After a bilateral lung transplant, I face a narrowing bronchial stem

A bronchoscopy will determine whether a stent helped to reverse the problem

Samuel Kirton avatar

by Samuel Kirton |

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For those who may be reading my column for the first time, it may be helpful to understand where I’m at in my medical journey and how it began.

In late 2016, a chest X-ray indicated that something was wrong with my lungs. I was referred to a pulmonologist, which led to a referral to the Advanced Lung Disease and Transplant Center at Inova Fairfax Medical Center in Falls Church, Virginia. On Jan. 31, 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF).

My IPF progressed until I was listed for a bilateral lung transplant in March 2021. At the time, I required 7 liters per minute of oxygen just to climb the stairs at home. I received a call on July 9 of that year from Inova telling me they were ready, and I received new lungs the next day.

A routine post-transplant bronchoscopy in December 2022 revealed that my left bronchial stem had narrowed at the point of the allograft, or transplanted tissue. I was referred to Kevin Duong, an interventional pulmonologist, who over the next four months conducted several balloon dilations to stretch the bronchial stem to an appropriate size.

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Last May, the bronchial stem had closed to about one-third of the size of a drinking straw, or about 3 millimeters, so Duong decided to insert a stent. This stretched my bronchial stem opening to 13 mm, which immediately made a significant difference in my spirometry results.

But the stent placement came with challenges. My body treated it like an intruder by increasing the amount of mucous around the device, requiring twice-daily breathing treatments with a nebulizer.

The stent also had to be examined for what can best be described as a cleaning. For all its benefits, the downside of the stent was the ability of bacteria to colonize around the foreign object. This cleaning also took care of excess mucous and any areas where the bronchial stem had started to grow over the edges of the stent.

While it might have been a coincidence, every time the stent was inspected, cleaned, and replaced, I developed a low-grade fever, chills, and fatigue. It felt like the stent was new again and my body was working hard to reject it.

Then, on Dec. 13, the stent was removed. Only time will tell if it worked well or not.

Will conditioning work?

You may be wondering why the stent would be removed if it had helped to improve my spirometry numbers and retain the opening in my bronchial stem. That’s because it was intended to be a temporary device to condition the area around my allograft to maintain a proper opening.

With the stent removed, doctors wanted to determine whether the area around my allograft is properly trained. This procedure is called a rigid bronchoscopy. This time, I had no chills, fever, or fatigue. I did have a raspy voice for a day, but that’s to be expected following a rigid bronchoscopy.

To determine whether my bronchial stem is staying open as it should, I’ll have a flexible bronchoscopy on Jan. 24. Every patient is different, so there is no guarantee the stent training will be effective. But it was the best option for me when I  faced a rapidly narrowing bronchial stem between balloon dilations.

If Duong determines during the flexible bronchoscopy that my bronchial stem has narrowed, I’ll have another balloon dilation and we’ll have to decide whether or not to place a new stent. I’m hopeful my bronchial stem responded well and was properly trained. If not, I believe a new stent is likely the best solution for me.

Embracing the best solutions on this journey is 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.

Comments

Beth Maccrindle avatar

Beth Maccrindle

Thank you for publishing your journey. As I just got on “the list” in Cleveland, knowing what future issues I may endure helps me understand what kind of journey I could possibly have. If I feel symptoms once transplanted, I can ask my doctors about this.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Beth,
Thanks for reading my column and your comment. You make an excellent point that communication with your care team is important. Even something which you feel is not significant by itself may be recognized by your care team as something requiring more attention.

Sam...

Reply
Mark Davis avatar

Mark Davis

Sam,

Hang in there my friend. You have helped so many of us who are also on the IPF journey.

Mark

Reply
Samuel Kirton avatar

Samuel Kirton

Mark,
As always thanks for reading my column and for your kind words.It is incumbent on each of us to help each other.

Sam ...

Reply
Patrick Norton avatar

Patrick Norton

Sam, sorry to hear about your treatment difficulties. It sounds like you have access to excellent medical advice and physicians, which is always a good thing no matter what the diagnosis. Keep fighting, Sam, and keep letting us know how you are doing. Most of us are sailing in your wake, so your experiences can help us navigate our way through this unforgiving and unrelenting disease.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Patrick,

Thanks for reading my column and your kind words. Each of us on this journey have the ability to provide insight for others. Each journey is unique yet there is some overlap in the experiences which are worth sharing with others. Please come by on occasion to let me know how your journey is going.

Sam ...

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Amy Walker avatar

Amy Walker

Sam, I am a 70 year old woman with NSIP. I was diagnosed in March 2023 with misdiagnosis preceding that time. By Gods grace my oxygen levels are good and I have great care from Mayo Clinic in Jacksonville, FL. I will pray for your surgery and recovery. This disease teaches me something new every day. Some lessons I don’t want to learn. We are all in God’s arms as we take this journey.
You are a brave soul. May God bless and keep you.🙏

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Amy,

Thanks for reading my column and your comments. This disease, even post-transplant, teaches me something new every day. Some of the medications we take have a negative impact on other systems in our body. They serve the purpose for which they are prescribed. While the medications I take now are necessary to prevent of reduce the chance of rejection they may impact kidney function or bone density for example. Please come back on occasion and let me know how you are doing.

Sam ...

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