• Introduction

    Posted by HighHopes on October 18, 2023 at 2:52 pm

    Wish I could say I’m happy to be here, but I would be lying. Up until one month ago, my only experience with pulmonary fibrosis was from learning the cause of death of one of my wife’s best friends. She was a very heavy smoker, so I just passed it off as another horrible, self-inflicted waste of a life. Now it’s me….

    I’m a 75 year old asymptomatic male in good health. I’ve never been a cigarette smoker but I have indulged in very light cannabis use for over 50 years. Not anymore. Several years ago I was diagnosed with sleep apnea and have been using cpap ever since. My sleep doctor is also a pulmonologist. After complaining to her about my excessive throat clearing, phlegm, etc., she suggested I try some medications for acid reflux, asthma, etc. None of these had any affect. She then suggested that I do a series of pulmonary function tests. I passed them all with flying colors. She had mentioned things like a CT scan and some type of nasal test performed by an ENT, but I wasn’t interested. After about a year of this back and forth, I agreed to do a CT scan. I had a regular scan followed one week later with a high resolution scan. Both showed prominent, peripheral markings consistent with IPF. There was no honeycombing or ground glass opacities. My doctor then ordered a panel of blood tests to eliminate several known causes of pulmonary fibrosis and I was negative for all.

    I was referred to another pulmonoligist who specializes in interstitial lung disease, and I’ve had one appointment with him so far. During my visit, he had me do a 6 minute walk test and, according to the nurse who administered the test, she has only seen one person (much younger) score higher. I will be returning for another visit soon for follow-up pulmonary testing and a discussion of the two IPF medications. After viewing my scans, this doctor reported that I have mild presentation of “probable UIP.” He does not recommend any type histological testing for IPF, so I assume he’s convinced that’s what I have. Also, he thinks that all of the initial complaints I had concerning throat clearing, phlegm, etc. were due to allergies and post nasal drip. So my UIP diagnosis was a total accident. Possibly devine, and yet to be determined…..

    I can accept that I have lung scarring. I’ve had pneumonia several times in my life following the flu, and I had a case of covid that left me weak and breathless for many weeks. What is really hard to accept, however, is that there apparently is not a way that a highly experienced thoracic radiologist can differentiate old, burnt out scarring from active, progressive fibrosis. It appears that IPF, by definition, is not relic.

    I wish all of you the best as you deal with this horrible disease. At this point I have no idea what you’re going through, but I hope to help as much as possible.

    Samuel Kirton replied 8 months ago 4 Members · 4 Replies
  • 4 Replies
  • Nate

    Member
    October 20, 2023 at 11:04 pm

    Sorry to hear of your situation. I don’t blame you for wondering if there can be old scarring vs an ongoing condition. Nothing I have seen online even mentions that. It sounds like you have good doctors though and aren’t just being brushed off like I feel so many doctors do.

    Might want to see if your CPAP is on the recall list. Apparently certain brands have been causing lung problems for some people. A friend’s CPAP was recalled due to possible issues where it can release chemicals that they would breathe up and not even know it.

  • Charlene Marshall

    Member
    October 24, 2023 at 9:24 pm

    Wow, thank you all for sharing this!
    My portable concentrator (POC) is a Respironics so I was worried. Glad to see it’s CPAP machines and not POCs, as my machine has enabled me to travel for many years without issue as its also FAA compliant. Important information for folks who use the Respironics CPAP machine.
    Char.

  • Samuel Kirton

    Member
    November 19, 2023 at 6:27 pm

    I used a Respironics CPAP until I was transplanted in July 2021. Following my bilateral lung transplant I was advised to no longer use my CPAP. My device was subject to the recall and I received a new machine from Phillips.

    The issue was the breakdown of the foam used to reduce sound and vibration from the units. One factor that is often overlooked is the surge in the number of users who utilize ozone and ultraviolet cleaners. This is recognized in the linked FDA report. It was discovered the use of these cleaners may have accelerated the breakdown of the foam material.

    The FDA in October 2023 stated: “Ozone gas and UV light machines that claim to clean CPAPs do not have FDA clearance or approval, meaning that the FDA has not found that ozone gas and UV light cleaners work to kill germs on CPAPs and are safe. The FDA has not received data or evidence from manufacturers that says UV light can clean the inside surface of CPAP hoses, or information to confirm that UV light does not damage CPAP machines. The FDA does not have evidence that machines using UV light protect you from unsafe levels of UV radiation exposure.”

    Sam …

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