• robert-b

    Member
    March 9, 2023 at 5:54 pm

    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.

  • dub-karriker

    Member
    March 10, 2023 at 5:32 am

    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.

  • kim-morrison

    Member
    March 27, 2023 at 3:08 pm

    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!

  • sayee

    Member
    May 8, 2023 at 1:23 pm

    is it okay if o2 levels go to 92 when activity or walk?

  • chukegee

    Member
    May 9, 2023 at 2:16 pm

    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

  • christine-mccann

    Member
    May 9, 2023 at 3:03 pm

    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.

  • kim-morrison

    Member
    May 9, 2023 at 3:43 pm

    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!!!!

  • julian-bilier

    Member
    May 10, 2023 at 5:56 am

    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.

  • sam-bilotta

    Member
    May 13, 2023 at 4:07 pm

    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.

  • denny-eliassen

    Member
    May 16, 2023 at 10:33 pm

    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

  • denny-eliassen

    Member
    May 16, 2023 at 10:33 pm

    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

  • julian-bilier

    Member
    June 29, 2023 at 8:32 pm

    3-5 is just numbers
    I am 80 years old and have had IPF since 2014

    I 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.

  • paul-caden

    Member
    February 26, 2024 at 9:54 am

    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.

  • Bulldog

    Member
    February 27, 2024 at 7:05 pm

    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!

  • robert-gross

    Member
    February 28, 2024 at 4:34 pm

    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.

    • paul-caden

      Member
      March 16, 2024 at 8:33 am

      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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