Cough Assist Mask

[pbush]

My husband uses the cough assist device. It is really great. We had to order a replacement kit for the mask. When it arrived, the mask was deflated. Does anybody have an idea of how to inflate the mask? Does it have to be done by a respiratory therapist? User's Guide gives no clue....

We notified the service rep for the supplier but have received nothing but silence for four days. I held for 30 minutes this morning to no avail with Respironics "customer service" before I hung up in frustration.

Will appreciate some advice.

 

[Miss]

You can probably take the mask over to your pulmonologist's office and they will show you how. Any nurse with a syringe (no needle) should be able to show you how to do it. Get them to give you one of the syringes, and then you can adjust it yourself.

 

[pbush]

Thanks, Missy. We received the cough assist device through the ALS Clinic--about an hour away. They made the arrangements directly with the service company rep. The rep subsequently left to take another job. The current new guy knows nothing about the device (hence the silence).

I guess my next step will be try to get in touch with the respiratory therapist at the clinic and see if she can put a fire under the rep. Nothing is ever easy. I'll be lucky to get a call-back from the clinic. So much of every day seems to consist of wheel-spinning. Oh, well...

Ciao,
V

 

[Miss]

I know about the wheel spinning! Honestly, I would go to your doctor's office or up to the nearest pharmacy with the mask in hand. See if they can give you (or sell you) a 10 ml syringe without the needle. It fits on the nose end of the mask (where the red thing is). That's what you use to inflate it. The syringe acts like a pump. It is SOOOO easy. I wouldn't fool with the clinic if it is an hour away.

 

[pbush]

Thanks, Missy. I have to go to the grocery store later today. I'll stop by the pharmacy to see if I can obtain a syringe. If it's SOOO easy to do, that's my cup of tea!

Regards,
V

 

[Miss]

If you have any questions, let me know. I just inflated a mask last week!

 

[pbush]

Hi, Missy:

Just to update you:

Before I left home, I left a message on the voice mail of the nurse at the ALS Clinic. I suspect my voice was dripping ice--could have been worse because when I get frustrated I can go into rage mode in an instant. But I digress...

While I was out I stopped in the pharmacy. The guy behind the counter pointed me to an aisle. There I found a 10 ml syringe for feeding meds to babies. Okay, I thought, I'll give it a shot.

In the meantime, while I was gone, the nurse apparently grabbed the rep and gave him a couple of "appropriate" syringes (he had never seen them) and he hightailed it out to our house. He told my husband he had tried the pharmacy but they would not sell him a syringe without a prescription. So there the issue had lain for four days--until I called the nurse.

Now I ask you: why do people in the ALS community (caregivers and patients) have to climb these mountains (big and small) in addition to the turmoil and grief and loss in their daily lives? Ah, but that's a rhetorical question and a topic for another day.

To any who are reading these posts: by all means get a cough assist device. My husband's FVC hovers between 45-52 and he has never been suctioned and he is "practiced" in coughing when he needs to. It is a tremendous aid. I believe it is extremely beneficial.

Thanks again, Missy.
V