Length of life with IPF

[Pete Besio]

Sylvio,
I don’t have any input regarding the effects of altitude on life expectancy of IPF patients.

I do have input on the “3 to 5 year” life expectancy however. The 3 to 5 year expectancy data is very dated. My IPF diagnosis was provided to me by my pulmonologist, and confirmed by 2 additional pulmonologist. All 3 of these doctors informed me that current medications (OFEV and Esbriet) and current treatment regimens generally provide a significantly longer life expectancy. With that being said, IPF effects each of us differently, including our life expectancy.
Best Regards,
Pete Besio

[Jerry Genesio]

Yes, Sylvio, I have read those diagnosed with IPF have 3 to 5 years as well. But my mother was diagnosed at 80 and lived to be 90. I was diagnosed at 81 so I plan to live to at least 91. I’ll let you know. 😉

[Penny Rylee]

Thank you for your response to the length of time people can live with IPF.

You said your mom lived for ten years. Can you describe some of the things she did that allowed her to live that long?

Was she she on Esbriet or Ofev?

And you sound like you are doing well. What are some of the things you recommend doing to stay healthy?

I’m trying to do everything I can to fight this disease.

Thank you so much for your positive and hopeful responses you’ve made.

Penny Rylee

[Jerry]

Good luck to you.  Why stop at 91 ?

 

[Jerry Genesio]

Thanks! I said “at least 91”. How far beyond will depend on a few variables. Actually, a lot of variables. 😉

[Fred Schick]

I have several people in my support group who are now 7+ years past diagnosis.  I am in my 4th year and am not on either Esbriet nor OFEV because my body could not tolerate either drug. From my personal experience, I believe one must participate in pulmonary rehab and exercise daily.  A positive attitude also helps.  Those people in my support group who well beyond the five year time-span are active, some are on oxygen therapy and others are have been on OFEV or Esbriet for several years.

 

[Christie Patient]

Hi Sylvio @risingzen,

The prognosis of PF has been discussed many times in the forums, and basically, our broad consensus has been that those numbers are part of a bell curve. Each case is different, and there is so much variability in this disease, it is really hard to predict the outcomes. Especially considering factors like when the diagnosis was given, comorbidities, other health factors, age, etc. Each person’s progression is a different journey than the next.

What I will say on the subject of elevation (since I do have some experience there…) is that living at higher elevations will not rob you of your time or make your PF progress faster, though you may feel the effects more, especially in later stages of the disease. In fact, having a body that is adapted to thrive at high elevations is GOOD for you and your lungs. High elevation living creates more hemoglobin, and therefore better absorption of available oxygen…. and there is the crux with PF–“available oxygen”. You are right that there is less at higher altitudes. A healthy set of lungs can make do with that. A compromised set of lungs will have a harder time, and THAT affects the whole body’s health. It also makes the heart work harder, and that can cause more problems. That’s where supplemental oxygen comes in. Using O2 provides what the atmosphere can’t for lungs that aren’t in great shape. The altitude itself has little to do with it, though at advanced stages of PF (like in my mom’s case before her transplant), her doctors were advising that she might need to move to a lower elevation in the future, as there’s only so much supplemental O2 can do. I hope that helps.

Christie

[Gordon B Sandmire]

I’m new to P F News and live at 3000 ft above sea level. I don’t notice much difference when I am at sea level except for sleeping. I am more comfortable without oxygen then.

[Christie Patient]

@gordonbsand my mom lives at ~6000 feet, and it took quite a long time before she could feel a difference. Within a few months of that, she was suffering at sea level. She was in end-stage pulmonary failure, and it was straight to the ICU to wait for new lungs. It’s important to pay attention to small changes like that so that you can adjust treatment if needed. For now, I am glad that you don’t feel a difference between 3000 and 0!

[Jofac O'Handlin]

Dear Contributors,

My observations.

I have survived over eight & half years since diagnosis in August 2013. Pre the antifibrotic medications. The consultant said about 6 years, a GP in our medical centre gave me the standard 3 year prognosis.

My sister, 11 years my senior,  was diagnosed (or we learned about it) about 9 months after me. She survived only 18 months.

As this disease is progressive, I suspect that it may depend on what triggers the investigation. I had suffered a bout of pleurisy some years earlier(2010?) and had a heightened awareness of lung health also due to my time working in power stations with much asbestos.

In February 2013 both my wife and I got pneumonia as a spin off a viral infection. My wife recovered reasonably quickly. I did not. This triggered further medical investigation. I was also feeling it, knew something was wrong by my declining athletic ability.

My sister led a sedentary lifestyle, so the lung vital capacity was not tested, until it affected her pesdestrian lifestyle.

So, how long from prognosis? This depends on many factors, but also how far the IPF has progressed at the moment it is discovered.

I think mine was found early, sister found late!

Regards to all.

Joe