Q&A with a Pulmonologist: What IPF Patients Want to Know

Q&A with a Pulmonologist: What IPF Patients Want to Know

After my single-lung transplant in December 2015, I was invited to participate in a panel of idiopathic pulmonary fibrosis (IPF) and lung transplant patients who had previously taken the anti-fibrotic medications Ofev (nintedanib) or Esbriet (pirfenidone).

My pulmonologist had asked me to take part in a conference sponsored by the American College of Chest Physicians and the American Thoracic Society. I told my story to representatives from Genentech and Boehringer Ingelheim, the manufacturers of Esbriet and Ofev, respectively.

I arrived early at the event to listen to some of the speakers. The Cleveland Clinic’s Dr. Brian Southern was one of the medical experts presenting, and I observed the passion he had for his research.

Later, I was present when he addressed a pulmonary fibrosis support group meeting. I was impressed by his ability to clearly communicate his research to medical professionals and patients alike. I began to follow him on Twitter (@TodayIPF).

I am grateful to Dr. Southern for agreeing to participate in a Q&A session for this column.

As a co-moderator of the Pulmonary Fibrosis News Forums, I am often asked how diagnostic procedures differ between pulmonary fibrosis and IPF. I was curious about this, too. Dr. Southern replied, “Pulmonary fibrosis can have many causes. Our main mission is to determine whether the patient has IPF or one of the other causes of pulmonary fibrosis — this has big implications for prognosis, planning, and treatment.”

“If we suspect an autoimmune problem is causing the fibrosis, we may do a series of blood tests to try to make a diagnosis. If we suspect hypersensitivity pneumonitis or infection, we may perform a bronchoscopy. A diagnosis of IPF can often be made by identifying certain features on the CT scan and excluding the other major causes of pulmonary fibrosis. Occasionally, we recommend a lung biopsy for a definitive diagnosis.”

I recently read a paper published in the Cleveland Clinic Journal of Medicine titled “Idiopathic pulmonary fibrosis: What primary care physicians need to know.” The publication, which was co-authored by Dr. Southern, raised some questions for me. One of these is why some primary care physicians have difficulty identifying a specific interstitial lung disease like IPF.

Dr. Southern told me that the problem is with time restrictions for medical appointments. “Most primary care physicians and pulmonologists in the community are really good at treating common pulmonary illnesses like COPD or asthma. They are sometimes seeing 20 to 25 patients per day and have to try to make a diagnosis and treatment plan, often within a span of 15 minutes.”

He continued, “Many PF patients are misdiagnosed with COPD or asthma, and only when these patients don’t respond to treatment do they seek the advice of a specialist in PF.”

Dr. Southern explained that one of the reasons he published the article was to educate community doctors about when to refer patients to a PF specialist.

As a single-lung transplant patient whose left lung is still fibrotic, I have often wondered why I wasn’t prescribed Ofev after my transplant. Dr. Southern explained, “Both Ofev and Esbriet may impair post-operative wound healing or cause problems with the engrafted lung. For these reasons, some transplant physicians are hesitant to continue with antifibrotics after a lung transplant.”

Alongside his research and clinical duties, Dr. Southern also serves as an assistant professor of molecular medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University.

As a former educator, I highly respect his ability to build a rapport with patients, peers, and students. As a member of the IPF community, I feel fortunate to have Dr. Southern on our side diligently working toward a cure.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
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Mark is a survivor of Idiopathic Pulmonary Fibrosis and subsequently a single lung transplant recipient. He is a former educator and now has been offered an opportunity to share his journey with the readers of Pulmonary Fibrosis News. Mark resides in Cleveland, Ohio and is an avid sports fan supporting the professional teams in Cleveland. Mark has not let his diagnosis curb his enthusiasm for life.
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15 comments

    • Mark Koziol says:

      Hello Carol, thank you for reading and commenting on my column. I am glad you found this site as well. Please check back in. Best wishes, Mark.

    • Mark Koziol says:

      Hello John, thank you for reading and commenting on my column. I appreciate your viewership on PF News. Best wishes, Mark.

  1. Christine Parry says:

    Enjoyed reading about your progress, stay well. I was diagnosed with IPF nearly two years ago and just have been forgotten about for over a year not seen any medical professionals at all so sad.

    • Mark Koziol says:

      Hello Christine, thank you for reading and your comments. I am not happy to hear you have not seen a medical professional in over a year. Please call someone and try to make an appointment.You can look on the Pulmonary Fibrosis Foundation page for a care center near you. I hope you get in soon because you are worth it! Take care, Mark.

    • Mark Koziol says:

      Hello Georgene, thank you for reading and kind comments. Thank you for all of your support during my struggles. Mark

  2. Nan Martin says:

    Thanks Mark, my GP seems to know more than my respirologist. I am asking for a referral for one of the centers listed on the PFF (Canada) site. My husband has a friend who is a retired GP and he said that PF from radiation is hard to get a diagnosis because doctors don’t want to admit it happens, that “they” caused it. However there is much literature on it. I have not heard yet when I will be seen at the ILD clinic, wait-lists are long, wish me luck everyone and send prayers my way.

    • Mark Koziol says:

      Hello Nan, thank you for reading and sharing your story. Nan, I wish you much luck and you have my prayers. We are all in this battle together. I hope you get in soon and the scarring stops. Please stay active as possible and keep your spirits up. Take care, Mark

  3. Fran Johnson says:

    My husband, Randy, was treated for asthma, by a pulmonologist for over three years before another pulmonologist identified IPF after a lung biopsy in May of 2019. My husband died of IPF in early August 2019. I urge everyone to see a physician who has knowledge of this disease, it is devastating. Perhaps early intervention would have helped in our case, by the time the diagnosis was made, it was too late for us to have options.

    • Mark Koziol says:

      Hello Fran, thank you for reading and commenting on my column. I am sorry for your loss. I am also sorry for the late reply.
      Mark

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