Navigating vaccine recommendations as a PF patient

Vaccines are a routine part of the pulmonary fibrosis (PF) journey, regardless of where you are along the path. However, recent changes in vaccine guidance from the U.S. Centers for Disease Control and Prevention (CDC) have caused some confusion.

When I was diagnosed with idiopathic pulmonary fibrosis in January 2017 at Inova Fairfax’s Advanced Lung Disease and Transplant Clinic in Virginia, I made an agreement with the clinic that covered everything from keeping my appointments to completing required medical tests and procedures. That included staying current with my vaccinations.

Anyone in the PF community, including caregivers, should consult the patient’s care team for guidance on vaccines. As you’ve probably noticed, the rhetoric over vaccines has increased in recent months, and subsequently, I’ve seen more people in PF groups across the internet discussing the issue. I’ve seen arguments both in favor and against getting vaccinated.

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Before my bilateral lung transplant in 2021, my care team wanted to ensure that no stone was left unturned before I was considered for a transplant. I was 59 years old at the time, and most of my vaccines were current. The immunizations I hadn’t gotten yet were promptly addressed. Getting those final vaccinations, along with other requirements, were part of the transplant committee’s decision-making process.

After my transplant, vaccinations became more important. Solid organ transplant patients are immunosuppressed on purpose to reduce the risk of organ rejection. This immune suppression is regulated by medications.

How I see it

So what has changed? The CDC’s current recommendations for making vaccination decisions emphasize shared clinical decision-making. “Unlike routine, catch-up, and risk-based recommendations, shared clinical decision-making vaccinations are individually based and informed by a decision process between the health care provider and the patient or parent/guardian,” the CDC’s Advisory Committee on Immunization Practices wrote. This approach was integrated into the CDC’s vaccination guidance schedule published on Oct. 7, 2025.

A number of the comments I’ve seen that were opposed to vaccines often mentioned the COVID-19 vaccine. The COVID-19 vaccine does have side effects, like any other medication. When my case went before the transplant committee in March 2020, COVID-19 had just started to circulate globally. I was approved for a deferred transplant. By the time I was listed for transplant in March 2021, I had already received the COVID-19 vaccine.

Will you be denied approval for a lung transplant without a timely COVID-19 vaccination? That’s a question for your care team. Asking it in an online discussion forum will undoubtedly generate responses, but unless one of those responses is from your care team, you might not get an answer that considers current guidance.

Use the newly revised guidance to develop a list of concerns and questions for your care team. This applies to any vaccine or procedure you encounter on your health journey. As for me, I’ll get a COVID-19 vaccine booster this year. I’ve consulted both my care team and my research team, as I’m currently participating in a research study. I’m doing my part to protect the lungs given to me by my donor. It’s how I 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.