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glupavomomiche

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Joined
Sep 25, 2011
Messages
282
Reason
PALS
Diagnosis
09/2011
Country
US
State
Texas
City
Podunk
I saw a pulmonologist last month and he started me on a lot of new meds to try to keep the asthma better under control so we'll have an easier time identifying breathing problems related to ALS. Once I started on those, the crud in my lungs has turned loose like crazy! I let my neuro know and she ordered a Cough Assist. It was delivered last week and I have been using it faithfully, twice a day. I see that it does help some, especially now that I've used it a bit and tweeked the settings to get the best possible result. HOWEVER... still hard getting this crud up.

The RT who delivered my cough assist actually mentioned that he feels the vest is more beneficial in ALS than just a cough assist. I'm wondering, does the vest really do a better job?

I know there is a clinical trial at my clinic (I'm not eligible for it due to living so far from the clinic) and they are trying folks on just cough assist, just the vest, and another group doing both. Are any of you in this trial? Anyone (trial or not) who use both? Thoughts?

Your input is appreciated and thanks for taking time to answer! :D
 
Sarah,
Rog uses the compression vest (LOVES IT), then the cough assist, then the suction machine...prior to this colds used to last at least a month... With those 3, a week... Get all 3!

Jen
 
Thanks, Jen! I talked to my nurse at the clinic and she is ordering the vest!
 
With asthma too, your RT is correct--the vest WOULD help. I had one when I was in the hospital with severe asthma. It helps to loosen up the crud so it can work it's way up.

Pneumonia is not your friend. You'll need to be extra cautious. I assume you have a nebulizer? If not--you likely need one. They will make you cough more--which is a good thing for getting stuff up.
 
Yes, I do have a nebulizer now. It had gotten where I couldn't use the inhaler anymore (not enough hand strength and coordination), so the pulmonologist prescribed one. My neuro also told me to start taking Mucinex and that DOES help quite a bit! Wish I had the vest already... they're still working on it.

Thought I just had a cold end of last week, it got worse over the weekend, so went to doc yesterday and got a chest x-ray. Thank heavens it's just bronchitis and not pneumonia! On antibiotics to clear it up!
 
Oh Sarah,

What a time you've had, sorry about the bronchitis and glad its not pneumonia. Lots of water with the mu cin ex. Hope you feel better soon!

Jen
 
Feel better soon. I hope you get the vest and cough assist soon. The CA was a blessing for me when dealing with allergies and post nasal drip earlier in the season.
 
Please keep up on the bronchitis! Every time I get it--with my crap lungs--I end up with pneumonia. Watch it very, very closely. At least in FL, the bronchitis doesn't put me in the hospital every year like it did in VA.
 
It sounds as if you are on thr right track; please grab every piece of equipment you can get and see if it helps.

If you can manage to get lots of water into you that will loosen the garbage and make it easier to clear; not very high tech but tried and tested over many years.

They used to tip me upside down and hit me, otherwise known as postural drainage and percussion therapy.

Your way sounds better!
 
Bronchitis seems to be gone now. Took the last antibiotic this morning (Reminder to self: get liquid next time, can't swallow pills and they didn't crush well). Have to wait until clinic visit at the end of the month to get the vest ordered. Since I wasn't having these problems at the last visit and there's nothing in my chart about it, insurance will just deny it since I already got the cough assist. Bleah.

Grateful, we know all about postural drainage... I have a cousin with CF. It does help, but requires another person and that's not always convenient right now.

Thanks for all the responses :D
 
sarah, just for info...tussin is liquid muc in ex. the d r u g name is Guafenesin that is what thins secretions and helps them move. You can buy it in most discount stores annd here our dollar store carries it. (tussin as in r o b u tu s s i n without anything else in it)
 
Glad to hear that the bronchitis has cleared up though sorry to hear that you will have to wait to get the vest ordered.

Please say hi to your cousin for me; I'm usually treated on the CF ward, though what I have is a bit rarer, so I know quite a few people with CF. Nowadays this tends to consist of waving at each other from a distance since I do not want their bugs and they most certainly don't want mine!

Just a word of caution for your cousin; over here they have stopped the tipping us upside down bit because they are concerned that acid from the stomach may actually be damaging the lungs. The percussion therapy continues; I have always felt that having sex with a drummer would be a lot more fun...
 
Marypat, thanks for that tip! I will look for that instead!

Grateful, you crack me up!

Finally got my vest ordered... it should arrive tomorrow from U P S, but then have to wait for a trainer to come and get all the settings right and stuff. The neu ro lo gist told me to put on my BiPAP before and while I use it, and it'll be 30 minutes twice a day, then do the cough assist after that. Is that how you guys do it? She also told me they're working on making a new somethingorother that will do the vest and cough assist all in one, but it's not ready yet. Curious to see what that will be like!
 
Got my vest all set up yesterday. This morning was the third time using it. I do 15 minutes (5 minutes each of three different frequencies) while wearing my BiPAP, then follow up with the cough assist... all twice a day. WOW! It all really works! Whoo hoo! :D
 
That's wonderful news, and I'm really thrilled that it works! Shifting the gunge is literally a life-saver.

Still probably more fun with the drummer, though, particularly given your musical skills...
 
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