Mucus and breathing issues

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Cherise77

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We’re entering a very scary and sad stage of my Dad’s ALS journey.

Since October 2022 he’s been having coughing episodes. Several a day, lasting an hour or two at a time. At night is the worst. He’ll wake up gasping for air, choking on mucus. My Mom has to take his BiPap off, sit him up and start the nebulizer and manual cough assist. The Respirologist said he had pneumonia based on an X-ray and CT scan so he’s been on a round of antibiotics every month and then follow up X-rays. Now she’s saying that something is still showing up but doesn’t look at pneumonia. She thinks it’s Atelectasis.

In the opinion of the pALS and cALS in this forum, what are we looking at here? Is it time soon for a trache? Is choking on mucus at night something that a person can pass away from?

My Mom thought she was having a heart attack this morning and went to see her doctor. She wasn’t but just so stressed out. She’s thinking the worst and we’re just not sure. Do some people live like this for years? Does it get better with medications to thin the mucus?

Thank you for any advice you can provide. I appreciate the support 💜
 

Tomswife

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Are you using a suction device? We use a Devilbiss homecare suction unit. This is a critically important tool. He cannot bring the mucous up even with cough assist. Must use this device.
 

Cherise77

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Thanks for your response. Have fun do you put the suction device into his mouth/throat?
Our respirologist said they didn’t need one as he isn’t having saliva pool in his mouth.
Are you using it for mucus though?
 

Wilson2009

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I had a trache done 14 months ago for essentially the same issue. My airway was blocked by mucus several times a day and night. Both my wife and I were exhausted from dealing with the choking. The trache was instant relief from the choking and significantly improved my quality of life. Of course, a trache brings its own set of issues and maintenance needs into play, but in my case, everything is much more controllable with the trache in place. By the way, I am on room air with the trache.
 

Tomswife

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The suction device is strong enough to pull the mucous up his throat. To be specific, i get light mucous and sometimes gobs of mucous. If I did not suction him he would definitely have returned to the hospital!!! In fact, I told them we could not go home until I had a suction device at home, since we did have one in the hospital.
The mucous is being sucked up his throat. I do put the wand in the back of his throat.
Sorry for the TMI post...but this is ALS.
YOU MUST HAVE THIS, IMO.
Tom does not have a trache.
 

Cherise77

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Thank you for responding.

May I ask what your FVC scores were when you got the trache? My Dad’s last test in January was 58% standing and 20% laying down.

Also if you don’t mind answering how often is your tube changed out? And does it hurt?
His Respirologist is trying to talk him out of a trache. Saying he has to have a tube change every 4 weeks and it’s very painful.
He decided at the beginning of our ALS journey that he wanted a trache but it’s disappointing that the medical community doesn’t often support that decision.
 

Cherise77

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Thank you @Tomswife
That sounds like it would be very helpful! Frustrating that his doctors don’t recommend devices that can obviously help. I’m going to get one for them to start using.
I appreciate your help with this.
 

lgelb

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I'm sorry your mom and dad are dealing with this. People do not usually die during coughing episodes, but they may die because of cumulative respiratory overload. Usually this is not a lot-of-years thing. Several hours a day of coughing, in addition to the things linked below, suggests reconsidering BiPAP settings, bed position, etc. It is too much for both of them. Let me know if you want BiPAP help.

Does he still swallow at all?

A suction machine is not even right, let alone a necessity, for all, so worth trying but don't feel you have to use it if it doesn't help (like anything). Sometimes nebs and CAs can be more irritating than helpful, so I would experiment with the protocol. When you overtrigger the cough reflex or exhaust the muscles, that can set up a vicious cycle. Occasionally, we've had someone who felt better by discontinuing the CA entirely.

Rather than suspending BiPAP during episodes, it can be better to deal with the coughing using a nasal mask and continuing the BiPAP, at a fixed usually low IPAP/EPAP (for some people, even equal IPAP/EPAP, i.e. CPAP mode) with the volume target and backup rate turned off. That gives the PALS a steady volume of air to prevent airway collapse during coughing, which can lead to choking.

Usually in any given region, there are centers that are more familiar with trachs. If he wants one, I would find such a center, at least to consult with his existing one. I would first talk to/visit PALS with one, even on video, and watch videos as well. You may be able to network via Canadian ALS sites/societies. Of course, trachs have to be suctioned. Like all equipment and aids, some people do better with them than others. That is why I would get a consult with a knowledgeable pulmo who can review his records and X-rays. If the center is far away, there are Bluetooth stethoscopes, etc. for video visits.

There are also many other ways to thin/reduce mucus.

Best,
Laurie
 
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Tomswife

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If you are interested in a suction device, I would advise speaking with your physician. Our pulmonologist ordered our device. He thoughtvwe must have one. I have found it to be a necessity. When I suction Tom he stops coughing. That is my goal. To stop/lessen the relentless coughing and give Tom comfort. Talk to your doctor.
 
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Tomswife

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Medication. Tom was on mucinex/robitussin until last week. If you do use OTC meds try to use the version without acetaminophen, so there is no conflict with other pain relievers. If you can find guaifenesin (expectorant) alone that is helpful. But it seems to always be combined with a cough suppressant, dextro.
Tom is now on presciption mucous medicine. It has made a difference, and ended the relentless coughing. You could speak to PALS doctor about an Rx and the effect of expectorant, and cough suppressing.
 
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Jimi

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I got my trach in September '21. In terms of protection of the airway and removing mucus from the lungs it's been a big improvement. Once we figured out the method with the cough assist I was able to remove the suction catheter. My wife changes my trach tube every 8-12 weeks. First few times I had to go to the ENT. My ENT is a great guy. He let my wife practice while he supervised . It's not painful. The newest model trach tube from Medtronic…the balloon deflates to almost the same diameter as the tube and it is almost painless. I'm 100% ventilator dependent. Before getting the trach I had many difficult times removing mucus. It's no longer an issue.
To be clear, there's nothing natural about having a tube in your throat. It sucks. But if you want to live, it is the only game in town, long term.
 

Wilson2009

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My wife changes my cuffless trache at least every 90 days. It is a painless procedure. The inner cannula is changed daily and again is a totally painless procedure. My FVC was 108 while seated the last time it was tested before the tracheostomy was performed, which was four months prior to the operation. The operation itself was what is called an awake tracheostomy as I could not be intubated nor could I lay flat on my back due to secretions. They numbed my throat area and created an opening into my trachea. With the trache open, they then put me to sleep to complete the procedure. I had a five-day recovery stay at the VA and went to a rehab facility for 5 days.

I second Laurie's comments. Find a pulmonary specialist or ENT specialist that is well versed in traches to provide you with a comprehensive assessment of the pluses and minuses of a trache, what is required to maintain the trache, and what training you can and your Mom can get as CALS prior to the placement of the trache. Your Dad and Mom as well as yourself need to fully understand what to expect going forward
 

Cherise77

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Thank you everyone for your advice. We appreciate the support.

My Dad is on antibiotics again and had a better sleep last night. This is a terrible cycle we’re in but every time he starts antibiotics there is some relief for a couple weeks and then the terrible coughing and struggling at night starts again. I just pray this time will be different and it won’t come back 🙏🏻 such a difficult disease to navigate.
 

Mary2

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Cherise..I will pray the antibiotics help and that this time will be different.
 
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