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Emily B.

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CALS
Diagnosis
11/2013
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US
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Hello all,

I have never posted here, but certainly have used the forums for getting advice for everything! I appreciate everyone here who takes the time to help those with ALS and us CALS. My husband was diagnosed in Nov. 2013. Limb onset at 48 years old. He's done pretty well for someone with ALS and we have tried to make the most of the time we have. However, clinic visit on Friday was not so good. FVC is 15%. He is completely PWC bound - uses trilogy at night and a lot during the day. We are seeing a pulmonologist (one we got at a recent hospital stay due to a choking episode) in early October. How close are we to making a decision about the trach? He still talks; still eats soft foods. He hasn't made a decision about the trach. So, my real question is how much longer can he last without the trach? (Note the FVC was 24% in June).

Thanks all!
 

KimT

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08/2015
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South
It wouldn't hurt to decide, one way or another, now. After the decision has been made, you will be better able to put things in order for either scenario.

There is no way to know how much longer he, or any PALS, can last without a trach. Does he already have a feeding tube placed?
 

lgelb

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Lost a loved one
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Emily,
I'm sorry that there's no way to answer your question, but you and your husband do not want to face this [or any] decision under duress, so I would certainly talk about it.

Everyone is different, but my husband also talked and ate, while on 24/7 BiPAP, when he became too weak to transfer and decided that was enough. So you might discuss a number of scenarios, not just the trach.

Best,
Laurie
 

Emily B.

Member
Joined
Sep 23, 2015
Messages
18
Reason
CALS
Diagnosis
11/2013
Country
US
State
Alabama
Thanks - yes, he already has the feeding tube placed (had it for 3 years!), but haven't had to use it. We are going to get home health to help us as we start to supplement (he lost 10 pounds between June and September). Laurie, sounds like your husband did not get the trach?
 

lgelb

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No, Emily, we never seriously considered a trach. But several CALS here care for a PALS with one and have discussed the implications.
 

Buckhorn

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Joined
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Messages
725
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
Welcome Emily. You will receive great advice here. As already stated, there is no real timetable for knowing exactly how things will progress, so better to make sure you know your husband's wishes. I don't mean to sound harsh, but, as far as i know, there is no reversal for ALS, even IF a "cure" was found tomorrow, most neurologist would agree that the process itself is irreversible. That said, you need to know your husband's tolerance for living under what kind of conditions. My husband is still quite capable of chewing/swallowing/talking and is on a Trilogy (non-invasive vent) almost 24/7) but everything else is going South pretty quickly right now. He doesn't think he wants a trach ....... but the option is still open, depending upon what other losses he has incurred and how much he can take. Does your husband have a durable power of attorney & living will? These are essential.
 
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