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    • #33056
      Nina Merendino
      Participant

      I was diagnosed in 2018 and still have no symptoms. Does anyone else out there like me???? I feel blessed but waiting for the “ shoe to drop.”

    • #33076
      Jofac O’Handlin
      Participant

      Hi Nina,
      I will say hello.
      IPF has been described as a cruel complaint. The progressive nature slowly or quickly robbing one of your physical abilities. We all, on this site, probably wonder what caused the investigation into your health that revealed your diagnosis. Mine was a slow recovery from a bout of pneumonia (that affected my wife as well).
      I have found the early stages quite benign, I continued running with gradually reducing ability for six years, eventually retiring when I found the hills too hard and could not keep up with my training partner.
      Three futher years on, like today, I was obliged to stop several times walking slowly up a hill that I would hardly have slowed down for 10 years ago.
      I think that now I have entered the ‘cruel’ stage.
      IPF seems to be a multitude of lung diseases and progress is highly variable.
      Enjoy the fact that your symmptoms have not developed in 4 years.
      Good luck,and best wishes.
      Joe

      • #33126
        Diane D
        Participant

        I was diagnosed in 2019 and really no symptoms either. My first breathing test was ok but my 2nd was better, normal. I just had my 3rd and awaiting results. I read that the emergence of CT scans has resulted in more diagnoses of ILD and other lung diseases. It could be that many of us have some version but never have the symptoms. Personally I believe I’ve had lung issues since childhood pneumonia but I never had a CT scan till 2019. I had bronchitis many many times since my teens but none since the pandemic probably because I wore a mask regularly. I did get COVID in July w a dry cough but it only lasted a week or so and it was very mild. I did take Paxlovid and I think it helped quite a bit. But anyway, your symptoms may remain non-existent. There is that hope.

        • #33127
          Millie
          Participant

          The bottom line with PF is it’s usual slow progression in the early stages. It is quietly scarring your lungs but you are unaware because it hasn’t caused symptoms yet. Even now, when my oxygen drops into the 80’s, I am symptom-free. Just like cancer, by the time you have symptoms, it is already well-advanced.

    • #33083
      Roger Cecil
      Participant

      I was diagnosed about a year ago and, outside of a little shortness of breath, I haven’t really had symptoms.  If a random CT scan of my heart for diagnostic reasons hadn’t identified scarring on my lungs, I wouldn’t have known.  I feel blessed and am exercising, taking my meds and vitamins, keeping up with my vaccinations and hoping for the best.
      Best wishes for you staying symptom free!

    • #33084
      Cheryl thomas
      Participant

      Hi Nina

      Mine was found in 2016 after a bout of pneumonia. Was asymptomatic until this past year..I was a swimmer. Can’t swim now. Wearing  oxygen at bedtime for the past month..I am involved in a clinical trial at the University of Pittsburgh. I just started getting the real medication which is an IV every month. Hoping it slows it down, I still go to an exercise class at my church and also cardiac rehab because I just had stents put in June of this year. Please stay active. Learn a you can and if possible get in a clinical trial. I am now testing fir a lung transplant. Not sure if I’ll qualify though. God is in control and I trust in his decision. Take care and keep reading the forums they are very informative. Also get hooked with a support group. If you can’t find one let me know you can join the one I’m in. Cheryl

       

       

    • #33087
      Nina Merendino
      Participant

      Thank all of you for sharing! My primary care doctor thought I had pneumonia and I had chest X-ray. But no pneumonia but ordered a Cat Scan which indicated pulmonary fibrosis. I have had pulmonary blowing tests of course. But when I found out I refinanced my house to put in a swim spa. Best thing I have ever done! Had lung biopsy thru my trachea and just ground glass and opacities. Have acid reflux. I have ankylosis spondylitis which the doctor thinks may be the cause of the fibrosis. I can’t walk a half a block without incredible pain but in the spa I do everything I can’t do out of water. My latest tests came back normal except for diffusion? So I am not on any meds yet except for tons for AS! I just try to not think about dying soon but I guess it’s better that I know.. I am 69 and feel like I am living in a 100 year old body! I should be a mermaid!

    • #33089
      Millie
      Participant

      I was diagnosed in December 2021 but still feel very normal. I do believe I had it for 10 years before symptoms appeared. I used to do a lot of bike riding in NJ—-20 miles at a clip. After moving to SC 10 years ago I got a bike and found that I was out of breath after riding a short distance. I thought it was just old age creeping up on me. As i look back, I now know that it was PF undiagnosed. I have to use oxygen 24/7 at a low level but I feel good every day with lots of energy, etc. Apparently, your PF was found at an early stage. It will slowly creep up on you. Enjoy every day now. I still do, oxygen and all.

    • #33086
      Denise Stogdill
      Participant

      God Bless you and I hope it continues for a very long time.  My advice to you would be to stay active and do everything you want to do in your life NOW!!!  As my fellow warriors have expressed, this is a very volatile disease.  You never know when it’s going to rear it’s ugly head.  So enjoy no symptoms.  My motto is be happy, be healthy and be grateful 😊😊😊👋👋👋

    • #33096
      Nina Merendino
      Participant

      Thank you all!

    • #33100
      Darcy
      Participant

      Hi Nina,

      This disease is hard to wrap your mind around when you are symptomatic. I was diagnosed in 2016 because I had cancer. Subsequent CT scans have shown still mild disease with no progression six 1/2 years later. Last fall it turned out I had a severely prolapsed mitral valve and had to have heart surgery. The only reason I tell you this is because my pulmonologist thinks the shortness of breath I am having 10 months after surgery is just because of all I have been through and he really doesn’t think it is a symptom of IPF. This is great news if he is right because it means I still have a chance to get stronger again. So, I can see why you are a bit baffled. When you have IPF and no symptoms you think maybe you will be the lucky one that never sees the progression of disease. I wish we could be so lucky. One thing I tell myself is to enjoy life now because I know some day down the road I will be dealing with the lungs. But, for now I beat cancer and I beat heart disease and the lungs are currently hanging in there. I hope you and I and so many others with mild disease will keep it that way for a very long time. One can hope anyway.

      Darcy

    • #33110
      Karen Martin
      Participant

      I was also diagnosed in early 2018.  Other than progression of SOB, things weren’t too bad.  Then I ended up in the hospital on September 3rd, staying for five days.  They seem to think it was mild/early phneumonia that I had.  I had been afraid it was COVID.  The doctor asked me if I have seen my films, which I have.  He suggested I talk to my family about my wishes should I end up in the hospital with another infection.  That will get your attention!  I know my condition is not the best.  I have lots of emphysema damage in the upper lobes of both lungs and fibrosis in the lower lobes of both of them.  I’ve pretty much just been coasting along on the theory that as long as what I have is still working, I’m not going to worry too much about the future.  That may not be the best way to look at it, but it is my way for now.  Yes, we will discuss thoughts about the future, but it can’t take over every day from here on.  I wish all of you the very best.

      • #33113
        Nina Merendino
        Participant

        I wish my father was alive today he lived 97 and was a fabulous and famous thoracic surgeon who did the first open-heart surgery on the West Coast. He traveled all over the world teaching people how to do heart surgery and at one point he and his team could’ve done it liver long and heart transplant all at once but he didn’t want to play God and so he was penalized for it. When my second pulmonologist told me that I need to eventually have a lung transplant he was shocked when I said I don’t wanna long transplant I’m not afraid of dying. He treated me like a special man he was the Director of the interstitial lung clean out with University of Washington . I feel like a specimen dad so I left his office and found another great pulmonologist at Swedish Hospital in Seattle. He did not agree with his mentor who was my prior pulmonologist that I had only five years left to live. He said he had an idea how long I would live that there was tons of research going on and other than the CT scan I have no symptoms no shortness of breath no cough and my blowing stuff is fine . So I wish I never knew about this diagnosis because I have an hour will and have decided to be buried at a certain place and I have two beautiful sons colossal father six years ago to another horrible I know and disease called anaplastic thyroid cancer which as a nurse I never have heard it either. What depresses me is that is my pain from the anchylosis spondylitis and my shoulder pain and my lungs don’t seem to bother me at all except for the fact that I think about him every day. I’m a psychotherapist and Hannah psychiatric nurse and I have been practicing for 42 years and I am the one that needs therapy I guess but I want to have a group work with somebody that has the same thing. It’s so nice to hear from people who have responded and I feel guilty for not even having the same trouble I guess. How crazy is that? I guess I’m the kind of person that just wants to go really fast and I don’t want to be on oxygen and tubes and all that stuff. We’re all gonna die some days is a matter of how and when. So anyway I hope everybody gets over this thing and they find a cure and a medication that works that’s all I can say thanks so much! I dictated this so there are many mistakes but it’s hard for me to move my fingers lol

        • #33115
          Millie
          Participant

          Hi Nina:
          Don’t be afraid of using oxygen when the time comes. I am on a low dose and have a concentrator in my house with 50 feet of tubing that enables me to get all over my house and front porch and back patio. I am very comfortable. I’m out every day and use the Inogen portable which is lightweight and rechargeable with batteries. Nothing much has changed in my life since being diagnosed. Some of my neighbors and friends who, when they heard I was on oxygen, thought I was on my deathbed. Not the case. Keep a positive attitude and stay active. If you can do that, I assure you that you’ll be here for a very long time.

    • #33111
      Linda
      Participant

      Hi Nina, I too, was diagnosed in 2018 and have had very little to no progression over the last four years. I found out I had IPF after a CT scan of my heart showed a secondary finding on my lung and then did a lung biopsy to confirm the diagnosis but other than that the only symptoms I had was shortness of breath, if I was taking the stairs which I really did and clubbing of my fingernails. Whatever you do, don’t listen to what you read on the Internet I spent a couple years waiting to die now I’m spending my time living and if that’s one year or 12 years I’m going to approach each one with gratitude.

    • #33112
      Nina Merendino
      Participant

      Me too! I have changed to third pulmonologist cuz the first two said I had max of 5 years and I felt like a s specimen! No lung transplants for me. I am 69 and really am not afraid of dying!

    • #33122
      Manzurul Khan
      Participant

      I was diagnosed 2 years ago (Oct 2020). Other than a dry cough in the morning, I have had no symptoms. I remain active phycially and take a brisk walk each day for about 45 minutes. I have been taking OFEV (100 mg twice a day) for the last 8 months. I was told I had 3-5 years to live. I am trying to enroll in a phase 3 trial with a doctor at Baylor College of Medicine. I am not afraid of dying but scared to be a burden on my family. I hope I die in my sleep but I will continue living like I do not have the invisible disease. I am 69 and work full time. When my time comes, I will go. I am going to travel overseas in December for a month to try to lighten my “bucket list.” Life is a gift and I want to enjoy it to the fullest. Thanks to everyone who shared their experiences. It gives me hope.

      Best.

      • #33132
        Gordon B Sandmire
        Participant

        Wish drs would stop that 3 to 5 years nonsense. All of us are different. With meds you might live much longer. Perhaps even a cure will be found. No sense being scared with that 3to5 cr**. Does more harm than good. I’m in my 8th year after diagnosis and still able to do most things but much slower. Hang in there.

        • #33133
          Millie
          Participant

          The 3 to 5 year time frame is just a ball park figure. My sister when diagnosed with heart failure was also told she had 3 to 5 years. There are so many variables. If you have other major health problems, not too good. If your health is otherwise excellent, better outlook.

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