Paying tribute to a friend and mentor who shared his IPF journey

I couldn’t decide whether to open my column this week with “I hate this disease” or “This disease simply isn’t fair.” It’s been one of those weeks when both statements are true. I hate this disease, and this disease isn’t fair.

The first few days after my idiopathic pulmonary fibrosis (IPF) diagnosis in January 2017 were a blur. I had what now? What is that? There’s no cure? That can’t be good.

My wife, Susan, was with me as we left that appointment at Inova Fairfax Medical Center’s Advanced Lung Disease and Transplant Center in Virginia. By the time we got to the parking garage, we were both on our phones searching for information about IPF.

After that, I felt uncomfortable in the first support group I attended, primarily due to the tone of the group, which I thought was a bit dark for me. Then I learned about an in-person support group led by the social work team at Inova. In general, it had more of an educational focus, but it also allowed attendees to occasionally talk about whatever was on their mind. Key to the conduct of the group was Pieter van den Assum and his wife, Johanna, who had worked with the Inova team to create a patient-focused support group.

It was in that group that I first met Pieter and Johanna. Pieter, the unofficial greeter of “Club IPF” at Inova, had been diagnosed with the disease in 2009. I was new to IPF, and given the prognosis of three to five years of survival following diagnosis, I wanted to know Pieter’s secret. He was eight years post-diagnosis and wasn’t using supplemental oxygen.

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With the arrival of COVID-19 in 2020, the support group pivoted to being online. It wasn’t safe for a community of IPF patients to meet in person, even in a hospital setting. We patients, like many others, were isolating ourselves in our homes. The virtual support group was our link to the outside world.

As COVID-19 continued to spread, it became apparent that no one knew how long the pandemic would last. Nevertheless, the Inova support group continues functioning to this day.

That same year, in 2020, I discussed with Inova social worker Susan Perry the concept of “Coffee Among Friends,” an effort to address the growing isolation we pulmonary fibrosis patients face. Pieter was among the first to sign up for the new group, followed by Dan Hughes. Pieter, Dan, and I have remained in close contact throughout the years since then.

Pieter received a single-lung transplant at Inova in March 2020. Dan and I both received a double-lung transplant in December 2020 and July 2021, respectively.

Pieter was one of the first people with IPF I met when my journey with the disease began. Dan recalled that his “first instance of meeting Pieter was when I was meeting Dr. Christopher King at the Inova Advanced Lung Disease clinic. I was asking questions about my IPF and the lowering of my immune system. King suggested I talk to Pieter.”

Pieter had created a website with his contact details and lots of other information about IPF. He was a mentor and friend to many people, including Dan and me.

Sadly, Pieter passed away on Saturday, May 17. He hadn’t been feeling well, and in November 2024, he was diagnosed with late-stage lung cancer. Shortly after that diagnosis, he asked me to share an update on his health with the members of our “Coffee Among Friends” group. He continued attending support group meetings when possible.

When I learned that Pieter had passed, I asked Johanna if the news could be shared with the support group. “Sam, I believe that the support group needs to know that Pieter, who never wanted to be in the spotlight but helped and touched so many people, … lost his last battle Saturday morning,” she wrote me.

I would add to Johanna’s words that Pieter did indeed make a difference. He was a humble servant and leader. He freely shared his story and his journey with many others. This disease is hard to live with, but Pieter remained calm.

Rest easy, Pieter. We will continue the fight 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.