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Life span
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I was diagnosed with IPF in 2003, probably had it longer. I was concerned about the 3-5 years. I went to Mayo to find out. I was diagnosed with another lung disease in 1973 that probably caused IPF ( not sure) but it meant that IPF was not the primary diagnosis. I had problems breathing for about 5 years, but finally starting using oxygen in 2003. I took disability in 2009. I had trouble doing anything. Being on oxygen and medicine for a couple of years my health improved. I’m on 3L during the day and 4L at night. I’m 70 and have been on oxygen for 20 years and I’m in better shape than I was when I took disability. There are lots of things I can’t do but I can do almost anything I want too bad enough. I play golf once or twice a week wearing oxygen. My pace is much slower but the progression has really slowed. I have no idea on prognosis. It is just one day at a time and I’m grateful for everyday.
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Hi Pam. Having lost two friends to IPF at around 2.5 years after their diagnosis I was shocked and dismayed when I learned of my diagnosis on MyChart. I am now three years out (with a different pulmonologist) and approaching 68 years old. The disease has barely advanced at all in that time and I am still not on oxygen. I initially was on OFEV for a year but the side effects made life intolerable for me. I did not start Esbriet and two years later I’m still good. Exercise and keeping up muscle mass as I age has helped a great deal. I use Boost Oxygen when I need a little extra to recover after exercise, walking uphill or up steps, etc. Overall my quality of life is excellent. Some people have a longer form of the disease than others. Faith in God, prayer, exercise, a supportive community, and a positive attitude are all helpful to living a good life with IPF. Hope this helps. I’ll be praying for you.
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My mom survived 10 years from diagnosis! Never give up! I am three years post diagnosis and am going to beat this!!!! I truly believe a positive attitude plays a huge roll in our health. Prayers for you and all that have PF themselves or someone close to them!
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is it okay if o2 levels go to 92 when activity or walk?
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That is great, wish I could get those numbers.
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Pam and all others. I was diagnosed in 10 13. That’s ten years. I have been on OFEV for the last five or so. Although i am not active anymore and am on oxygen a lot, i am still on this earth. Don’t believe everything you read. Charles Gerson
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Yes many, 11 years and more. No one knows for sure when they are going to die, try not to put all your energy in feeling bad about the life you have and do the best you can now.
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My mother lived 10 years post diagnosis. I don’t think that is what actually caused her demise. She was 84 years old. Don’t ever give up and try to stay positive. That’s half the battle. As for myself I am in my third year since diagnosis. It will be four years in December. I feel great and tell myself I AM going to beat this!!! I wish you the best!!!!
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I was diagnosed in 2014 and on oxygen starting in January 2015.
Take Esbriet and nitric oxide from a pump connected to my oxygen system.I am stable with a 50% lung capacity.
I ride my Motorcycle weather permitting, also have a Convertible sports car that I drive.
I am 80 years old and a widower who loves riding my motorcycle, I strap my oxygen tank on the back and away I ride. Last ride was 96 miles, only stopped for gas and stop 🛑 signs.
With all that said, think positive and follow the doctor’s orders and enjoy your life.
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Hello Everyone, I chime in to these discussions once in a while.
I’m retired and will be turning 70 (Not Old) next month. I was diagnosed back in July of 2018 and was put on OFEV in January 2019. Just recently I’ve been able to cope with the side effects of this medication.
My Mom died of this disease back in 2000, and back then there were no anti- fibrotic medications.
The doctors treated her with Steroids, she lasted 10 years.
As for me, at first I was a little depressed sitting at home by myself always on the computer looking up this IPF disease to see if there was anything new in way of a cure, but to no avail . So I said to myself, self, its time to get off your A$$ and do something rather than moping around. So I planted a vegetable garden in our backyard, and when I went to the Garden Center to buy our vegetables, I asked the owner for a job. Since I was in construction most of my life, I figured why not. I told the owner that I know how to drive dump trucks, and operate heavy equipment. He gave me the job on the spot. It’s a part-time gig, but at least it keeps my mind off of the inevitable. I meet new people every day and have a great time with the people I work with. At the end of the day, that’s what it’s all about. Basically we all have a cross to bear and this is ours. So live life to the fullest and do the best you can with what you are given. What I’m trying to say is that every person is different and responds differently to this disease. Find something you like to do and do it.
By the way, I have to give my wife a special thanks for being there for me while I am going through this ordeal.
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Pam, every ILD is different. I was diagnosed in 2016 and I knew I had a lung issue since I play hockey. It was progressing fairly rapidly so I went to the pulmonologist had a CT scan and got diagnosed. I did some research and found a company with many documented cases of improvement with the use of Chinese herbs (WEI Labs). Their protocol is a 90 day treatment of the herbs. I was struggling to play hockey because of my breathing but the herbs seemed to stop the progression of the disease. I am 73 and I’m playing hockey but taking shorter shifts. I have had breathlessness since I had Covid and have had long Covid for 15 months. Several others on this site have tried the herbs with good results, one went off oxygen. They are expensive.
Denny
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Pam, every ILD is different. I was diagnosed in 2016 and I knew I had a lung issue since I play hockey. It was progressing fairly rapidly so I went to the pulmonologist had a CT scan and got diagnosed. I did some research and found a company with many documented cases of improvement with the use of Chinese herbs (WEI Labs). Their protocol is a 90 day treatment of the herbs. I was struggling to play hockey because of my breathing but the herbs seemed to stop the progression of the disease. I am 73 and I’m playing hockey but taking shorter shifts. I have had breathlessness since I had Covid and have had long Covid for 15 months. Several others on this site have tried the herbs with good results, one went off oxygen. They are expensive.
Denny
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3-5 is just numbers
I am 80 years old and have had IPF since 2014I am on oxygen continuously but can still get out and do some things like shopping but just have to walk slower or use my electric scooter.
So just eat healthy, get some beetroot capsules from the store, I ordered mine from Amazon. They help your energy.
Find a good pulmonary doctor who can treat you and you can live a long life, btw did I mention I still ride my motorcycle some, just have to take my oxygen bottle with me.
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Alex i really understand where you are coming from as I got diagnosed with IFP 4 1/2 years ago but I got on the antifibrotics immediately and I am so glad I did as i am still in relatively good shape. can go up several flights of stairs by taking pauses or go for walks and nobody notices me breathing more heavily ex in cold weather which negatively affects the lungs. After years of infantile indoctrination into Christianity i finally became a free thinker in my 40s and no longer have to pray any of the gods to get better. I wish you the best and please get on the antifibrotics ASAP I find that pirfenidone has been a real lifesaver for me.
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I was diagnosed with asbestosis on September 9, 2017. My symptoms worsened over time until my pulmonologist prescribed Ofev, which I have been taking since roughly mid-2021. My symptoms are debilitating but have “stabilized” over time. My PFTs were once DLCO 32% down from original 58%, but have remained stable in the high 30th percentile since OFEV. Don’t get me wrong – I am on supplemental O2 24/7 4 sedentary 7-8 exertion and my exertional dyspnea is particularly a problem.
But with medication and care, it’s been almost 8 years for me. Mayo has as study saying ~10 years from diagnosis is mean death age for those with severe asbestosis. If the levee don’t break and the river don’t rise…. Good luck!
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The term “life span” is often used incorrectly. The actual term should be “average life expectancy” which normally quoted base on a specific age. E.g. the average life expectancy of an American male AT BIRTH is around 76 years. However, the average life expectancy of a 80 year old male is close to 88. The AVERAGE person will likely live that long; some will die sooner, some way later. Saying 5 years doesn’t actually tell you much except that you have about a 50% chance of living that much longer or more.
It is scary but not definitive. I found tables that note that 20-25% of patients live beyond 10 years.
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very encouraging post, as a freethinker I am practical facing adversity , have a great wife of 50 yrs etc helps me on.
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I was diagnosed in 2014 started Ofev in 2016. I wouldn’t believe the 3-5 year guess no one knows.
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I have extensively researched PF and the 2 slowing progression drugs and the studies and the drugs reversing scarring in mice and everyone else about PF and all the types of it. If it was on the internet I’ve read it.
The 3-5 years came from a old study done !y the Mayo Clinic and as Mayo Clinic is the gold standard most Pulmonologists won’t raise the life span years because they don’t want to give patients false hope, even though the survival facts clearly are longer now.
Patients are taking care of themselves better and better, month. by month now. New drugs with better results are closer and closer now more than ever. Early detection is lengthening life spans. More and more research monies are coming world wide as the more and more boomers are coming down with this, and they will not the status quo.
More and more talk is happening now about reversing scarring and being cured from PF, just like stem cells are curing COPD, even in advanced stages.
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Ill chime in by saying its absurd that those stats are even still on line, I was 5 yours into a diagnosis before i noticed anything at all. IGNORE 1000% all stats you read. they are not up to date in anyway at all, Do you and enjoy your life. I had my transplant 21 months ago and have never stopped doing since 2016. YES i have slowed down, but when i was on 10-15 ltr of 02 i traveled and worked 6 days a week and did not stop at all, I did pulmonary rehab 3 x a week and light weights 2x a week and traveled with 40 e tanks and 2 compressors, I controlled my disease, it didnt control me. Stay strong, exercise adn eat right and you will be fine,,,,,,
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It’s too bad the 3 to 5 year info is online. It may be true for some, but certainly not for all. Your reaction is common. I was given 3 years back in 2018. I happened to have had an MRI in 2008 for another reason that showed scarring in the lower lobes of both of my lungs. I was put on OFEV but could tolerate it even a reduced dosage. I got off. My breathing function was not low enough to warrant oxygen. I decided I would fight it. So far I am winning. I owe a great deal of my success story to having a positive attitude. That’s where I suggest you start. As you can see there are many “success” stories. I wish you well.
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I want to encourage you. I was diagnosed in 2017 and looking back had it at least a year prior. I have been doing well for the most part. On and off oxygen for the 8 years. I recently had a decline and ended up in the hospital. As a result I was approved for transplant, however, I am getting better so we are pausing the listing to see how I do. My oxygen needs have increased from where I was, but I am able to manage. I encourage you to follow your treatment plan and EXCERCISE. You can live a productive life if you work at it. That 3-5 year thing is old new…..
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I was also told 3-5 years at diagnosis. 1 year later told 1-2 years, now at 1.75 years I’m on the transplant list and without a transplant have less than 1 year to live. I was on OFEV, initially it helped slow the progression but then as my body got used to it the progression came back aggressively.
PF is lung scarring as if you have cuts in your lungs, but you don’t have cuts in your lungs but have something harmful to your lungs inhaled that triggers the PF scarring, but the body doesn’t turn off the scarring.
My body always healed very, very quickly from injuries – so my body is producing excessive scarring in my lungs to aggressively heal the trigger damage done to it, but will keep scarring until fully healed – but my lungs trigger damage is either staying there so it keeps scarring, or once scarring began body can’t stop it or both.
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