Status
Not open for further replies.

Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Laurence's FVC sadly continues to decline. August 95%, November 80, yesterday 62. He has now been referred to a respiratory clinic for an assessment and bi-pap. His neuro said he is a good candidate for bi-pap as he has no bulbar issues.

They checked his 02 and cO2 levels, both are borderline. 02 was 94, and he could not remember co2 but is was slightly out.

He keeps losing weight, another 10 lb in the past 3 months. Neuro seems to think that loss of appetite is related to respiratory issues (L feels full after a few mouthfulls). Anyone else heard this one?

If this pattern of decline continues his FVC will be 40% at the next clinic visit. Peg has not been mentioned. Perhaps we should ask as I know they are problems with peg insertion and low fvc? Is it worth having a peg even though he may not use it - is it easy to keep clean/look after if not in use?

Thanks, Dani
 
Dani, two things. Did they say why not having bulbar issues makes him a better candidate for Bipap? As far as the peg is concerned I would get one now and not use it rather than waiting for his FVC to get much lower. I was told that they don't like to do the operation when it gets much below 60%. They don't take much care, a simple flush with water if you're not using it for feeding.
 
Thanks Barry. I will email the consultant and ask about the peg.

As for bulbar and bipap I assume he was referring to issues of comfort and adjustment to using it rather than the benefits. Dealing with dry throat or the opposite - secretions, caughing, clearing throat etc... presumably can make wearing the mask uncomfortable. I can ask for clarification.

Dani
 
I guess that makes sense as I have all of those issues that you listed. If a person is able to close their mouth it would be much easier to use the nose type mask and avoid a lot of them . My bipap pumps a lot of air into my stomach too which wouldn't happen as much if my mouth was closed and I was nose breathing.

Good luck and sorry about the progression. ALS sucks!
 
Dani,
My FVC is falling too. I was 80 in October and in January I was 52. I was sent to a pulmonologist for the bi pap and for a cough assist machine. They also talked to me about getting a feeding tube installed soon - before I drop below 50. So I expect that to happen fairly soon.
No one has mentioned that lack of appetite could accompany the respiratory issues but I have to say I have been feeling full very fast and almost have to force myself to stay at the table and eat some more. I will continue to watch this - I guess it makes sense that it could be affected.
I would definately ask about the feeding tube - better to have it and not need it than not be able to get one.
Good Luck :p
 
Dani,
I think that could absolutely be a related issue in eating. I have had the same problem, and I do know that this is something that can happen. Hoping things stabilize, but do agree to think about the peg, and have it before it is needed.
 
Hello,
In regards to bi-pap and bulbar: Because the throat, diaphram is affected w/bulbar, using a bi-pap isn't always an option. In my husbands case, the cough assist won't work because that sudden burst of air actually causes his throat to spasm shut. He can't get the cough stacking needed to produce enough to cough up phlegm. Consequently, not enough air gets into his lungs to produce a cough. We are going to try a bi-pap but his doc isn't giving us much hope for any success.
 
Maybe it is time to start having him eat high calorie meals, if he isnt already.
Or if he cant stomach a whole lot, he could drink some Ensure or something along those lines.
Sorry about the change in his FVC- sucks. I agree with the others. Its better to get the peg now before there is much more progression. If he wants to use it, its there. If not, then he doesnt have to. As others have mentioned on other threads, you can use the peg for nourishment and calories and once the bulbar issues start up (if they havent already), then he can just stick to eating his favorites and not use up all of his energy on just eating.
Hope you guys get it all worked out.
 
Hi Dani, around the time my pals got her bipap she was also experiencing loss of appetite & a feeling of fullness on very small amounts. We didn't think of respiratory issues being the cause but who knows. What was suggested was that food was passing through her system more slowly, too slowly in fact. This made sense to us as there'd also been a change in the regularity of bowel movements. We now use a popular over the counter medication to help digestion along. Her appetite is still not huge but she does now feel hungry & know when she needs something.

Sorry to hear about Laurences fvc Dani. Thinking of you.
 
For those with more advanced bulbar symptoms who are not using peg... Ensure makes pudding. We couldn't always find it at the store but ordered it online. He could handle it pretty easily and we could even put small pills in a spoonful and he could swallow them.
 
I bought chocolate Boost pudding by the case when I could still eat it. Good stuff with lots of calories in a small package.
 
Last edited:
Barry do you use a chin strap to help keep your mouth closed while using the bi-pap...or is it to difficult with the saliva build up? I know Andrew had to use a chin strap for a long time..some how he now keeps his mouth closed at night. THinking of you always.
 
Kelly, I don't have a chin strap but could use one. Even when I close my jaw my lips dont come together so I breathe through my mouth anyway but at least it would be only 1/2 inch open not wide open. I need to email my RT and ask. Thanks for thinking of me :):)
 
Barry- no RT needed. One can easily be made! Ray uses one every night so he doesnt bite his tongue.
We just sewed some velcro onto shelf liner. Not the paper kind, but the puffier, non-slip kind.
we put a paper towel under his chin and over his ears and then the strap over top and velcro it on top of his head.
BUT- then someone has to be around to take it off so you can suction yourself in a hurry if need be.
 
We are looking into supplements such as shakes. Have an appt with a dietician. Laurence was never a big eater, always quite skinny, but I am aware of the importance of keeping the weight up. Thanks everyone. D
 
Status
Not open for further replies.
Back
Top