What IPF patients should consider before pursuing a lung transplant

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, at age 59, and received a bilateral lung transplant in July 2021.

During a visit last week, my adult daughter Heather asked me a perplexing question: “Is the IPF gone now that you have new lungs?”

That’s a tough one to answer.

With any type of pulmonary fibrosis (PF), the scarring is progressive and irreversible. That said, each patient is unique, so the answer to this question will differ for all of us.

In cases where the cause of PF is identified and eliminated, the disease is not likely to return following a lung transplant. Examples of causes that can be avoided include asbestos, silica dust, mold, animal droppings, and bird dander.

For those of us with IPF, the cause is unknown, so we can’t predict whether the disease will return after transplant.

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Is a lung transplant right for me?

Regardless of the cause and type of PF, it’s important to remember that a transplant is not a cure.

Shortly after my diagnosis, I discussed with my care team whether a transplant would be the right course of action for me. My team helped me understand that the surgery requires a lifetime commitment to medications, medical procedures, and follow-up appointments.

We also discussed whether my IPF could return, even if I had new lungs. There was no way for the team to answer that question with absolute certainty. They did tell me that, without a transplant, my disease would continue to progress, but they didn’t know at what pace it would do so. We discussed the negative impact an exacerbation could have on the progression. We also discussed the potential benefits of transplant, such as an improved quality of life, a greater ability to travel, and no longer needing supplemental oxygen.

I knew I wanted to pursue transplant. This decision is incredibly personal. Patients must meet various criteria, demonstrate compliance, and make some big commitments in order to be eligible. I had to sign an agreement with my care team at Inova Fairfax’s Advanced Lung Disease and Lung Transplant Clinic in Virginia.

When I received the call on the morning of July 9, 2021, telling me that lungs were available, my family had already begun to prepare for the possibility that I wouldn’t make it to Christmas. The next day, July 10, my world changed for the better.

Next month will be the three-year anniversary of my lung transplant. In that time, my wife, Susan, and I have returned to traveling, and our first granddaughter, Abigail, was joined by a sister, Charlotte.

My transplant experience was very positive. I underwent testing beforehand that allowed my care team to make an informed decision, and they determined I was a good candidate.

The only time I wondered if I’d made the right decision was when doctors woke me up from anesthesia after the surgery. I wasn’t sure I was ready to take that first breath with my new lungs, but my concern lasted less than a minute.

When deciding whether to pursue a transplant, it can be difficult to confront all the “what-if” scenarios, such as: What if my IPF returns?

If you’re navigating these questions, be sure to ask your care team. Address all of those possible scenarios to ensure you have the best information and can make an informed decision.

Other questions to consider include: What difference would a transplant make in your life? What life events do you still want to experience? Have you talked with others who are awaiting a transplant or who have had one?

I co-host a lung transplant community support group meeting for the Pulmonary Fibrosis Foundation that meets every month via Zoom. Some attendees are curious about lung transplants, while others have received one. It’s an open discussion that allows people to seek and share information.

Helping address the questions surrounding lung transplant is one more way we can help each other 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.