• Swollen Belly IPF

    Posted by Deleted User on May 25, 2023 at 2:20 pm

    My husband has been diagnosed in 2018. He was doing well until lately…. He is 24hrs on oxy. Lately does his belly swell a lot. And is hard as stone. Could it be beginning of end stages?

    Debbie k replied 3 months ago 5 Members · 6 Replies
  • 6 Replies
  • ruth-edwards

    May 28, 2023 at 5:11 pm

    I’m not sure but his situation is the same as mine.
    I’m starting my 8th year of PF, on oxygen 24/7 and in the last year my belly is bloated most of the time and sometimes hard.  I’ve found some of it is my diet, as I want to enjoy meals with my husband to add to our memories.  I think the medication itself has it’s own toxins that you need to drink a lot of water to help flush out.  Plus, make sure that you have regular BM’s, which isn’t always easy, with all the meds we need to take.  I have a phone appointment with my Palliative doctor on Monday & I’ll ask her if this is also an indication that this is the end stages.  I know for myself, I have definitely lost a lot of ground in the last month alone. I was walking a mile a day on the treadmill but it was starting to cause so many aches in my bones.  I’m also more and more sleepy…so?


    • Deleted User

      Deleted User
      August 10, 2023 at 11:45 am

      Hi Ruth, sorry I am only coming back on this forum now…Hubby has passed away in July and now I am trying to collect my thoughts…but my brain is drowning in tears….

  • joy

    August 23, 2023 at 8:49 am

    Hello, I’m new to this forum and was doing some research for my symptoms. I was diagnosed with pulmonary fibrosis in 2020. Have been on oxygen 24 hrs a day, and the bipap at night. The last four months every time I go to the doctor, which is almost every six weeks I have gained more and more weight. I have much swelling in my legs however, my stomach looks nine months pregnant. I am at the end of my disease. and I am now on hospice. They are saying six months or less. My issue is what is causing this extreme swelling in my abdomen. It is so uncomfortable the hospice nurses don’t seem to really understand why it happens and I’m wondering if you were able to get any more information as to how it happened with your husband. Also I’m so truly sorry for your loss.

    • Deleted User

      Deleted User
      August 25, 2023 at 4:40 am

      Hi Joy, so so sorry to hear that u are also sick with PF.  With my hubby I asked the dr and he said it is fluid in the belly because the heart battled to do what the heart needs to do.

  • george-poulsen

    August 28, 2023 at 8:47 am

    83′, diagnosed two and half years ago but xrays, scans show scarring up to 10 years ago. 24/7 oxy, (4-5 lpm day and 4 lpm at nite Inogen), tired for  1 hour nap each afternoon, cannot handle heat or cold outside 80 degree range, or coughing or shortness of air sets in., not real active with our heat in Texas at this point and etc, and will miserably fail any attempt to walk even 4 minutes without a  5 minute stand and reuperate by breathing in through nose and verry slow out though mouth (This what I call “let me stabilize”-while oxy used up gets back through system, then can walk again). I have refused meds to date because at this age if it can’t cure me then I need to concentrate on other things. Responsibilities etc.

    My belly——-same complaints for at least 6 months, very hard to the touch, no give plus losing weight?……….however, my innovative wife recently mentioned that we do eat in front of TV every nite and I always get very uncomfortable over the next two hours. But she has also noticed that I will tend to get up to go to bed and almost every time exhibit a really large burp (belly gas trapped I presume) and suddenly feel better. At that point belly loses all the hardness and resumes a soft to the touch feel and no longer uncomfortable. I am on 400 mg of Paneprazole (just increased from 200) which helps too. I saw Gastroenterologist who wasn’t too concerned and was the one who increased my omeprazole 200 to the 400 Paneprazole, Otherwise I don’t experience much discomfort from this during the day, but eat breakfast almost noon and dinner around 7.

    I have observed a study on-line where the Japanese researchers found a coorelation between having IPF and Hiatal Hernia and Gerd, and (can Google that) an end result where stomach acids can cause scarring in the lungs and they know they relate but cannot determine yet as to which one causes the other, if it does at all. Again the Gastroenterologist was aware but not real concerned.


  • Debbie k

    August 31, 2023 at 8:17 pm


    Just wanted to share what I was told about the bloating. I too look about 9 months pregnant. But my abdomen isn’t hard. My primary doctor told me it could be extra o2 that I’m not expelling. I’m on O2. 24/7. At 7-8 liters. I’m always bloated and consipated. I’m on pain meds for other reasons which presents another bunch of problems. Blessings to all. 🙏🏻🙏🏻🙏🏻

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