I’m Grateful for Doctors Who Understand IPF

Samuel Kirton avatar

by Samuel Kirton |

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On Jan. 31, 2017, Dr. Steven Nathan, a pulmonary disease expert, sat on a stool in a clinic room across from my wife, Susan, and me, and confirmed my diagnosis of idiopathic pulmonary fibrosis (IPF).

The gravity of my diagnosis hit Susan especially hard, to the point where every time I walked into the room, she burst into tears. Fortunately, we found good information at the Pulmonary Fibrosis Foundation and discovered the late Kim Fredrickson, who was a columnist here at Pulmonary Fibrosis News. We learned a lot about IPF in a short time.

My diagnostic team

I was diagnosed with IPF about four months after my primary care physician, Louise Reynolds, ordered a chest X-ray. She noticed some issues in my lungs, which concerned her enough to order a CT scan and refer me to pulmonologist Deepak Soni.

Soni immediately suspected pulmonary fibrosis. While sitting in the examination room with me, he picked up the phone and called Nathan to arrange the appointment that forever changed my life.

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When Susan and I reflect on that Jan. 31 appointment, many of our recollections exist as sound bites: “two to five years,” “no cure,” “crackles,” “get your affairs in order.” That was the scary part. Nathan talked with Susan and me about how unpredictable this disease is. We needed to prepare for the worst and plan for the best.

But this wasn’t the end; it was only the beginning.

My transplant team

Soon after that appointment with Nathan, one of Susan’s colleagues gave her a book titled “Guide to Clinical Management of Idiopathic Pulmonary Fibrosis.” When Susan brought the book home, we saw our sign: The authors were Nathan, A. Whitney Brown, and Christopher S. King.

My relationship with Nathan continues to this day. I also met Drs. Brown and King, who are a part of the lung transplant team at Inova Fairfax Hospital in Falls Church, Virginia. I got to know Brown through clinic visits and a clinical trial I was enrolled in. I saw King in the clinic almost every day when I was an inpatient following my bilateral lung transplant.

Each of the doctors on the Inova team has contributed to my care and were with me in moments I’ll never forget. Dr. Oksana Shlobin admitted me to the hospital the day before my transplant. Dr. Shambhu Aryal has spent time with me in the clinic and performed multiple bronchoscopies on my new lungs. Dr. Anju Singhal performed a bronchoscopy on my birthday last year and had the entire crew in the procedure room sing “Happy Birthday” while they put me under for the procedure. Finally, Dr. Daniel Tang performed my transplant surgery.

These are my doctors. I wanted to introduce you to them in honor of National Doctors’ Day tomorrow.

I am thankful for each of them and the skills they brought to bear for my care. As a patient, my voice is heard by each of them. They want to hear my concerns, understand any challenges I am facing, and treat me as an integral part of my care team.

My care team also includes physician assistants, nurses, social workers, respiratory therapists, and dietitians, but I will write about them in a future column.

To all my doctors, thank you for walking with me through the horrible nightmare that is IPF and helping me emerge into the sunshine. I understand my journey will continue to present new challenges, but I could not have a finer team to help me make every breath count.

To celebrate National Doctors’ Day, please tell me about your doctors in the comments below.


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.

Comments

Warren Allabastro avatar

Warren Allabastro

Had a single lung transplant 1/7/20 79 at the time turning 82 4/21/22. Doing well and happy!

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Warren,

I am glad to learn that you are doing well and more importantly you are happy.

Sam ...

Reply
Pieter G van den Assum avatar

Pieter G van den Assum

Thanks Sam. Well written and certainly bringing to the forefront the quality of Inova's team of physicians and the importance for the patient to be heard and be a part of the solution.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Pieter,
Thanks for reading my column this week. We have to be our own best advocates on this journey.

Sam...

Reply
Darlene Cochran avatar

Darlene Cochran

Amazing, I am 82 and have been told a transplant is not available at my age. So glad you had yours and still going forward. God Bless you!!

Reply
Samuel Kirton avatar

Samuel Kirton

Darlene,

Thanks for following my column. I had the care of an amazing team.

Sam ...

Reply
Alice Nesselhuf avatar

Alice Nesselhuf

My sister has been diagnosed with IPF. And I'm very disappointed in her Dr and the care he has prescribed ! He has only seen her once since the diagnosis . She is on a clinical trial for ofvet? Talks to them when they discuss her medicine, but no contact with the Lung Dr. Thank you for listing.

Reply
Samuel Kirton avatar

Samuel Kirton

Alice,

Patients need to be their own best advocates. As you offered no timelines I have no idea of the time frame which concerns you. You might find helpful information in the Forums section. I have added the link here. https://pulmonaryfibrosisnews.com/forums/

Sam ...

Reply
Craig Brennan avatar

Craig Brennan

I am turning 75 next week and was diagnosed with IPF in January 2012 and now am looking at a transplant. I feel like you have given me the inspiration I needed to keep me on track. Thank you Warren and good luck to you.

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Samuel Kirton avatar

Samuel Kirton

Craig,

One of the best parts of writing this column is helping patients share their experiences and allowing patients to find inspiration from others.

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