We shouldn’t take what the internet says about IPF/PF as the gospel from on high… There should be a grain of salt that comes with it. But we shouldn’t ignore it either.
The biggest and most frequent fear I see voiced in support groups is an honest one. Those who have recently been diagnosed always, always, always ask about life expectancy.
To be honest… Why wouldn’t they?
Who wouldn’t rush straight to google and type in “Pulmonary Fibrosis” after learning they have this relatively unknown disease… I certainly did.
What did I find?
Right there in front of me… well after scrolling past five advertisement search results (thanks google.) I found that scary sentence, “The estimated mean survival is 2-5 years from the time of diagnosis.”
Those words are enough to take make anyone slump in their seat and drop the “f” bomb in a slow drawn out fashion.
Which inevitably leads patients to question their doctor. Wanting desperately to know how long they have left.
Some doctors will rattle off the established 2-5 year range. Some will give a lower or perhaps a little higher number; depending on what they see on your test results.
But in my opinion the best answer is what my doctors told me. “We don’t know.” Because that is the honest answer.
As soon as someone asks about life expectancy in a support group, there are a ton of folks telling them how long they have lived with this awful illness.
“Eight years”, “eleven years”, “five years and still no oxygen”, “seven years and only on three liters per minute.” etc, etc.
All of which are amazing and encouraging. It is what a person needs to hear so they don’t just lay down and wait for the end.
On the other hand though. I don’t think we should ignore that 2-5 year mean either.
Mean in the area of statistics is just another word for average. You total up all the values you have and then divide that result by the number of values you used. 1+2+3+4+5 = 15/5 = a mean of 3.
2-5 years is scary… but we know that to get that number some folks lived shorter lives and some lived much, much longer.
Which basically translates into “nobody knows for sure.”
Yes you will hear of doctors who guessed their patients remaining time almost exactly. But those anecdotes are still just that… guesses.
We all fear that our number of days will fall into the short term category. While we look for reassurance that our number of days will be on the longer end of the scale…
But, we can’t ignore the fact that some of us just don’t get as long as others.
I had less than 2 years after my diagnosis. The only reason I am here right now is because of my donor. If not for her I would have most likely breathed my final breath in March of 2018.
That’s not hyperbole… I was attached to everything my amazing medical team could hook me to. But there’s no way I was ever walking out of that hospital with my original lungs intact.
I say this not to scare, but hopefully to motivate… The 2-5 year mean is not guaranteed and you may very well be blessed with longer than that.
But, you need to take a shortened life expectancy into account. If you want to beat the odds… you need to be aware of them and all that you can do to improve your chances.
Find doctors you trust and listen to them. Loose weight if you need to. Eat those calories if you need to gain. Take your meds. For God’s sake stop smoking.
Exercise… Exercise…. Exercise….. whatever you’re capable of doing… Do it.
Stay in contact with loved ones. Join support groups. Ask questions. Find some joy in each and every day. Seriously… its there just look for it.
The reason I am still here, even though my clock ran out in 2018, is because I did exactly this.
I would not have made it to transplant, heck based on my numbers I wouldn’t have even gotten a transplant, if I hadn’t lived with the realization that tomorrow isn’t promised. That I needed to do all I could to see it.
So I guess basically my advice, for what its worth, boils down to this. Take that 2-5 year guesstimation, use it for motivation, be proactive, and I promise two things will happen.
You will increase your odds of living longer and the time you do have will be a of a much better quality of life than it otherwise would have been.
Thank you for this perspective. I did exactly as described when I was diagnosed. Then called Mayo clinic for second opinion apt. They confirmed with biopsy in 2017. I was over 2 years stable on Esbriet then just fell off a cliff last May during a golf trip to Las Vegas and Palm springs CA. Been on exygen 24/7 since. Hospitalized 3 times since. Now at 10 lpm oxygen at rest and 14 on treadmill. Made transplant list Nov 1, 2019, dispite my age of 73. Had one false alarm for new lungs 3 weeks ago. Now still waiting. Getting weaker. Harder to exercise. Trying to remain positive.
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You are very welcome. Hang in there. When I was recovering from transplant there was a lady in her upper 70s lapping me during our walks. There’s always hope.
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Thank you. =)
For someone who was diagnosed with IPF in August 2019, I thank you for this. I too googled and saw the 3 – 5 years and have been confused and in denial. Your article has really put things in perspective for me. Starting today instead of stressing and worrying, I will make each day count. Thank you.
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You’re very welcome.