• Jackie Kalina posted an update 10 months, 1 week ago

    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 because some people say you take different medicines for interstitial diseases. I have had not problem with Ofev so far. On 100 mg twice a day. I have chest pain. Very sporadic cough. Oxygen levels are usually always in the 90’s and may dip a bit when I am walking. He said it is mild at this point. I dread the future.
    QUESTION: When i eat, I feel more chest pain and feels very full. What is the cause of this? There isn’t “much left” with Covid AND IPF. I enjoy eating and now I can’t even enjoy that. Why is that? Regards, Jackie

    • 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 sits up higher and what happens is when my stomach gets over full it presses on the diaphragm which in turn presses on my right lung causing me discomfort. I do know my chest pain was caused by the coughing I was doing. Maybe ask your physician when you are able to talk to him, hopefully he can give you the answer. Take care, Mark

      • 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 OFEV cumulative because I don’t have too many effects after one week. My biggest problem is I am so tired and weak sometimes. Really, a lack of stamina. Is this also a side effect of meds? My oxygen levels are still in the 90’s mostly. I feel like I have the flu a lot of times. Silly thought!!! I don’t want to live like this. Two years I took trip to Machu Picchu and last year England and France. With Covid and IPF I feel my life is over. Trying to enjoy and live “one day at a time” but” it’s a slog. Forgive my rant. Jackie

        • 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 uncomfortable and still feel this way if I overeat. Try to eat smaller healthy meals when possible and maybe save something you really love for the next morning. Take for instance, this morning I had a turkey taco bowl. I didn’t want to pig out last night and sit in watch tv while being uncomfortable. It is ok to rant and lets keep up a positive outlook. Your oxygen level is good with it staying in the 90’s. Take care and keep me up to date with how you are doing. Mark

          • 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 is getting out there. Do I contact people specifically or just write on this blog? Thank you, Jackie

            • 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.

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