Rex and Sandy, came out and sat on the roof of the garage just so we know they were there," Sam said.
Also, like Melissa who lives in New York, just outside of Buffalo.
“The newspaper headline was Mineral Man Goes to Washington. She created this [a] caricature of Mineral Man using the best representation of me that she could make. I loved it. It is something that has stuck ever since.”
Sam, forever grateful to so many people, but it's the person who he has never been able to thank that brings him back for an annual ritual to this place.
This is the second year that Sam and Susan visited the National Donor Memorial, only July 9.
“I know that at 9:03 this morning, my phone is going to sound an alarm because that was the moment I got the call,” Sam said.
Before entering the National Donor Memorial in Richmond, Sam took a moment to reflect.
“I'm only here because somebody else isn't, and their name is inside on that memorial somewhere, and I owe them the biggest debt that I can never repay," he said.
He and Susan mustered the strength to walk in. Listening to the endless waterfall, which represents the unlimited number of lives that are impacted by organ donation. Seeing the names of donors on the memorial wall reminds them of those who lost their lives but gave life to others.
Sam’s message for his donor?
“I love you. I really don't know how a person who has never met me could love me so much for me to have these lungs. It is absolutely pure I want them and their family to know how much I love them," he said. "I owe them so much. I can't fix every problem in the world. But my donor family made such a huge difference to me, to our family, to my granddaughters. My oldest granddaughter never saw pop pop without an oxygen tank.”
Now, Sam's purpose, his mission, is to make every breath count.
“I want to be the poster child for making every breath count. I want people to see that through organ donation, through giving somebody else a second chance at life, that they can help somebody else do that same thing.”
Dr. Aryal feels Sam will beat the odds, making every breath count longer than most.
“I'm excited for him because I think he's going to do well. He's going to beat all the statistics we talked about. He's going to live longer than those patients, and he's going to continue to support the community," Aryal said.
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