MUCUS ISSUES: Please HELP

[retiredmus2010]

Hello wonderful pals and cals,
My husband is now having some terrible times with mucus. He uses a trilogy vent 24/7 now as we are coming up on a 3 year anniversary of diagnosis. Onset of symptoms is more of a 5 -6 year anniversary and so we are blessed.

I currently give me zyrtic, benadryl and used to give singulair but he has asked me to not give him this anymore because he feels it is not doing anything for the mucus.

He is not able to cough anything so prescribing an expectorant is useless. He can not take mucinex . We just yesterday began taking robinul because it is supposed to thin and loosen the mucus. So far, he has not seen any difference with this, but it is early in the prescription of this drug.

He is in his bedroom, right now and I can hear him gagging and attempting to move the mucus around in his throat. He ate about 7-8 crackers as that sometimes helps with the mucus.


DOES ANYONE OUT THERE HAVE ANY SUGGESTIONS FOR ME?
Thanking you in advance.
Sign me,
Not really liking this chapter of the ALS journey.

 

[Ms. Pie]

You need a machine called a cough assist and suction. Also take Tussin to thin the mucus. I'm sending good energy and prayers your way!

 

[Nighthawk]

Hi,

I am a PALS diagnosed with Bulbar onset about a year and a half.
I haven't yet had these episodes with cough and phlegm but I think that if you contact the ALS Clinic he is attending to, his Pulmonologist there could prescribe him a cough assistant machine so it can help him clear up the mucus from his lungs.

I wish I could be more helpful but I guess other CALS and PALS would chime in with more information for you.

Take care.


NH

 

[Ms. Pie]

In the mean time you can hit him repeatedly on the back to loosen the mucus.

 

[Ms. Pie]

Do you have a vaporizer? That might help.

 

[retiredmus2010]

Thanks ms pie and nighthawk( I see you are just "up the road" from us. LOL
We have a cough assist and a suction. My worries are with both of them, that he goes into such respiratory distress when the mask is off that it leaves me a little uneasy to go that route.

THe ALS clinic neurologist doc is the one who prescribed the ROBINUL. Unfortunately, the pulmonologist from als clinic is currently out of the country doing mission work and we will not be able to have contact until MAY.

 

[retiredmus2010]

No we do not have a vaporizer, but that is certainly a good thought. YOU GO GIRL!

 

[Ms. Pie]

I hope you and he find relief Dear One!

 

[Nighthawk]

Retiredmus2010,

I see like me, you're in Maryland.
Do your husband attend to the Clinic at JHU?

I go there and my Pulmonologist is Dr. Noah Lechtzin.
My next appointment with him is ending this May so he can measure how much my FVC has dropped (if any).
Last time it was 68% (Nov. 2012)

Take care, I hope everything goes well for you and your hubby.

 

[retiredmus2010]

Thanks a lot apple pie.... going to check on him one more time and then I am going to try to get some sleep... it is late here on the east coast.
g'night... very sweet dreams to my favorite pie lady!
G.

 

[Ms. Pie]

How is he doing today? Well I hope!

 

[caldona]

Does he have a nasal mask if not get him one he can wear it while using the machine and gives so much more freedom

 

[pearshoot]

have you tried stacking air for cough assist need info just ask

 

[retiredmus2010]

He is better today. Gave him zyrtic in the am, robinul 2times, and 2 pills of benadryl 3 times today. In addition to his morning coffee, and warm prune juice I brewed some hot tea and that seemed to help a little also.

He and I discussed this issue and have come to the conclusion that part of the problem was that he sat out on our deck on Monday afternoon for about 90 minutes. We did not realize at the time that the budding of the trees was going to give him such a bad go of it. It seems that in our neck of the woods, spring has "just sprung," as in OVERNIGHT. One day trees have a few buds and then overnight, it seems the entire tree has flowered. Then of course, today, we hit temperatures in the very high 80s.
Yes, he uses a night mask which goes over his nose and up into a "T" strap over the head and under the ears. During the day , he uses a nasal pillow mask.

Pearshoot: Please explain "stacking air for cough assist." Most definitely need info for that...
Ms. Pie: Thanks for all of your good wishes and suggestions.
Caldona: Good suggestion, to use the nasal pillow mask while on the cough assist machine. Will try that tomorrow.
Thanks everyone!

 

[Ms. Pie]

Stacking breaths is when you take a big breath, then while holding that breath take another and another. This gives a cough more strength.

http://journals.lww.com/neurotodayo..._Stacking__Reported_to_Make_Swallowing.5.aspx