I can't breath

[Janie H]

Having a terrible time breathing. Yesterday I thought it might be my last. My CALS called the clinic director (I go tomorrow) and asked if there is anything that will force meds into my lungs. She was rude and said that there is no magical med that she knows of, there are so many good people at the clinic but I wish I didn't have to go, what a let down. Didn't want to go to the ER and see someone who does not know my history. Woke up today and feel better, I have lost confidence that anyone cares enough to help me. Hopefully tomorrow will change my mind. Just venting.
Janie

 

[dalvin]

Janie, ask yourdoc about a rescue inhaler. I'm using proair hfr, albuterol. doesn't do anything for the diapraghm, but it opens up the air ways so its easier to breathe

 

[zoohouse]

Janie, was it because your chest felt tight and wheezy or that you just couldn't get a large enough breath? Tim started using his nasal pillows on his Bipap back in November while we waited for his sip & puff. I know a gentleman that is completely reliant on his ventilator (sip & puff) and it will deliver a nebulizer of bronchial dilator to him. Sorry about your difficulty. Morphine in very small doses can also help.

Paulette

 

[skipper66]

Sorry you are having problems Janie!

However, if they were truly rude with you please have that addressed as well. It shouldn't ever be tolerated in the medical profession.

 

[Janie H]

Dalvin, you may be interested in this, they gave me a nebulizer piece that hooks to my trilogy machine, turns out there is a (magical) way to get meds down into your lungs.Paulette, that must be what you are speaking of, yes, it was a tight chest and wheezing. My son Jack gave them hell yesterday about the remarks. I'm getting new meds to add to my collection but can't get them today. Turns out I'm not dying yet, my numbers were pretty good. Albuterol being forced into my lungs feels great! Back on predisone again.

 

[adozi]

Janie, do you have cough assist and suction machines? Someone was selling a cough assist a month so ago. They are designed to open your lungs and suck the mucus out.

 

[MaxEidswick]

>do you have cough assist and suction machines?

Ashley, how does the suction work?

 

[Santa joe]

Janie, hope you are breathing better now. Thinking of you.

Debbie

 

[dalvin]

Max, the suction machine is similar to the ones used at the dentists office. It has a wand that you put in your mouth and move around to suck out fluids. Its fairly long so you can get it to the back of your mouth. It'll pick up some pretty thick stuff. Simply turn it on and move the wand around. Has a small hole in the side of the wand you put your finger over so it'll suck, a safety feature in case you have it adjusted too high and connect with something you want to keep, move your finger and the wand loses its suction. Kind of hard to explain but when you see it in action you'll understand. Call your pcp at the va and they should order one for you. Took about a week to get mine

 

[MaxEidswick]

>Call your pcp at the va and they should order one for you. Took about a week to get mine

thanks, Dalvin!

 

[Janie H]

I have a cough assist, the suction sounds interesting, thanks.
Janie

 

[adozi]

Yes, it's very handy. Imo, they should always be prescribed together. Spitting is a lot of work, and with the suction machine, you can get it farther back and suck out of your throat.

 

[ECpara]

My husband has cough assist and suction. Cough assist is supposed to get air into the deep recesses of the lungs where mucous collects, and break it up. The suction machine is a Godsend - he sucks away excess saliva and mucous all the time, it is such a problem (although better since getting Botox every 3 months). Not sure how either machine would actually help with breathing (his Trilogy helps with that).

 

[adozi]

ECapra, Part of the reason for depleted breathing capacity among pALS is the lungs filling with mucus. They are so full and sticky with it that we have to open them up and suck it out.

 

[MaxEidswick]

>My husband has cough assist and suction. Cough assist is supposed to get air into the deep recesses of the lungs where mucous collects, and break it up. The suction machine is a Godsend - he sucks away excess saliva and mucous all the time, it is such a problem

thank you all -- I've just passed the conversation to Sandy ...