Frustrated

I went to one pulmonologist and test showed bilateral dependent acetosis, moderate restrictive lung disease and he said the diagnosis was post inflammatory pulmonary fibrosis. I went to another pulmonologist for a second opinion and they said all the problems were because I am overweight and out of shape. I don't know who to believe. Right now I have 60% lung capacity. My oxygen stays around 92 most of the time. I used to be really active but I just don't have the strength or air to be that way as much anymore. I am trying to get out and walk everyday besides the walking I do at work. Anyone have any suggestions.

7 Replies

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  • Hi Photolady, good news as there is hope that the second pulmo is correct. If I was you I would put a program in place to slowly get fitter and loose some weight. So I would try and do a little bit of exercise each day, and do a bit more every day or walk a bit faster every day. Over time you will find you will get a lot fitter and feel better. Same with eating, try to eat a little less each day, maybe one less cup of tea with sugar etc. You know it is not important what the diagnosis is or what the numbers are, what counts is how you feel. Please try fitness and loosing weight and you may find the second pulmo is correct and you will feel a whole lot better over a few months. And even if the first one is right these measures will help and you will feel better. Good luck xxx

  • Thank you!

  • Eat 150 kcals a day less and you will save 12 to 16 lbs over a year - it is do-able.

  • Thanks!

  • No wonder you are frustrated - that is difficult to understand. Perhaps a call to the helpline to ask their advise - You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. TAD xxx

  • I have RLD confirmed with PH and that with the heart problems etc. cause me all sorts of problems and I am exercise intolerant I have reduced my food input significantly but I am losing so slowly. I was put in for PR but that was refused due to the exercise intolerance I am still waiting for a bike test date to see which bit is failing the most?

    Being out of breath is not so bad but when you are struggling to breath then it is time to regroup and get the breathing back in order. Keep up the walking but find your limits.

    Be well

  • Thanks!

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