Recent content by vlcare

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...

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...

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...

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...

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...

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

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...

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...

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...

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...

My husband did not want to remodel the house just to have a shower. After it was no longer safe for him to use our shower (with handrails and shower chair), he opted for sponge baths, which I provide and which are completely adequate and satisfying to him. He has never had a skin infection of...

Oh, dear. Are we going down that road again? I feel compelled to point out, adozi, that what is not helpful is being critical of another responder's comments. If my comment disturbs you, then you will know how Katie feels. Our focus should be on the topic of the thread--not each other. VL

The hospital bed has been a huge help for us also. I sleep in the guest room nearby and get restful sleep, knowing that my husband will ring his bell if he needs help during the night. The hospital bed allows easy (both sides) access when changing bed linens or bi-pap adjustments or...

Regarding the urinal. I keep two on hand. My husband uses the urinal during the days while in the PWC and also in the bed at night (with only a night light to guide him) while he is flat on his back. I keep a wheeled cart next to his hospital bed with a clock, a bell, and his urinal(s). So...

Hello, again, Fighting A: To answer your question, at the time my husband was formally diagnosed in 2010, his best case FVC was 65. He was using accessory muscles to breathe. His prognosis according to two ALS physicians was dim. One recommended PEG immediately. Both pointed out that an...