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    When is it time for hospice?

    My husband has been in hospice since April 9. Since that time, we have never met either of our hospice physicians. The nurse maintains phone or text contact with them. They authorize prescriptions (i.e., dieuritic meds, UTI and blood pressure meds). Nurse comes once a week to check vitals...
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    Hospice / feeding tube

    Stumble: In order to receive hospice care, a physician must certify that the patient is unlikely to live more than 6 months. After the first 3 months, the patient must be recertified by the hospice doctor/staff. Thereafter, short-period recertifications may take place. The goal of hospice...
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    Doctor visit on Friday

    Barbie: It's really important that you cement an ongoing relationship with a doctor. ALS Clinics will not help with commonplace issues. We know this for a fact. My husband is now bed bound. He cannot turn or feed himself. I have a home health care aide (paid for by us) in the mornings...
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    Once a patient is on hospice, what services does medicare take away?

    Barbie: Phil recently had severe abdominal pains and we went to the emergency room. We discovered what we did not expect: Phil, who had been in remission with non-hodgkins lymphoma for almost a decade, had developed a new lymphoma--an aggressive, transformative type (in his back near his...
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    Once a patient is on hospice, what services does medicare take away?

    My husband entered hospice care about two weeks ago. At the time he was using the Trilogy 100 and cough assist (paid for by Medicare). His equipment costs are covered by hospice. We were allowed to keep the equipment we had been using for the last two years because to eliminate them would...
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    Classic Bi-Pap vs Trilogy 100

    Trilogy is portable. That is one of the biggest benefits. It has been a godsend for us.
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    respiratory onset ALS

    JK: The problem is that the doctor who ordered the intubation would have to feel comfortable about removing it. That's why we have heard many warnings about winding up in an emergency room. Hospital doctors want to save lives, but most of them don't understand ALS. You are in a very...
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    respiratory onset ALS

    Hello, All: Perhaps we should move back to the point of the thread. An older man has been diagnosed with ALS to an 80% certainty with respiratory onset. His family has been told that he will need a tracheostomy. His son is confused and wonders about life expectancy and the quality of life...
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    respiratory onset ALS

    To reply to Diane's desire for clarification regarding tracheostomy question: the pulmonologists' answer to our question "Would you, yourself, have a tracheostomy if you had ALS?", their answer was no. I don't believe their answers can be termed "pure bull." After all, we asked their opinion...
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    respiratory onset ALS

    My husband was respiratory onset. His initial "tentative" diagnosis was in October, 1009. He does not have a PEG. He did not have a tracheostomy. However, he does use a non-invasive ventilator almost 24/7. The device is called Trilogy. It is portable. He breathes through a very...
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