Question for long term PEG users

DanceSkater
DanceSkater Member Posts: 62
in Head and Neck Cancer #1

Do you do anything special to prevent aspiration ?    

I'm always sitting or standing when I do a feeding and/or flush.  I'm also sure not to lay down for at least an hour after a feeding and/or flush.  Is there anything else I should or not be doing to avoid aspiration ?

I had a g-tube for about a year with no problems.  After having it removed for about 3 months, I had to get another. 

Comments

  • caregiver wife
    caregiver wife Member Posts: 234
    #2
    6 year PEG user

    Husband has been feeding tube dependant for about 6 years now.  We were never warned about aspiration, and have never had a problem.  He usually takes his feedings sitting down.  When sick, or in the hospital, they were usually done lying down.

    Looking on line, the persons with problems were those dependant on breathing assistance, with dementia, or terminally ill.  Husband's gag reflex is not affected at all.  Maybe that is why ????

    Hope this helps,

    Crystal

  • DanceSkater
    DanceSkater Member Posts: 62
    #3
    caregiver wife said:

    6 year PEG user

    Husband has been feeding tube dependant for about 6 years now.  We were never warned about aspiration, and have never had a problem.  He usually takes his feedings sitting down.  When sick, or in the hospital, they were usually done lying down.

    Looking on line, the persons with problems were those dependant on breathing assistance, with dementia, or terminally ill.  Husband's gag reflex is not affected at all.  Maybe that is why ????

    Hope this helps,

    Crystal

    Thank you

    Thanks Crystal.  I appreciate your time and information.  The main reason I asked the question was I became very concerned after I read what Hondo's daughter wrote about his death.  She explained that he had a hard time bouncing back from "pnemonia from aspirations".   I know he was a long time tube user. 

  • Sundance99
    Sundance99 Member Posts: 1
    #4
    caregiver wife said:

    6 year PEG user

    Husband has been feeding tube dependant for about 6 years now.  We were never warned about aspiration, and have never had a problem.  He usually takes his feedings sitting down.  When sick, or in the hospital, they were usually done lying down.

    Looking on line, the persons with problems were those dependant on breathing assistance, with dementia, or terminally ill.  Husband's gag reflex is not affected at all.  Maybe that is why ????

    Hope this helps,

    Crystal

    My new life is a hard road

    hello....my cancer was further along so I had to have a tracheostomy, and a feed tube. Spent a month in hospital with that, came home, started chemo and radiation, back to hospital with infection another month. 35 radiation treatments.. they say because to tumour was so large they had to give me a wide field of radiation. Tumour was in my sinus and down my throat. Was sick as a dog for about 5 months...trach is out now and I feel better but have not been able to swallow anything. My speech therapist says my esophagus is closed...I am doing all the swallowing exercises to try to get swallowing again..I am very discouraged and unhappy that i can not eat or drink anything...going out for meals was a big part of my social life...not sure if I will have to live with this feed tube for the rest of my life...i try not to get to down but I am having a hard time with this huge change in my life.

  • Klingels
    Klingels Member Posts: 78
    #5
    feeding tube

    My husband has no troubles with aspirations either. He was never warned it could be a problem. He generally eats sitting up. He cannot swallow anything.

  • caregiver wife
    caregiver wife Member Posts: 234
    #6
    Sundance99 said:

    My new life is a hard road

    hello....my cancer was further along so I had to have a tracheostomy, and a feed tube. Spent a month in hospital with that, came home, started chemo and radiation, back to hospital with infection another month. 35 radiation treatments.. they say because to tumour was so large they had to give me a wide field of radiation. Tumour was in my sinus and down my throat. Was sick as a dog for about 5 months...trach is out now and I feel better but have not been able to swallow anything. My speech therapist says my esophagus is closed...I am doing all the swallowing exercises to try to get swallowing again..I am very discouraged and unhappy that i can not eat or drink anything...going out for meals was a big part of my social life...not sure if I will have to live with this feed tube for the rest of my life...i try not to get to down but I am having a hard time with this huge change in my life.

    New Life

    Sundance, you would get better response from members if you restarted this in a NEW thread.  Your response to this thread may not be read by many members with no long term use of feeding tubes.

    You have had quite the difficult time!  So very sorry.  I have found this group to be the very best, and I hope you will as well.

    Are you currently seeing an ENT specialist for your current throat condition??  My husband was like you in that the entire length of his throat was radiated.  He has been on feeding tube for years now and there is no expectation that will change.  He had  quite a bit of damage to jaw and paralisis of one side of his face contributing to his dependance on the feeding tube.

    Many of us come out of treatment into a totally new existance.  It can be difficult to come to terms with our new reality.  But we are survivors, and with time, this too will pass.  But you are still in the healing process so try to focus on recovery.  This part can take longer than we ever expected, but your body will continue to heal for quite some time.

    Just as there was a plan for your treatment of cancer, you need a plan for your best outcome.  You are already seeing a speech therapist, which is great.  I don't know who you need to talk to at this point because it can vary by location.  But you need to understand what your doctor(s) are planning for your long term recovery.  You may be switching from oncology to the ENT doctor as your main focus as to treatment.  At this point in time, it may be that a plan for you is dependant on your individual continuing recovery.  Specifics may have to wait.

    You will find great support here.  So glad you found us.  Hugs and blessing to you,

    Crystal

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #7
    Sundance99 said:

    My new life is a hard road

    hello....my cancer was further along so I had to have a tracheostomy, and a feed tube. Spent a month in hospital with that, came home, started chemo and radiation, back to hospital with infection another month. 35 radiation treatments.. they say because to tumour was so large they had to give me a wide field of radiation. Tumour was in my sinus and down my throat. Was sick as a dog for about 5 months...trach is out now and I feel better but have not been able to swallow anything. My speech therapist says my esophagus is closed...I am doing all the swallowing exercises to try to get swallowing again..I am very discouraged and unhappy that i can not eat or drink anything...going out for meals was a big part of my social life...not sure if I will have to live with this feed tube for the rest of my life...i try not to get to down but I am having a hard time with this huge change in my life.

    New Life

    After my husband had his first round of radiation, he couldn't swallow or speak and it was only when he was having surgery to remove his larynx did they find that the back of his throat had been damaged by the radiation and they had to reconstruct his throat.  He too did the swallowing exercises with a speech therapist but it didn't help him.  After surgery about 8 weeks later he was able to eat and swallow liquids.  He also had to have his esophagus stretched several times.  All this lasted about a year when they found a second primary at the cervical of his esophagus.  More radiation and a feeding tube and after that he was never able to eat or swallow and lived on a feeding tube the rest of his life.

    Wishing you peace and comfort.

     

  • DanceSkater
    DanceSkater Member Posts: 62
    #8
    Sundance99 said:

    My new life is a hard road

    hello....my cancer was further along so I had to have a tracheostomy, and a feed tube. Spent a month in hospital with that, came home, started chemo and radiation, back to hospital with infection another month. 35 radiation treatments.. they say because to tumour was so large they had to give me a wide field of radiation. Tumour was in my sinus and down my throat. Was sick as a dog for about 5 months...trach is out now and I feel better but have not been able to swallow anything. My speech therapist says my esophagus is closed...I am doing all the swallowing exercises to try to get swallowing again..I am very discouraged and unhappy that i can not eat or drink anything...going out for meals was a big part of my social life...not sure if I will have to live with this feed tube for the rest of my life...i try not to get to down but I am having a hard time with this huge change in my life.

    Dear Sundance

    I was trying to word all of the things I wanted to convey to you.  However, Caregiver Crystal wrote everything I wanted to express and then some.  And did a much better job than I could have done !!

    Again, please think about starting a new thread so you'll get a number of replies.   Jan

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