Tilted Forum Project Discussion Community - View Single Post - Should dying patients be allowed to take experimental drugs

shakran · 06-07-2008, 04:09 PM

the answer to this is an unequivocal yes.

My dad died two and a half weeks ago after having a degenerative muscle disease for almost 2 decades. He was 62. No cure for this disease (inclusion body myositis if you're curious), you just slowly waste away. He was at the point where he was in a power wheelchair full time. He really only had slight use of his right hand and that was it. Just enough to move the chair's joystick. Mom had to do everything for him. Everything. Dress him, bathe him, lift him onto the toilet, clean him off when he was done, lift him back into his chair, put his deodorant on him, shave him. . Everything that you and I take for granted, he couldn't do.

He hadn't slept in a bed in years because it was just easier to recline his wheelchair.

He finally got aspirative pneumonia because even the muscle in the throat that closes off your windpipe when you swallow (pharyngeal sphincter) was failing. He breathed in his own saliva and it got infected. When he got to the hospital his oxygen sats were at 42. The goal is 90-100. They tried an oxygen mask, but it didn't get him oxygenated fast enough so they had to put him on a ventilator.

When you go on a ventilator, your diaphragm atrophies because it isn't doing any work -the machine is doing it for you. Normally you just rebuild the muscle once they wean you off of it, but his disease meant he couldn't do that - he would have to have been on a ventilator for the rest of his life. That's no way to live. Instead, he made the decision to pull the ventilator. He died 9 hours later. I was there the whole nine hours and watched him die. It's not something I would wish on anyone.

There's a drug out there that they think might not only stop his disease, but reverse its effects. Been out there for several years, but the FDA won't let it be given to humans yet because it might not be "safe." So, instead of possibly having a life saving treatment, he died, all in the name of the FDA protecting him. From my view, that's just stupid, wrong, and a complete waste.

06-07-2008, 04:09 PM	#33 (permalink)
shakran Tone.	the answer to this is an unequivocal yes. My dad died two and a half weeks ago after having a degenerative muscle disease for almost 2 decades. He was 62. No cure for this disease (inclusion body myositis if you're curious), you just slowly waste away. He was at the point where he was in a power wheelchair full time. He really only had slight use of his right hand and that was it. Just enough to move the chair's joystick. Mom had to do everything for him. Everything. Dress him, bathe him, lift him onto the toilet, clean him off when he was done, lift him back into his chair, put his deodorant on him, shave him. . Everything that you and I take for granted, he couldn't do. He hadn't slept in a bed in years because it was just easier to recline his wheelchair. He finally got aspirative pneumonia because even the muscle in the throat that closes off your windpipe when you swallow (pharyngeal sphincter) was failing. He breathed in his own saliva and it got infected. When he got to the hospital his oxygen sats were at 42. The goal is 90-100. They tried an oxygen mask, but it didn't get him oxygenated fast enough so they had to put him on a ventilator. When you go on a ventilator, your diaphragm atrophies because it isn't doing any work -the machine is doing it for you. Normally you just rebuild the muscle once they wean you off of it, but his disease meant he couldn't do that - he would have to have been on a ventilator for the rest of his life. That's no way to live. Instead, he made the decision to pull the ventilator. He died 9 hours later. I was there the whole nine hours and watched him die. It's not something I would wish on anyone. There's a drug out there that they think might not only stop his disease, but reverse its effects. Been out there for several years, but the FDA won't let it be given to humans yet because it might not be "safe." So, instead of possibly having a life saving treatment, he died, all in the name of the FDA protecting him. From my view, that's just stupid, wrong, and a complete waste.