I need advice about pulmonologist appt.

[TGB1]

Hi All, My mom - 86 years old and bulbar onset - is having her first appt. with the pulmonologist next week. She can't speak and has a peg, but is still strong and walking around with a wheeled walker. She occasionally uses the suction machine, not sure that the need is great for that right now, but I wanted to have it for if/when she does need it. The reason for the appt. is of course to have her evaluated for the bipap and cough assist. Again not sure of the need right now but want to have them in the house if I can. What should I expect to happen at this appt. and what should I ask? Could someone also please explain the FVC levels and what this means? I know that at her initial appt. the neurologist tried to get her to breathe into a tube but she had trouble wrapping her lips around it. I appreciate any and all info. Thanks, Trina

 

[Nighthawk]

Hello,

FVC - Forced Vital Capacity - after the patient has taken in the deepest possible breath by mouth, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired. FVC is usually expressed in units called liters.

FVC values are "normal" when they are greater than 80%.

Hence, "Abnormal" values would be anything below 80%.

For example:

"Mild"----> 70-79%
"Moderate"----> 60-69%
"Severe"------->Less than 60%.

These last three set of values mean that the lungs are somewhat restricted from filling to their normal capacity of air.

If they find her FVC is <60% they surely will suggest Bi-PAP for her.


Although, sometimes FVC values can be misleading because ALS Patients with Bulbar-onset (like myself) can't seal well enough the mouthpiece they use for the FVC test because of weakness in the muscles that control the lips and there is some leakage when blowing air from the lungs into the mouthpiece.


Hope this helps.


Carlos

 

[malcolm b]

Good job, Carlos. i would only add that the percentages shown are based on height, weight, and age. From a computerized data bank of what normal people do relative to height, weight, and age. 60% means relative to what a healthy average person of your height, weight, and age would be expected to do. Not a precise measure, for we differ in lung size and musculature--normal variations. But at least we have some standard.
malcolm b

 

[Nighthawk]

@malcolm:

Yes, I know. Thanks for bringing it up, though.

 

[ECpara]

TGB1, for folks with bulbar onset, a special mouthpiece is used that seals around the mouth. I don't know what it's called; it is soft plastic, full of air, and seals comfortably all around the mouth so the patient doesn't have to physically seal the mouthpiece with his already weak mouth. If it wasn't for this mouthpiece my husband would be unable to be tested. You should request this for your mother next time. I'm surprised her pulmonologist didn't automatically use one on her.

 

[shelleynshaggy]

Insist on going back with her for the actual testing. When we go they always try to get me to stay in the waiting room - I just say "no" and come back with my HB. Only got resistance once - and I answered "trust me it will be easier for both of you if I am with him" (Jim gets anxious if I am not there.) Now they don't even question me

 

[BrianD]

I will throw out another thought on these tests. Since the results are used to justify the use of the bipap, this is a case where you may not want to do your absolute best efforts. Medicare won't cover if the FVC is greater than 50%. I've seen cases where the best efforts test was above 50,but then normal breathing was insufficient at night. There isn't any prize for high scores. :smile:

 

[Nighthawk]

@BrianD:

Medicare definitely stinks and sucks.

And, it's not only for approving things strictly necessary such as a Bi-PAP but even for approving the funds for a P.W.C.
For the latter, you've got to be completely crippled (not having any form of mobility at all by using your legs) or they wouldn't approve the funds to purchase one.
They even send you to see a P.T. and O.T. to evaluate if you still can walk even if you have to put up a very big effort to take just one step.

Go figure.