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Active member
Jul 28, 2007
A question: Do most people with ALS have to be hospitalized early-on or at all? The reason I ask is that the disability insurance I have through work has a catastrophic "trigger" which requires a 72-hr. hospitalization or a terminal diagnosis of 12 months or less to live before it will begin paying benefits. I hope to be able to continue working quite awhile longer but can imagine that it might come to being unable to work but not expected to die within 12 months. I was asking some questions of the disability ins co. rep and she advised me to get my doctor to keep me in the hospital for 72 hrs for something. But do most PALS have to be hospitalized? And if so for what?

I really appreciate this forum. I've been visiting here for about 2 months and now have gotten back from a great "it's time to do those things you always said you would do" Alaskan cruise and decided it's time to get serious about planning for the future. So I'm reading more and will probably have lots of questions. Thanks for answering.
Hi ilgal. Most of the PALS I've heard of usually only have to be hospitalized for breathing issues or pneumonia. Being put in hospital as a routine thing is not common. It depends how well you know your doc as to whether he would admit you for tests or assessment or whatever when the time comes. He may be able to say you will die within 12 months because who knows really how long you will last. After a year he can always say well who'd have thought she'd hang on this long?
Is this the only private disability insurance you have through your work? The insurance industry sure knows how to dream these policies up! We'll pay you but you better be dead in 12 months!?!

Like Al said, your doctor may be able to help you by providing documentation that you could go in 12 months. Who can say? (hopefully that will not be the case!:-D )

If you need a PEG, you could be hospitalized, but I doubt it would be for 72 hrs unless there were complications. Your insurance policy probably has stipulations on WHY you would be hospitalized in the first place.

Can you speak with your Benefits/Human resource person at work about this? It really is better to try and go thru them instead of directly calling the insurance company.
Yes, unfortunately this is only disability insurance I have. Except of course Social Security but its not much and doesn't begin until I have been not working for 5 or 6 months.

I did talk to HR at work but they didn't know the answers so referred me to the ins co. The woman there really tried to be helpful and truly made it sound like if I could be hospitalized for anything I could talk the doc into keeping me 3 days then I'd be okay. Darn! If only I had known--I had my gall bladder taken out last month; maybe I could have stretched that out. Just kidding. It was outpatient and I can and do want to keep working. I am being screened for the ceftriaxone clinical trial (the screening process was actually what found the gallstones) so if I qualify (still have to be tested for possible penicillin allergy) I will be having a central line put in, but that also will be outpatient.

Is PEG an inpatient or outpatient procedure. Although I still don't think I'd want that but I'm trying to keep an open mind about everything...

I guess I'll just have to hope that I'm able to work until 12 months before I'm ready to check out.
I believe most Peg placements are done as outpatient. My mom had her peg placed April 2, and we were at the hospital a maximum of 2 hours. The procedure itself took about 20 minutes. Do you have any speech, or swallowing problems? It is better to get a PEG placed earlier, rather than later. Mom resisted PEG placement at first, but as eating got more difficult she reconsidered. Within days she looked much more hydrated.

Most people don't have any complications from PEG placement, if done before breathing problems. Although, there are always exceptions.

I saw in another post that you have emotional lability. My mother is on Xanex .25 (rather small) strength, but it seems to really help. She has just started about 3 weeks ago, so it hasn't been a real long time.

Good luck!
My dad's PEG placement was inpatient, I think because he had some complications from the anesthetic, so they kept him in overnight for observation. Perhaps your doctor can order a sleep study to check on your breathing. That should be overnight at least.
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