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  • Oh how I hope they come out with a drug that does not make one sick. I’ve only just started on OFEV. Hoping it gets better. I have good days (not normal like old days) and some “(this is a help?)” days. I am still in a “questioning” phase. Why me? Which is exactly what my mother said when she was diagnosed with lung cancer as she was a…[Read more]

  • HiJay, I am anxious to hear if you got your questions answered. In your case, I think NO news is good news. I went in because of chest pain and within 48 hours after an ex-ray and CT scan, they told me my diagnosis, which was IPF. You are so young. Upon reading about lung diseases and also watching Utube, I found there are over 200 types of…[Read more]

  • Thanks for your input.  It helps.  Just not not feeling alone and that others are lasting a few years is good news. My first doctor was so cold and so matter of fact.  Three to 5 years to live.  No Hope.  A change of doctors has helped me and he got me on meds immediately.  At my age I can’t hope  for too much, but having been given an end date,…[Read more]

  • Thank you for your reply.  Am I the only one hoping the doctors are wrong or they say I have been cured?  I just can’t believe this has happened.  Magical thinking?  The more I know, the better. Jackie

  • Would like to know if the side effects from taking OFEV subside or lessen in the long term.  I am on 150mg twice a day .  I seem to have the diarrhea somewhat under control. Indigestion pain  and burning pain in stomach are debilitating.  I am struggling with eating too much or not enough with the food to keep side effects at bay.  Can not seem…[Read more]

  • I know everyone is different BUT a question.  I was diagnosed with IPF in April this year.  Beginning stages and I have no cough as yet.  Is there a timeline when this begins?  Doctor put me on OFEV and I am now taking 150mg x2.  So many side effects, I don’t know if I can do this.  Trying to eat right, not too much or GERD kicks in.  Does it get…[Read more]

  • Hi Kate.  I was diagnosed in April of this year. No cough or oxygen yet.  I am VERY tired and do not know if it is IPF OR the meds OFEV?  My oxygen rarely drops below 90’s.  I can walk for 15 minutes no problem but I feel like a sloth.  NO uphill.  With the Covid, CA fires and smoke and heat at 102 I am house quarantined.  Wondering if you were o…[Read more]

  • Jackie Kalina posted a new activity comment 3 months ago

    Thanks for your reply. Magically one day I felt better and not so doggedly tired. Will certainly bring it up when I go to doctor Sept. 2nd. With a California heat wave and fires, I do not go outside at all. This too shall pass. I would like to confer with other people about their symptoms from disease AND Ofev. I’m not sure if my message…[Read more]

    • Hi Jackie, it’s good to hear you are feeling better. You can post to the entire membership if you wish and when doing that you can tag others. Everyone will see your post and most likely they will have shared or share the same experience as you. Please be careful out there, Mark.

  • Jackie Kalina posted a new activity comment 3 months, 2 weeks ago

    Thanks Mark for your reply. Lucky for you, you received a lung transplant. I am too old to be considered and am still in the early stages. Eating is a conundrum for me. When I eat if I am hungry, it’s so good I eat too much and suffer later. I am now eating a snack before I get hungry, so I don’t overeat. Another question. Are the effects of…[Read more]

    • Hello Jackie, I am sorry to hear you are feeling the blues. Hopefully this COVID situation will rectify itself and we all can go back to the norm. The fatigue may be from the disease. Some patients have also experienced unusual tiredness from the Ofev. Please talk to your doctor about how you are feeling. I found when I ate too much I found I was…[Read more]

      • Thanks for your reply. Magically one day I felt better and not so doggedly tired. Will certainly bring it up when I go to doctor Sept. 2nd. With a California heat wave and fires, I do not go outside at all. This too shall pass. I would like to confer with other people about their symptoms from disease AND Ofev. I’m not sure if my message…[Read more]

        • Hi Jackie, it’s good to hear you are feeling better. You can post to the entire membership if you wish and when doing that you can tag others. Everyone will see your post and most likely they will have shared or share the same experience as you. Please be careful out there, Mark.

  • I am confused with the possible diagnosis. My lung dr said he was 80% sure I had IPF. They did a biopsy through my mouth. Extracted fluids and tissue as an in-and-out patient. NO big deal for me. However the dr went on vacation for two weeks and I still don’t have the results. He started me on Ofev and have been on it a week. Concerned…[Read more]

    • Hello Jackie, the procedure you experienced is the bronchoscopy. Unfortunately some bronchs come back inconclusive as mine did. I experienced discomfort if I ate too much. I tried to eat 5-6 small meals a day which seemed to alleviate the discomfort. Even now after transplant if I eat too much there is discomfort which I do not like. My diaphragm…[Read more]

      • Thanks Mark for your reply. Lucky for you, you received a lung transplant. I am too old to be considered and am still in the early stages. Eating is a conundrum for me. When I eat if I am hungry, it’s so good I eat too much and suffer later. I am now eating a snack before I get hungry, so I don’t overeat. Another question. Are the effects of…[Read more]

        • Hello Jackie, I am sorry to hear you are feeling the blues. Hopefully this COVID situation will rectify itself and we all can go back to the norm. The fatigue may be from the disease. Some patients have also experienced unusual tiredness from the Ofev. Please talk to your doctor about how you are feeling. I found when I ate too much I found I was…[Read more]

          • Thanks for your reply. Magically one day I felt better and not so doggedly tired. Will certainly bring it up when I go to doctor Sept. 2nd. With a California heat wave and fires, I do not go outside at all. This too shall pass. I would like to confer with other people about their symptoms from disease AND Ofev. I’m not sure if my message…[Read more]

            • Hi Jackie, it’s good to hear you are feeling better. You can post to the entire membership if you wish and when doing that you can tag others. Everyone will see your post and most likely they will have shared or share the same experience as you. Please be careful out there, Mark.

  • Petting my outside cat set off an asthma attack.  Went to doctor and got an inhaler.  Did not get better. Dr ordered an exray and something was seen.  Next got a cat scan and was told I had IPF, go to pulmonary dr.

    I did.  He confirmed the diagnosis and said come back in two weeks.  Scheduled lots of blood tests, pulmonary

    tests.  I asked where…[Read more]

  • Jackie Kalina posted a new activity comment 7 months ago

    Thank you. I have so many questions. The prognosis is 3 – 5 years, but I see a lot of people here have had it longer. I am just starting this journey.

  • Jackie Kalina became a registered member 7 months ago

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