• If you have PF, have you had a sleep study?

    Posted by Charlene on March 19, 2026 at 9:30 am

    As patients living with a chronic illness like IPF, we’re used to navigating multiple medical appointments. Oftentimes, when I share with friends the number of appointments a typical clinic day is made up of, they’ll often say to me, “That must be exhausting”. I always answer with a short confirmation that it is, which is why I try to avoid extra appointments whenever possible!

    I really adore my Family Doctor; he is very supportive, validating, and thorough. When I mentioned my recent levels of fatigue, after I visited him following an ICU admission in December, he ordered a sleep study to check the quality of my sleep. Honestly, it makes sense that the quality of my sleep is compromised by a lung disease, so I don’t feel great about going for another appointment, even though I’m grateful he’s taking my concern about fatigue seriously.

    Has anyone had a sleep study that was particularly beneficial or informative for the management of your IPF? If so, please share with the forums community what was found that was helpful!

     

    Whezzer replied 1 week, 3 days ago 4 Members · 3 Replies
  • 3 Replies
  • Samuel Kirton

    Member
    March 20, 2026 at 9:23 pm

    Charlene,

    I had multiple sleep studies prior to transplant. Two of the studies were conducted overnight in the hospital setting. A third study was conducted as a home sleep study. The studies showed that my breathing slowed or stopped multiple times during the night. My saturation levels would drop with my breathing. A CPAP device was prescribed, and it made a big difference. Subsequent sleep studies led to adjustments in the CPAP pressure settings. When supplemental oxygen was prescribed later in my journey, the oxygen supply was ported into the CPAP hose.

    Subsequent to transplant, my care team had me stop using my CPAP. I have not had to go back to it, and my sleep has not been impacted. The initial concern about the CPAP use post-transplant was the pressure applied to the airway. Sam…

  • Maria

    Member
    March 29, 2026 at 8:17 am

    Hi Charlene, I had a sleep study about 9 months ago and it was positive for sleep apnea. My score was 33 which means that I had this many episodes in 1 hour. My blood oxygen was in the 80s. Since being on CPAP therapy my episodes dropped to .5 per hour which is a significant drop. Although some nights it could be a bit higher. My blood oxygen is usually 95 +. There was an online seminar about 1 year ago with a pulmonologist that discussed sleep apnea and PF and she stated that all PF folks should be tested for apnea.

    I hope this information is helpful. All the best to you.

  • Whezzer

    Member
    April 2, 2026 at 2:34 pm

    I was diagnosed with sleep apnea and was put on the paper, i had inital covid then PF…I believe the two caused PF as I ran and biked months before..SPO2 is usually 92 now.

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