Why it’s crucial to avoid judging or comparing treatment plans

Even within the IPF community, each of us is unique

Samuel Kirton avatar

by Samuel Kirton |

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Solutions are seldom permanent. I want you to let that marinate for a minute.

When I learned I had idiopathic pulmonary fibrosis (IPF) in January 2017, I was several months into my diagnostic journey. As I learned more about IPF and patient experiences, I concluded that there wasn’t a single permanent solution to the disease. Rather, each of us follows an individual treatment plan tailored to our specific health needs.

For that reason, it’s crucial to avoid making quick assumptions or comparing another person’s care with your own.

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Support from the PF community is a vital asset for our journey

Don’t rush to judgment

The pulmonary fibrosis community, like many other rare disease groups, tends to talk among themselves about PF. Often, individual experiences dictate how those conversations go.

I do follow many PF forums and social media channels, and I find it disheartening to see “expert” advice offered based on only a few sentences about one person’s journey. What’s most striking, to me, is when a patient writes that their pulmonologist has told them nothing more can be done. There seems to be an almost immediate groundswell of responses advising the patient to fire their doctor and get a new one.

There’s usually no exploration of the specifics behind the pulmonologist’s comment. Has the disease progression gone too far, eliminating other options? Is there a comorbidity affecting further treatment? Did the patient fail to follow the doctor’s instructions?

I’m confident that, in most cases, firing your pulmonologist isn’t the best solution. So how do you temper that type of advice? A more thoughtful response might be asking the patient if they’ve considered seeking a second opinion.

Wait, there’s more

I’ve taken many medications, both before and after my bilateral lung transplant in July 2021. That’s common among PF and transplant patients. But medications don’t work the same for everyone.

I began an antifibrotic medication within a month of my IPF diagnosis. I had two options — Esbriet (pirfenidone) and Ofev (nintedanib) — to slow the progression of fibrosis. Each drug had different possible side effects, and after my care team explained them to me, I elected to use Esbriet. That didn’t mean Ofev was inferior.

The medications we take serve a special purpose in our care plan. If we compare my medication list with that of another post-transplant patient, you’ll notice that several of the medications may be the same while others differ.

Each of us is unique, so it’s OK if we take different medications. I’m about 32 months post-transplant and take 14 medications each day, for a total of 35 pills. Since receiving my lung transplant, my medications have changed 113 times.

Suppose your medication regimen looks different from mine: That doesn’t mean your care team is wrong. Some of the medications prescribed to keep us alive post-transplant are brutal on other parts of our body, causing various issues that may necessitate different treatments.

For example, one of the medications used to prevent rejection of my donor lungs is Prograf (tacrolimus), which may lead to diabetes, nervous system problems, and kidney issues, to name a few. Fortunately, I didn’t develop diabetes post-transplant, though I did experience tremors for a brief period. My most significant issue is stage 3B chronic kidney disease, which causes moderate to severe loss of kidney function.

To reduce damage to my kidneys, my Prograf dosage was reduced and supplemented with Rapamune (sirolimus), another immunosuppressant. The change allows my care team to maintain the same level of immune suppression while protecting my kidneys.

This combination may not work for anyone else. That doesn’t mean you’re receiving the wrong medication or that your care team is wrong. They may see something in your history that makes a combination like this one unwise.

Seek to understand

Ask questions about the medications you (or others) are taking to better understand your journey. Work to withhold judgment of another patient’s care or treatment plan based on information garnered from a few sentences on social media.

I think you’ll be a happier patient. I know learning this lesson has helped me over the past seven years. Sharing this with you 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.


Kenneth G. Horna avatar

Kenneth G. Horna

I thought I read somewhere that those of us diagnosed with IPF, were not able to get lung transplant. Please send an answer. Thank you.

Samuel Kirton avatar

Samuel Kirton

Hi Kenneth,

Thanks for reading my column and for your comment. I was diagnosed with IPF and did receive a bilateral lung transplant. I am not sure what the source of your information was but as a general statement an IPF patient can receive a lung transplant. There may be others factors which limit a persons ability to receive a transplant.


Randall Thornton avatar

Randall Thornton

Hello Sam, I am going to combine your 2 postings today for questions. With the rx for people, that is so true. Some of us have more problems then just PF, so need different rx's. I personally have heart problems. I have Afib, Cad and degenerative heart disease. This gets me alot more pills to begin with. Between that, the PF and some other stuff, I take 22 pills/day. What gets me about people with IPF, how can you not need oxygen? I started out at 5L back in 2020. As of yesterday, I am at 10L:on the home compactor. As you may remember, I lost 1 lung in 2020 and the other is slowly leaving. At my last appointment, the doc said I am at about 1/2 a lung left. She is calling it rapid advancing PF.. If it keeps going like it has, I will be put in hospice. Needless to say, I don't go anyplace.
Second posting, people telling you what you have. I remember after the surgery to take out the one lung, they sent it to Rochester for testing. When the diagnoise came back, one of the doc came into my room to tell me I have IPF. I asked, what is that. He said it is Indiopathic Paulmanary Fibrosis. He went to leave and I asked him to explain. .He said they think it was caused by chemicals. I couldn't remember working with chemicals. The more I thought I remembered I had worked for Owens Corning Fiberglass in 1977. They didn't give you any type of protection. I couldn't believe it had stayed in my system all those years. What I am saying here is that I had to about drag it out of that doc to find out what I had. When he told me it was fatal and no cure, I asked how long di I have. He said 3-5 years. I am now in year 4.That's when I broke down and started crying. No more visit the grandkids or kids since they all live to far away and over the mountains. I cannot have any surgeries because every doc I have said I wouldn't survive.
So, that is my thoughts for today. Hope all has a great day and the rest of your lives. Randy.

Samuel Kirton avatar

Samuel Kirton

Hi Randy,

Thanks for reading my column and for share your comments. Admittedly you are in a difficult position. If you can ask that doctor to clarify it might be helpful to you. Labeling your PF as idiopathic by definition suggests the cause is unknown. It cannot be both idiopathic and attributed to a cause such working with fiberglass. The path of this disease is different for everyone and the 3-5 projection is both dated and often not accurate. Please continue to come back and let me know how you are doing.

Sam ...

John Fromularo avatar

John Fromularo

Good article. I am 4 years as PF possibly from scleroderma. I've given some thought to transplant of that becomes necessary. Do you feel it is worth the physical challenges? Obviously you are still here. How is your quality of life?

Samuel Kirton avatar

Samuel Kirton

Hi John,

Thanks for reading my column and your question. I do feel it is worth the physical challenges. I have been able to experience things I would have missed out on had I not received a transplant. My quality of life today is much improved over my pre-transplant life following diagnosis.

Sam ...


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