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Inverted Thinking about IPF
Like many people who have talked about the stunning moment when they learned they had this miserable disease, my first questions were: How do I slow it down? How do I find a good pulmonologist?
I should have also applied inverted thinking. Suppose I wanted to speed up the progression of fibrosis, what are the top five things I’d make certain to do? By inverting the question, we identify things to avoid.
Two disclaimers: First, my only credential for talking about IPF is that I’m still alive eight years after being diagnosed. Second, the logic of what to do also differs with each person. I wouldn’t torture myself with some of the treatments if they only offered me three more months of life; but I certainly would if they meant three more years.
Here are the top five things I would do to speed up this disease. Feel free to add to the list.
Have a few cocktails every afternoon. A growing body of research shows that chronic alcohol use not only harms the lungs, it facilitates the growth of scar tissue that is so devastating to IPF.
Under-exercise. Without exercise, you will weaken your respiratory muscles and make them less efficient at getting oxygen into the bloodstream.
Consume foods and drinks that increase mucus production. If you cut back on your water consumption and eat lots of sugar, fried foods, and highly processed foods, that should do the trick. Whole milk might help.
Hang out with big crowds of people. Standing next to two people may not put you at much risk for flu or Covid or RSV and the dreaded exacerbatory event they can provoke. But you can increase your odds if you mingle with a crowd of hundreds.
Ignore the support groups and chat groups where other people discuss their experiences. Sure, some of those people will advocate things that make no sense to you. However, many will have useful comments. Ignoring them will almost certainly enable you to stay unaware of medical developments, clinical trial opportunities, and things that helped other people like you. It will also shield you from the responsibility of sharing knowledge you have that might help them.
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4 Replies
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Hi, I like your approach! When I can change a perception that opens up other possibilities. Thank you!
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Thank you for sharing your thoughts. I appreciate your common sense approach. Many Blessings to you for a wonderful life.
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Hi John, I like your inverted thinking. It aligns well with the other side of the coin: intentional actions. I was diagnosed with IPF in 2022. My pulmonologist at Brigham and Women’s Hospital in Boston told me there were only two drugs that could help me stave off disease progression–OFEV and Esbriet, but that there was research being done towards a potential cure. On her advice, I started with OFEV (chosen because my identical twin sister with IPF had a bad experience with Esbriet/Pirfenidone). I also immediately signed up for a clinical trial, not knowing if that would have any benefit to me but thinking that it might help others if not me. My thought process was that I wasn’t badly affected by current symptoms so it would be great to keep as stable as I could while some brilliant scientist found a cure. In the meantime, I designed an action plan: 1) Quit work and its associated stress 2) Start walking in beautiful countryside, eventually leading to daily 5 mile a day walks 3) Stop drinking alchohol. (That was aided by the fact that drinking while on OFEV made me feel awful.) 4) See lots of friends and neighbors. I let them know what was going on but did not let disease overwhelm conversations. 5) Lost weight–about 35 pounds. An amazing thing happened: I started feeling better and looking forward to my clinical trial meetings. I eventually discovered after a year that I had been on the placebo, not the study drug, nerandomilast, but still had little decline in my lung function. The trial allowed me to continue after the first year, this time on the real drug. After 5 months on nerandomilast, my lung function in a number of areas actually improved. I know I have been incredibly fortunate and who knows for how long or if the improvement will last. My only advice would be to live your fullest life as long as you can. Just having hope is a powerful motivator and the actions I’ve taken along the way have been my way of finding a degree of control over the disease even when side effects made me feel bad. Good luck to all of you.
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Beautiful post John, thank you for taking the time to share them with us! I have no doubt it will inspire others, thank you for sharing 🙂
Char.
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