Old 08-14-2015, 03:14 PM #1 (permalink)
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Default Clinic visit no breathing test?

Anyone ever had a visit where they dont do the test?
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Old 08-14-2015, 03:37 PM #2 (permalink)
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Default Re: Clinic visit no breathing test?

Cant imagine why they wouldn't. They refused to do mine laying down last time but not upright. Is it possible that your parents aren't telling you something?
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Old 08-14-2015, 04:17 PM #3 (permalink)
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Default Re: Clinic visit no breathing test?

In medicine, one rule is: If you not going to do anything with the results, there's no sense doing the test.

I think the tests in ALS clinic are more useful in educating the staff.
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Old 08-14-2015, 05:35 PM #4 (permalink)
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Default Re: Clinic visit no breathing test?

I've had three clinic visits so far. They gave me breathing tests each time.
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Old 08-14-2015, 05:37 PM #5 (permalink)
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Default Re: Clinic visit no breathing test?

I was there. My dads breathing was labored and they didn't want to exert him. I also know there's nothing else they can do and they visually observed he was worse. Just wondered if this becomes the norm as things progress.
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Old 08-14-2015, 09:08 PM #6 (permalink)
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Default Re: Clinic visit no breathing test?

Steve gets them.at the va. They are optional at clinic . Not a fan of the portable clinic measuring device since it is usually somewhat different than the big machine at the va.
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Old 08-14-2015, 09:13 PM #7 (permalink)
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Default Re: Clinic visit no breathing test?

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Originally Posted by starente15 View Post
Just wondered if this becomes the norm as things progress.
Kind of, yeah.

In the early stages of ALS, I think doctors and technicians want to be very positive and encouraging as they educate the PALS and family. Also, the doctors gain general knowledge about the progress of the disease by running tests on patients at clinic.

But as things progress, the tests become difficult for the PALS, and I think the doctors don't want to put the PALS through the difficulties.
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Old 08-14-2015, 09:54 PM #8 (permalink)
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Default Re: Clinic visit no breathing test?

I agree that if they were observing his laboured breathing they were able to note the decline and know that a test on this visit was not going to give them something they could 'do' about it.

Did they talk to him about his breathing and using his bipap all the time? I would think that simply addressing his breathing by talking about bipap and being honest about what the breathing decline means would have been the most important.
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Old 08-14-2015, 10:41 PM #9 (permalink)
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Default Re: Clinic visit no breathing test?

I have never had a breathing test, and was diagnosed 1.5 years ago. However i have yet to notice any breathing problems.
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Old 08-15-2015, 07:03 PM #10 (permalink)
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Default Re: Clinic visit no breathing test?

I used to receive full up Pulmonary Function Tests (PFTs) about every 6 to 9 months. Those are the ones where you sit in an enclosed booth and receive serious coaching on inhaling and exhaling. I found them absolutely exhausting. It would take a few days to recover from them.

Once my breathing deteriorated to a certain point (FVC of 30%), those stopped. I now get a spirometry test every time I see my pulmonologist.

My pulmonologist believes there is no additional value to be gained by doing the PFT. We already know what it is going to tell. They just wear me out for no reason.

I am glad to have the simple spirometry (more of a screening test) so we can have some quantitative measure of where I am at. I find even those are a challenge, but I recover from them within a few hours.

Steve
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Old 08-16-2015, 08:28 AM #11 (permalink)
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Default Re: Clinic visit no breathing test?

Yes, Tillie. The response was I'm sorry I don't have anything that can help you. They were made aware that the only options are using the bipap more or ventilation. If there was any good news it was that his motor function declined only slightly in three months.
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Old 08-16-2015, 04:50 PM #12 (permalink)
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Default Re: Clinic visit no breathing test?

Star & all,
My memory is, Star, that your dad is not using BiPAP during the day.

So just a note that just not using it during hours that the body needs it is going to accelerate the loss of respiratory function. The muscles have to work harder when they don't have enough to draw on, + don't have support. Would you climb a steep hill in high heels while carrying dumbells?

So the "go do" for anyone who's experiencing a decline and not on BiPAP as often as would be more comfortable, could be to say, "Why not? Is it the mask? Hose length/diameter? The settings? The mode? What needs to be improved?"

And like any machine, of course, BiPAPs need a little maintenance for effectiveness, like changing filters that are dusty/clogged; cleaning/replacing sticky masks; grimy headgear. Even swapping out hoses once a year, even if they look fine.

We now return you to your regularly scheduled programming...
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