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After a 33 days of IC we are going back to our home. She is so strong in fighting with this desease.

Unfortunately we have a tracheostomy now and a quite a lot weight loss πŸ˜” a more difficult and more care needed days start ...

Does anyone experienced tracheostomy stage ? Do you have any advice ? I am quite frightened 😱

Thanks in advance

Burcu/ Istanbul - Turkey

5 Replies

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  • Oh Burcu, your poor mum has had a dreadful time and it must be awful for you and others who love her.

    I'm sorry I can't give any advice as I have no experience of people with a tracheostomy and don't remember ever reading about it on this site but hope someone can advise and reassure.

    Stay strong.

    X

  • Thanks Nanna... I'll try to be ... It is so bad to see her at this stage

  • No we have not experienced this procedure. Like NannaB I have not heard of this procedure used for anyone on this site. Does your mom have PSP? does she have other complications such as severe infection or a burn? or is it a paralysis that caused her not to breath with her wind pipe? Is she on a ventilator? I ask these things for future reference. My husband just received a PEG tube due to lack of epiglottis not closing the glottis fully.

    I do hope that you, your family and most certainly your mum will embrace this new part of her life and use it to the fullest. It is not easy to transition from regular life that we took for granted to a constant caring of that life's most "mundane" activities .

    Good luck God Speed,

    AVB

  • Sending lots of love and big hug!

    Lots of love

    Heady

  • I had an individual send me an email once (I lead support groups in Louisville, Kentucky, USA), so she probably found my email address on the CurePSP website). She told me of her mom/mum's experience with a tracheotomy and it definitely was not a good experience. They require a lot of attention and it caused significant pain to the individual. I wish I knew more to tell you and could tell you something more positive. May God bless you and your family.

    Ketchupman

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