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Life span
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I am 74 and was diagnosed Oct. 2017. Like just about everyone, I was told the median life expectancy was 3-5 years. Since I had no symptoms and my diagnosis was initially based on a CT scan of my abdomen due to kidney stones, I was told that my condition was caught early. To this day I have not received any prediction on how long I might have.
Aug. 2019 my sister (she was 77) recieved her IPF diagnosis. Six months later she passed. I later found out she had an earlier Enphysema diagnosis due to smoking. Being my sister was an extremely private person, she lived in another state, and we only talked every few months or so, she shared very little about how serious her condition was. I knew she was sick, but I had no idea how sick and that she would pass within 6 months of her IPF diagnosis. I suspect her Enphysema had as much, or even more, to do with her passing than her IPF.
I have no doubt my sister’s doctors told her how grave her condition was and possibly told her how long she might have. I can only imagine that it was much less than the typical 3-5 years.
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I’ll share my story. I was diagnosed with IPF in 2011. For some time now I’m been waking up thanking God for my “shiny new marble” and asking God to help me be a blessing to others this day. Several years ago I read of an individual who studied the life expectancy actuarial tables to determine the number of days, on the average, that he had to live. With this info he purchased that many marbles and placed them in a large glass jar in his downstairs workroom. First thing every morning he’d go down to his workroom and remove one marble from the glass jar and thank God for the new day asking Him to make him a blessing to others throughout the day.
In my case, as I said, I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2011. At the time webMD projected the longevity for IPF patients to be three to five years after diagnosis — just as many of you have read. It did not take me long to quickly figure out that my glass jar had been empty for quite some time. BUT every morning I can thank God for my “shiny new marble” — another day given to me as a gift from God. Daily my prayer is to be a blessing to those around me. God certainly is Good! These marbles help me to keep life in perspective!
So yes, one can live quite a while with IPF. I’ve been on oxygen now for about a year and doing quite well!-
You have a great attitude @dongraybill ! I have no doubt that will serve you well throughout the course of your journey with IPF. Thank you for taking the time to write and share your story — I appreciate your attitude and positivity.
Char. -
Thank you Don for a wonderful, uplifting post. I especially liked the quote “be a blessing for other”. I will try to do the same, and will keep Your Words in my heart. God bless you. Best regards, Ida
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Randy, I am not sure what you were diagnosed with or if you are taking either Esbriet or Ofev. My husband was diagnosed in October 2014 and he started out on the generic version, Pirfenex and then on to Esbriet; 6 years together. He is doing remarkably well and is Pulmonologist is very pleased as to how he is doing. He also got the 3-5 years statistics which obviously he has surpassed. I know that someone was frustrated that no one gave a study as to why 3-5 years is not correct anymore. I am not sure what or if there is a study. My husband asked his Pulmonologist if Esbriet is even working and not just all the other things that come in to play. The Pulmonologist just asked my husband why he would get off a winning horse?! I just know he is doing well and really no side effects other than some days he feels “fuzzy” which does not last longer than a hour or earlier on he got a bad sunburn. He now wears sunscreen. I hope this helps to remain optimistic as we are.
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Thanks so much Char and Ida for your kind words. In this IPF journey it is real easy to fall into the mode of simply trying to “survive” life. Instead I want to “thrive” in it. My shiny new marble each day helps me do that! Don
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When I was diagnosed with IPF (over 5 years ago) I, too, was totally set back by the 3-5 year median life span after diagnosis. Over the last 5 years I have determined the following facts:
1. The statistical analysis apparently was conducted on data from 1992 to 2003
2. Diagnosis of IPF was apparently made much later in the progress of the disease because of the lack of information about the disease and the inability to use equipment and methods that we now have to diagnose much sooner in the progression of the disease.
3. There was no treatment specifically for IPF. Treatments that were used were usually based on other forms of fibrosis which have since been proven to be ineffective for IPF. We now have two drugs approved for IPF that have been proven to slow the progression of the disease.
4. There have been no further studies on the mortality so we keep getting quoted the 3-5 year life span because there is no other study using more up to date information.
I challenge the Pulmonary Fibrosis Foundation to commission a study that will provide much more current and reliable information. Updating this outdated information is really critical for those who are recently diagnosed. You just have to look at the posts on this site and other forums to see the anguish that quoting this completely outdated information creates.
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@willyk
Hi William,
Thank you so much for sharing these important points about the 3-5 year prognosis! We often talk about how they’re outdated on this forum and it’s important not to go by just those numbers but we don’t often elaborate on why, so your post is very helpful. Thank you for taking the time to write it! 🙂
I’d also like to see the PFF amend their information on this. Hopefully soon!
Char.
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William, that is a great post!! Thank you for the up-to-date information. You are absolutely right that another study needs to be done, or at least doctors need to see this! I am sure you made many people feel LOADS better with this information. Have a great day, everyone. 🙂
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Hi, The 3-5 years is nothing but an old guideline that some doctors dont bother to correct so no one holds them accountable for anything that comes out of their mouths. The reality is that the 3 – 5 years was inaccurate even in the old days prior to new medication, because not all patients were diagnosed as soon as their disease started, many were late diagnoses which meant that IPF patients on average lived longer than those 3 – 5 years. So now that there are earlier diagnoses and better medication the life span is for sure longer than that. In any case, i believe the most important thing is to stop listening to these generalisations and live your life as best and as active as you can. Be proactive with your doctors, do some research and learn more about things you can do and take it one day at a time.
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Lnour, absolutely agree!
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Three to five year prognosis seems pretty accurate in my case.
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Jim–I am so sorry to hear about your prognosis. But for many the timing of prognosis is everything. Let me re-tell you my story. My father died of ipf in 2003. His sister died of ipf approx 2018. MY dad was 72 when he passed–my aunt was over 80.My dad was misdiagnosed by the veterans administration–when he received a correct diagnosis he was end stage—less than 6 months to live. So what have I done? I went to my primary shortly after my dad’s death (2003) and had a c-scan ran. It was negative. In 2019 I went back for another c-scan also negative. I also “blew” into the breath machine—which by the way they do not explain clearly. when you think you are no longer exhaling–you actually are because the instrument is so accurate. Diagnosis and early diagnosis is everything. My dad’s physician told him this nasty stuff was growing in him for a decade. How would he know that? I do not know–but he is an expert and was strident in his statement. Everyone should keep the faith.
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Hi everyone,
I believe the 3-5 years estimate given by a pulmonologist is a disservice to most patients. When I was diagnosed on October, 2020 and told I had 3-5 left to live, it triggered a series of reactions inside me which were mostly harmful. Fortunately for me, I had a supportive family who refused to accept this and pointed to my overall health. Since then, I have done everyone in my power to feel better. I had my 2nd set of breathing tests and 6-minute walk test last week. My lung functions have become stable and moving in the direction. My 6-minute walk test results also improved from 600 meters to 660. I walk 60k-70k steps each week rain or shine, freezing or in humid Houston heat. I am staying away from medicine for now. All the posts here have been a source of inspiration and encouragement for me. My thoughts and prayers go out to all those who are facing acute conditions. I believe most of us will easily beat the 3-5 years prediction and far outlive 5, 10 or 15 years. I know I plan to and unwilling to surrender to this terrible disease.
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Manzurul, that’s terrific! How do you get the inspiration to walk every single day? I am a 73 year old and was diagnosed in September 2020. I am struggling at 3 times a week. I walk at 115 steps per minute for 40 minutes at 2.8mph. So that would be 13,800 on my treadmill. Your total steps at my rate would be almost an hour and a half per day. Geez, if I could get to half rate??
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Hey @Carlo that’s not bad at all! 2.8 mph is a really healthy pace. 🙂 And I think if you tracked your steps throughout the whole day (fitbit, or pedometer) you would be surprised at how many you take outside of dedicated exercise time. That said, I also think it’s great that you’re committed to 40 minutes 3 times per week. Keep up the good work!
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Thank you Christie! I have a CT scan and a breathing test in April, so we will see what we need or could do to get that up a bit. I need a challenge to stay motivated….
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I was diagnosed in December 2020with a 50% life expectancy for 5 years. Very upsetting and depressing. However after seeking more info, it seems from and old CT that this disease started in 2010. That means eleven years ago. Also more tests showing it has progressed but not that bad as yet. Will be taking meds to slow it down. I plan on will sticking around long enough for a cure.
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Augusta, Glad to hear your optimism! I have a similar history. I was diagnosed in September 2020 at which time it was noted that I was probably with IPF in 2015. There has been some progression in the disease in the 5 years but at a slow pace…good news to me. I have a CT scan and breathing tests coming up in April so we will see what effect Esbriet has had on the disease progression.
Live one day at a time as much as the good Lord gives you…..
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I lost my husband, my soulmate last week to a combination of heart failure and PF. I am posting to actually let those with this horrible disease know that the lifespan is variable and not written in stone. My husband was diagnosed over 20 years ago when a heart attack revealed the crackling in his lungs. We had an amazing life and shared many adventures together. I can’t say the end wasn’t hard, but we did finally let hospice (frightened as we were of that very word) come in to help. So keep fighting and God Bless y’all.
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@edot Edward, I am so sorry to hear about the passing of your husband. It makes me happy to hear that he lived a long and adventurous life after his diagnosis. This disease is so unpredictable, it’s nice to hear stories of people who prove the prognosis wrong. I hope that hospice, as scary as it can seem, was a help to you both in making this transition. Sending you love and comfort during this time,
Christie -
@edot
I’m so very sorry for your loss. Please know that I am thinking of you during this difficult time. Amid your grief, I am so grateful you’ve taken the time to write us and help others based on your husband’s experience. I agree with you that lifespan is a variable, and it is always helpful to hear of others who endured IPF much longer than the prognosis. Thank you again and take good care of yourself.
Charlene.
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I had heard that endomethacin was bad for us with IPF, but I really need it for arthritis pain and inflammation.
Thanks,
Robert
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Pam,
Sorry to hear about your IPF diagnosis. I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis! I cried every day for the first 6 months. My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors. She also referred me for a barium swallow, which showed that I had terrible GERD, in spite of no symptoms. My GI followed up with an endoscopy which confirmed a “silent” GERD diagnosis, & I started on Prilosec twice daily. After a lung biopsy indicated I had the UIP type of IPF, I went to National Jewish Health in Denver for a 2nd opinion in June, 2016. The docs there felt that my IPF was not “typical” & felt that my fibrosis might have been caused by the untreated GERD causing acid to spill into my lungs. Upon their recommendation, I made the decision not to start medication but to have PFT’s & 6 min. walks every 4 months to closely monitor any deterioration. I am happy to report that 6+ years later, there has been no progression of my disease based on HRCT scans, PFT’s & 6 min. walks. I am not on medication (other than the Prilosec) & now have PFT’s & 6 min. walks every 6 mo. & an HRCT every 1-2 years. I also exercise regularly. 2-5 years is an average & does not apply to everyone. A lot depends on how early you were diagnosed, how severe your fibrosis is, & how well you take care of yourself with diet & exercise. Best wishes & welcome to the forum!
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Pam,
Sorry to hear about your IPF diagnosis. I was diagnosed in November, 2015 & was totally shocked to read the 2-5 year prognosis! I cried every day for the first 6 months. My pulmonologist is very pro-active & ordered bloodwork to rule out about 40 autoimmune disorders since I had no precipitating factors. She also referred me for a barium swallow, which showed that I had terrible GERD, in spite of no symptoms. My GI followed up with an endoscopy which confirmed a “silent” GERD diagnosis, & I started on Prilosec twice daily. After a lung biopsy indicated I had the UIP type of IPF, I went to National Jewish Health in Denver for a 2nd opinion in June, 2016. The docs there felt that my IPF was not “typical” & felt that my fibrosis might have been caused by the untreated GERD causing acid to spill into my lungs. Upon their recommendation, I made the decision not to start medication but to have PFT’s & 6 min. walks every 4 months to closely monitor any deterioration. I am happy to report that 6+ years later, there has been no progression of my disease based on HRCT scans, PFT’s & 6 min. walks. I am not on medication (other than the Prilosec) & now have PFT’s & 6 min. walks every 6 mo. & an HRCT every 1-2 years. I also exercise regularly. 2-5 years is an average & does not apply to everyone. A lot depends on how early you were diagnosed, how severe your fibrosis is, & how well you take care of yourself with diet & exercise. Best wishes & welcome to the forum!
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I’m so happy to read that your doing good and thank you so much for the information. I’m trying to understand and learn about this and it’s very hard to take in. I just want to help her and make her better but reading other people’s experiences with dealing with this makes me feel better to know she can make it and keep her mind focused on getting better.
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Hi Pam,
I was diagnosed April 2021, so pretty recent.
I was told the same thing, three to five years. That was quite shocking.
The more I investigated that statement the more I realised that this is an average. The data has been collated over many years, including data from before any drugs were available to us. Certainly OFEV was not available to anyone in the UK unless you were really bad with your FVC something like 40% (I stand to be corrected here).
Since 14th February this year, with recommendation from the Consultant, it is available to anyone who has lost 5% lung function on the initial test or the last test.
This has happened to me and I am now taking OFEV (Nintedanib). I was worried about the side effects, but so far afetr a week I have had none at all so I am indeed lucky.
This 3-5 year statement all depends on your personal circumstances. Age, environment, if you were/are a smoker, exposed to dust, chemicals or other nasties like asbestos all your life.
I expect your consultant has discussed this with you.
As you see from the replies on here, this average has gone way out.
I am also chasing pharmaceuticals all over the world to find out where they are with drugs that can stop and reverse our condition. They may not exist right now, but they are coming!
Above all stay positive, be happy, there are drugs that can help and with this great Forum there is great advice and support.
Regards
Jeff
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I was diagnosed 16 years ago and I have been on oxygen 24 seven for a number of years now. I have been on Esbriet since it has been approved and take it religiously. I highly recommend pulmonary rehab which I have done several times and plan on doing again. Mindfulness has also helped. At 76 I feel the idea of a lung transplant is not for me. Good luck and you do have reasons to be optimistic.
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I’m convinced that the 3-5 years can be misleading. For many people, there have been years and years of bouts of shortness of breath, dyspnea, coughing, etc., and the person is diagnosed with pneumonia, the flu, bronchitis, or some other respiratory illness. Many suffer for a decade or more with those symptoms until they actually see a pulmonologist who orders the required testing which confirms IPF. My sister passed within days of her diagnosis of IPF. She walked into the hospital with yet another bout of ‘bronchitis,’ one of many, many rounds of that misdiagnosis over the years. She was hospitalized, grew steadily worse, and died within a few days of her hospitalization.
My diagnosis was 10 years ago, initially diagnosed by an ER doctor who looked carefully at my x-Rays after a bout of difficulty breathing. He referred me to a pulmonologist. I had X-rays, CT, and VATs over the next year which confirmed the diagnosis. Because my diagnosis was made when I barely showed honeycombing in my lower lobes, and had few symptoms, I have had little concern about the 3-5 year life expectancy because my disease advanced slowly. However, within the past six months, there has been a noticeable change, intensified symptoms, so maybe I am now at the 3-5 year threshold.
Only God knows!
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I absolutely agree with you @ebeth! The 3-5 year prognosis was published and made public before the two FDA antifibrotic drugs were approved, so the data is very much outdated but unfortunately its still readily available on Google and many other sites. Hope you continue to do as well as possible with this disease, thanks for sharing a bit of your story with us.
Char.
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Hi All,
Aside to all the known drugs that slow progression for us all, there is some encouraging research developments.
I dont profess to understand it all, but if you care to Google “REMAP-ILD” then hopefully you will see what is happening right now.
REMAP is a reconfigurable (that’s what the R is for) method of speeding up drug trials.
It was used for COVID, and that is why the various Covid drugs came to market as soon as they did.
We are all hoping that REMAP-ILD will get a drug that A) Stops the progression, and B) reverses the fibrosis.
Wouldn’t that be something?
PS I would be happy with (A) right now.
Jeff in England.
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