Pulmonary Fibrosis News Forums Forums Welcome Lounge Hard time Breathing in the mornings.

  • daisyd

    Member
    February 26, 2024 at 7:22 pm

    I also, have a very hard time breathing in the mornings. I have asked for Oxygen when I go short distances of exertion. They say it is still the Six minute Walk. That most days I can do. My heart rate goes high Oxygen rate stays somehow OK most of the time.

    I went to a Cardiologist for a Full Work Up that had helped with breathing and change of inhaler.

  • tammylewis21912yahoo-com

    Member
    February 27, 2024 at 2:28 pm

    Hi.I’m fine till start to get out of bed.Everymorning,my level goes, between 88 and 70,along with mucus.Was diagnosed 3 years ago.I have to sit down for a few minutes.I failed my last 6min.walk.I hope everyone gets the help you deserve.Praying for you 💖💖💖 No I’m not on oxygen, I’m self pay,and can not afford it.

  • daisyd

    Member
    February 27, 2024 at 3:30 pm

    I was diagnosed about 6 years ago by my Asthma Dr she kept treating me for Bronchial infections finally sent me for a CT. Then came the bad news by phone Bo had no idea what it was not explained just sent to pulmonary Dr. not friendly and still no real explanation of how, what I could have gotten this.

    I dreaded his visits. I put up way too long he did the minimal. Finally I told the Asthma Dr. I wanted a change after I had COVID and Pneumonia she sends me to this local Nigerian Dr. with current CT results. He says you have 7 years to live. So shocked! Where is that coming from?

    Back to Asthma Dr. never seeing him again what a downer. I want to go to the big teaching hospital. They tell me not much change and they had years of my CT’s. How could a Pulmonary Dr. talk to someone like that pull a number out of the air and make them lose all hope?

  • carl-stidsen

    Member
    February 28, 2024 at 3:25 pm

    I was diagnosed in 2018. and was given the standard five year sentence. I’ve noticed a progressive slide as my lungs get scarred. Now , my lungs sound like cellophane being crumpled . The only thing I’m doing now is sleeping with my Concentrator on at a low setting , and using the concentrator whenever I do anything strenuous , including walking , climbing stairs and driving. . No drugs , no nebulizer. I used to wake up coughing every morning , but now I get a couple hours sleep before my Bladder wakes me up. ( if not one thing it’s another . I’m just glad to wake up !). Then back to my recliner ( can’t sleep horizontal any more) until the next Bladder wake up . ( I’m 80 ). Look into getting ( buying ) a concentrator. Yeah , Medicare will get you one and pick up the tab (maybe) , but your equipment provider will rip off the Govt for the rental ( about 10% of the cost new every month). Insofar as your PF Death Sentence….- Yup . We all have one . Accept it . God will call you on his schedule , not yours . Enjoy the time you have left with your loved ones , hobbies , travel, etc. , however long or short that is. But try a concentrator on a setting recommended by your MD – I’m still on a 2 (of 6) flow setting setting. It lets me sleep . The Docs recommend a full flow CPAP, hoses , tanks , etc. Good for them, but not yet. . So far I don’t need all that . Someday maybe . Meanwhile , don’t forget to live and enjoy your life.

    • Noname

      Member
      March 20, 2024 at 8:02 am

      Could you tell me more about the Concentrator. I have not heard of that or what it does for you.

  • maria-donihoo

    Member
    March 5, 2024 at 5:42 pm

    Hello everyone!

    I was diagnosed with IPF in 2021 and I tried taking OFEV but it did no agree with me so, I am not taking anything right now! I feel like I’m getting worse because I have a hard time breathing with just a little bit of walking or working around the house! I started doing research about getting healthy and found the book “Stay Off My Operating Table” by Dr. Phillip Ovadia heart surgeon. I now follow Dr. Ken Berry, Dr. Anthony Chaffee, Dr. Shawn Baker and many more doctors on YouTube. All these doctors are Carnivores. I have lost 30 pounds sin August, reversed my pre diabetes, and my arthritis is slowly going away! I’m hoping it will stop the progression of my IPF so I won’t have to take any medication. I watched a video with Dr Berry and Dr David Brownstein about iodine. Dr Brownstein talked about giving his lung patients a nebulizer with iodine and peroxide during the Covid pandemic. I need to look into that further and do some research on it! Here is the link if anyone is interested! I feel I don’t have anything to lose!

    Respectfully,

    Maria Donihoo

    https://www.youtube.com/live/Oix26uuBfZg?si=EeZCYM7ix0NBpOoY

  • Larry70

    Member
    March 19, 2024 at 7:22 pm

    Maria, For some people a Keto-type or carnivore diet might help their weight loss and inflammation but I’ve never read anything about it helping something like IPF – a totally different disease process. You may already know this but it’s dangerous to take advice about treating your disease from someone who isn’t your pulmonologist. Currently the only treatment is the two anti-fibrotics and/or a lung transplant. The other option is, sadly, to let the disease progress on its own terms.

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