End stages

[Drewsmom]

Hey just wanted to update.
Yesterday my pals had his last appointment with his neurologist. She assured him that hospice is managing his care well and that she would continue to be his neurologist, but that there was no need for a follow up appointment. He has continued to stay in denial. Hopefully this will help him come to terms. He is in the bed 23 hours per day, sleeping a good majority of that time. Hospice has changed him from morphine to methadone. Even in large doses of morphine - he remained in pain. His neuro checked his fvc yesterday and his readings were .1, .4, and .4 of 1 liter. So less than 10 percent. He should be at 5 liters for his age and height. He had a good seal on the mouthpiece. He does have throat weakness, but not sure if that can contribute to the low numbers. It's amazing to me he can still stand and walk with his low numbers and the amount of medication he is on. This disease is crazy.

 

[Atsugi]

Thanks for the update. We can all learn from it.

At some point, the doctors have nothing more they can offer, and the only thing that matters is keeping the patient comfortable hour by hour.

It's amazing how far the body can push itself. My mom was still participating from her wheelchair, speaking and transferring with help, when her heart was hardly pushing out one or two weak beats per minute, I think. She lived a couple of years with very little heart and lung action. The body might just get used to it.