ccjjcc
Active member
- Joined
- Jul 18, 2010
- Messages
- 88
- Reason
- Loved one DX
- Diagnosis
- 08/2010
- Country
- US
- State
- XX
- City
- where it's green
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?
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?