Viewing 3 reply threads
  • Author
    Posts
    • #17106
      Louise
      Participant

      Hi, My husband was diagnosed with IPF in October. He will be 75 in March. He has been on Esbriet since January 1st. He has been hospitalized 5 times since September. He is in the hospital again now. This time his pulmonologist suggest TTOT. Has anyone heard of it and/or know of someone who has had the procedure? We have been told that it will improve his quality of life and reduce his oxygen needs from 5-8 liters to 1-3 liters. Any information would be greatly appreciated. Thank you so much.

    • #17118

      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!
      Charlene.

    • #17129
      Louise
      Participant

      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.

      https://www.verywellhealth.com/what-is-transtracheal-oxygen-therapy-914866

    • #17148

      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,
      Charlene.

Viewing 3 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account