• Charlene Marshall

    February 26, 2019 at 8:05 pm

    Hi @louiseh,

    Thanks so much for bringing up this topic, and starting this discussion thread. I’ve not heard of TTOT before, but I am also curious to hear of others living with IPF have been spoken to about this option for reducing oxygen. I’ll keep a close eye on this topic thread, and if no one replies I’ll post it more broadly, potentially utilizing our social media as well to see if we can find some personal experiences / more information for you. Is it similar to being placed on a trach, Louise?

    If anyone else has information or insight to share regarding this, please do let us know.

    Best wishes to your husband Louise for a speedy recovery!

  • louise

    February 27, 2019 at 11:23 am

    Yes, Charlene, it is like a trach but permanent. It is reversible if need be.

    Below is link for you to look at. Thanks for the reply and assistance. We are still waiting for a date.

    Good luck to you on your journey. I must tell you that watching my husband  suffer with this horrible disease, I have become aware of and thankful for every breath I take. Breathing is something we don’t think about. We just do it. Until we can’t so easily. I pray for him and everyone who suffers with this disease.


  • Charlene Marshall

    February 27, 2019 at 11:25 am

    Hi Louise,

    Thanks so much for circling back and sharing this information with me. I had not heard of TTOT but suspected it was similar to a trach based on the name. Did you and your husband decide to pursue this? Please let me know how it goes, and if you find it beneficial for your husband. So sorry to hear of his diagnosis of IPF, it is such a cruel disease, isn’t it? The tagline of the PFF is so true: breathing should never be hard work. It is amazing how easily we can take it for granted, isn’t it?

    Wishing you and your husband the best, and please feel free to write anytime. We’re all here for you both!

    Warm regards,

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