Help- Advice needed on PEG, bipap, vent

[ccjjcc]

Hi, Haven't posted in awhile. Moved my brother to my state a few weeks ago. He was
already diagonosed, and already in a wheelchair. He can only move his left hand a little
(and uses the computer with it) and he can still speak and eat.

He has been having increased trouble breathing in the last few days. We were supposed to go to the ALS
clinic right before Thanksgiving, but the weather caused the transportation services to
cancel at the last minute. So they fit us into the clinic last week. His breathing tests were all low.
FVC=37% MIP= -15 MEP = +20 CPF= 200. They ordered a bipap and said he is
"weeks" from a vent. They want him to get the feeding tube first, as in asap.

We're waiting for the bipap to be delivered, there are some quirks with the insurance, but
it should all work out. Meanwhile, since last week, he has had 2 episodes where it has
been harder to breathe.

The ALS clinic wants to do the feeding tube right away - even though he can still eat,
because his respiration is so low. I understand that. I'm worried about him getting it
if he doesn't have the bipap yet. Shouldn't he have the bipap before the peg so he can
get thru the procedure better?

Meanwhile, the nursing home where he is is saying they can get the trach first (and
vent?) and the feeding tube afterward. They have a vent wing, but my brother isn't in
it yet. He's in the regular part. And I guess they don't have good protocols in place
for going from where he is to the vent wing, because they said the people they get
in are already on the vent that go to that wing.

Then, both my brother and I got the feeling from the ALS clinic that going on a vent
was greatly discouraged. In fact, if he chooses that, he has to go to a different clinic, they won't even touch it or handle it.
They were warning him that he could "get locked in". I understand warning, but
he got no encouragement at all for the vent. Even at the ALS support group meeting, the moderator was very discouraging about getting a vent, again mentioning in dire terms that he doesn't want to get "locked in, and wanting to bring someone in who
had a spouse who was locked in for 8 years to talk to my brother and discourage him
from going on it. I support whichever way my brother were to decide, and he as been very adamant he wants a vent. So why is everyone so completely negative about it? His progression has been very rapid, as in, he was still working a year ago and only had a symptom in his right arm that started then. I guess they were saying you have more of a chance of getting locked in if the progression has been rapid. But we don't know that that's what would happen to him. And despite that, my brother still wants to be vented and I support his decision - it's HIS decision.

Is it too risky to get the PEG before the bipap? Is it really true that you can go on a
vent first and PEG afterward sometime? He is surmising that it is eating that is contri-
buting to the increased trouble breathing. And the bipap isn't covered on the insurance
he has but a different program will cover it Jan 1. I don't think he can wait that long,
so I'll be trying the loaner closets tomorrow.

Any advice, anyone?

 

[joelc]

WOW, I am sorry for what you guys have had to endure. I get so upset when people have to experience the kind of advice you have gotten.

As you know I have had my trache and vent for 2.5 years now and it was the best decision I have ever made. It literally gave me my life back.

You can get the PEG before or after the bipap or trache and vent. I recommend doing it now! As soon as it can be done. But make sure you have a gastrologist doctor who has done MANY of them. My FVC was lower when I got my PEG, it only took 5 minutes and I was awake for most of it and the doctor left me in a sitting position. It was not a problem at all. I took my bipap with me but did not have to use it at all.

He needs a bipap ASAP. It he has decided he wants a trache then make arrangements to have have it done soon. Don't wait too long. That is what I did and since it was not an emergency the recovery time was non-existent. I encourage him and you to make arrangements for it to be done, don't let people tell you it is the wrong thing to do.

Use me as an example, my life is great! As far as getting locked in, with the technology available to us today that is highly unlikely. The only movement I have left is a small amount of movement in my head and look at what I can still do. Don't worry about that at all. Take on day at a time and enjoy it to the fullest.

I don't know if you have visited my website, I have documented my experiences there. Look at the Content Index and you can find bipap, trache, vent and all kinds of information. Living and Surving with ALS
If I can answer anymore questions please ask.

 

[ccjjcc]

Thank you, Joel. God bless you. I'm on my way over there now. Looks like the only way we can get the bipap is for him to go to the
hospital, since the insurance that covers it won't kick in until Jan 1. Even though I can get a loaner from the loan closet, the NH can't
use it. I've talked to the hospital and they won't leave him without a bipap or send him back to the nursing home without one.

The nursing home actually has a vent wing, once he's at that point. Thank God.

I'm now wishing I had the local clinic doctors closer. We went to a major town 40 miles away. I don't want him to get hospitalized up there,
better down here, closer. But, need to clarify who he goes thru for vent and feeding tube. (sigh - it's been so frustrating, being all morning
on the phone trying to find out who will do what or isn't on vacation!)

We'll keep you posted. Really, it is a godsend to be able to get the input from forum members.

 

[joelc]

Good Luck! Remember that I am here to share what we went through. We also had to fight for a trache and vent. We were told the exact thing you guys were told but we fought and won. You can too! God Bless!

 

[LornaDoone]

Is it common for people to be discouraged from medical professonals if they want a vent? Why would they discourage anyone from this type of intervention? And what does Locked In mean?

Thanks

 

[joelc]

It is very common for medical people to discourage anyone from getting a trache and vent. They don't seem to realize that a person can have a good quality-of-life with one. They can't see themselves with one so don't think others should have one either. In their training they have been brain washed.

Being locked in means just that, no having any movement and not being able to talk so you are not able to communicate. But with current technology that is very unlikely. There are devices that you can control with your eyes.

 

[LornaDoone]

Explain not having any movement.. many PALS that have a vent can't move anyways so what's the problem?

You can not talk with a vent eh? Can you whisper or anything? How do you communicate? Is it common for people going on a vent to be able to talk effectively anyways? That's gotta be super tough getting used to!

 

[LornaDoone]

Although my PALS says she does not want one, I'd like to know more. If she changes her mind, I'd like to be able to answer some of her questions. I do not take sides on the debate over whether to or not to. Just wanna be educated so she can make up her own mind.

 

[joelc]

Explain not having any movement.. many PALS that have a vent can't move anyways so what's the problem?

You can not talk with a vent eh? Can you whisper or anything? How do you communicate? Is it common for people going on a vent to be able to talk effectively anyways? That's gotta be super tough getting used to!

Sorry but I find your questions a little questionable. LOL.

No movement is just that, not have any movement in their arms, legs, hands, head, etc. Many PALS that have a trache and vent still have the use of their arms, hands and head. Others still can walk, eat and talk. I could. I was still able to eat and talk up until a couple of months ago.

You communicate with a computer or message board etc. There are too many devices to list.

 

[LizT]

my PALS has been on a vent for almost 6 years now. he is "locked in" and has been for almost that whole time. He uses eye movements to communicate, as he doesnt have an eyegaze or anything like that. He can still make a few facial expressions too.
Dont let your doctors make that decision for you. If you guys are interested in having a trache and vent, then do it! People can still be happy and have normal lives. Yes, of course it is an adjustment, but with a trache and vent, ALS wont necessarily get ya. A good ol' heart attack or something else will get ya. you can throw away the "2-5 year" prognosis.

 

[ccjjcc]

Please keep my brother in your prayers...I've been at the hospital with him since Wed early AM, and basically he is getting a trache tomorrow morning.