coughing and difficulty breathing

[worrieddaughter77]

My dad's coughing returned again. He was doing fine for several months but now he coughs every evening again. It's difficult for him to go to sleep because of it. He doesn't cough in his sleep though. He says coughing is mostly due to accumulating mucus. It accumulates in his throat and causes the cough. My dad gets completely exhausted from coughing.

His ALS dr doesn't seem concerned about it. He just said to continue using the BiPAP without any suggestion on how to make my dad feel better.

However, today my dad got really scared since after using the BiPAP for the whole night he woke up and couldn't breath at all. He said he wasn't able to breath at all for about half a minute until he coughed the mucus out and then started breathing. He seems very distressed by the experience.

Do you have any suggestions on what my dad can do to feel better?

Thank you!

 

[GregK]

Request a Cough Assist. Trilogy makes one.

Google it!

 

[worrieddaughter77]

We did request the cough assist during my dad's last ALS clinic visit, but the dr said he won't prescribe too many machines at the same time cause its overwhelming all at once. ( my dad did get the BiPAP, nebulizer, and the suction machine prescribed then)

Now, after my dad contacted him with his cough problem, the dr again didn't suggest the cough assist.

We will call the dr again tomorrow and make the explicit request! how long will it take for it to arrive?

 

[GregK]

That's hard to answer.

It will depend on the paperwork and the speed of your provider.

It will most likely come from the same folks who provided your vent.

Call them and ask.

 

[lgelb]

It will arrive faster if you first bird-dog the doc getting the order to the DME, then contact the DME early and often about getting authorization from insurance and then scheduling delivery soon thereafter. If they do not have stock, they can get expedited shipping, but that will not be their usual practice, as they usually have a backlog of deliveries so are not looking for fast shipping.

When it arrives, if no one in particular is looking for it, it might sit on the dock and not get on the schedule. Basically, you may have to be the squeaky wheel for things to happen as fast as possible.

 

[tripete]

if you are not doing so have him take 2 Alka Seltzer tabs in a glass of water each day. If you need to do it twice a day. My wife found this for me three years ago. I have posted it here many times and to my knowledge everyone who has tried it has agreed that it cuts down or completely eliminates mucus. It works for the day after you drink it. So if he drinks it today he will have less or no mucus tomorrow. And from what others have posted it will work through a feeding tube also. I had a cough assist but no longer use it because the Alka Seltzer works so well.

 

[worrieddaughter77]

Thank you all for your comments! my dad does feel better already after taking two alka seltzer tablets in the morning!

Also, the cough assist and the vest are already on their way to us! The drs reacted to our request immediately, I'm very grateful for that.

we also installed a humidifier in my dad's room.

Another suggestion that came from my dad's dr was to use saline solution in his nebulizer. he's going to try it tonight.

 

[GregK]

Great!

Be aware that you can get humidifiers that connect to the vent. that's what I use.

What make and model vent (BiPAP) does your dad have?

I use a "Fisher & Paykel HC150 CPAP Heated Humidifier" on my Trilogy 100. Note that this is for a noninvasive vent setup, when I have to go invasive (trachestomy) a different humidifier will be used.

 

[lgelb]

Yes, everyone should have humidification and clean filters for any kind of PAP -- thanks, Greg, sometimes we take it for granted, and shouldn't.

Besides the Alka-Seltzer (which should not be used by those with certain heart, liver or kidney issues), papaya or pineapple juice or tablets can help. Even Coke or other soda.

 

[worrieddaughter77]

unbearable cough

So my dad got the BiPAP, nebulizer, the cough assist and the vest last week. However, after using all of these his cough is not getting better but only worse. He started coughing out some mucus now, which is probably a good thing. But I just can't bare hearing him coughing for several hours straight after finishing off with his nebulizer, vest and cough assist procedures.

Is this normal? when I contacted his ALS dr about his cough, the dr was convinced it was the result of part nasal drip, and wasn't concerned. So is this really common with ALS to have coughing spells like this?

I am getting really worried but don't know what to do about it. I know taking him to ER would be extremely tiring for him now. Also, I have a doubt they'd do anything useful anyway.

I'm just so tired worried...

 

[worrieddaughter77]

Thank you so much for all of the responses!!! My dad is not feeling better, though. I don't understand what is going on.

I still need to check if he has humidification in his BiPAP and what model it is. I will do it tomorrow. I was out of town when they delivered it, so I still have to do my homework.

But we are doing everything else: cough assist, vest, nebulizer, humidifier in the room, saline In nebulizer, alka seltzer, pineapple juice. He still has really thick saliva, and really exhausting bouts of cough. after his procedures he sometimes coughs for a coupe of hours. He is exhausted from it. it seems that all his days have become is to wake up, try to eat, then do nebulizer, vest, and cough assist, and then keep coughing for several hours until he is exhausted and needs to sleep again. He simply doesn't even have time for 3 meals now.

I am sorry I opened another thread about the same issue, maybe that one needs to be merged now. I am just so worried. Is this normal? Why are the drs sure it's not pneumonia or something with his lungs? What is the right thing to do on this situation?

Watching him suffer like this is unbearable....
Thank you all so much for the answers...

 

[worrieddaughter77]

I also have to add that because of the cough he slept only 3 hours last night, which really scared me given that he needs extra plenty of rest with ALS..

 

[KarenNWendyn]

You definitely want to rule out pneumonia or infectious bronchitis. Be suspicious if he is running a temp of 100 or greater, and request a blood count and chest X-ray.

 

[lgelb]

Re: unbearable cough

I would go back to square one (except for the BiPAP) and work back up. Not everyone does best with everything. Usually, he should not need the neb if he has the others. Is he using the vest and then the cough assist? Also, sometimes the prescribed pressures can be too high or low as with BiPAP.

I think the doc means that with ALS you can't cough out normal mucus as easily, but that doesn't mean not to be concerned, as it is exhausting, which feeds on itself, takes precious energy, wears out the muscles, etc.

Coughing for several hours straight is not normal, so I agree this regimen should be reconsidered. Also look at is everything clean-- hoses and chambers, clean filters, humidification at the right level, room temp, etc.

 

[Jlynn]

Worried..my brother did the same. He would cough all night. He said he could feel something (mucus) and would just continue coughing. He did not have peumonia as his lungs always sounded clear when checked. He had chosen the "no intervention" route. He did take a prescription to help dry up secretions and the doc tried to get him to take mucinex but he chose not to.I wish I had known to try alkaseltzer. I feel for you as I know how tough it is to watch someone going through it and the fear when they can't catch a breath for what seems a long time. I pray that you find something that can help him. Hugs to you.