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Lscott71

Active member
Joined
Aug 22, 2017
Messages
57
Reason
CALS
Diagnosis
05/2017
Country
US
State
Texas
City
Fort Worth
Hello, my PALS was diagnosed in May and today had his 2nd ALS clinic visit at Texas Neurology. I’m just not understanding the respiratory numbers.

His first visit in July the respiratory therapist said his MIP was -30 and MEP was 93. Today she said he was at -11 for MIP and 48 for MEP. No one really explained this, and when I asked the doctor about it he didn’t seem very worried. They did seem kind of shocked that his readings on the pulse/ox I’ve been checking here and there will run in the low 70’s. He does use the biPAP all night and since I noticed the low oxygen levels I’ve been making him use it several times a day also.

He breathes pretty fast and shallow and gets winded just brushing his teeth.

They said he needs a cough assist and a suction machine, but we have to get it through the VA and they canceled our appointment we had with them two weeks ago (someone he was seeing there got the flu). Of course, it’s like pulling teeth trying to get rescheduled!

Sorry this is so long! Thank you in advance for any information!

Luanne
 
If his pulse ox is in the 70's he should be on that BiPAP 24/7, as I am.
You might also inquire about supplemental oxygen at night also. I use 2 liters at night.
 
Yes, I’ve really been trying to keep him on it. Not sure how all that works when you have to go out somewhere? He still walks very well, just gets fatigued easily. He’s not in any kind of PWC. I know I saw some people at clinic who had theirs hooked on the the chair.
 
Luanne, I can understand why they skipped past the MIP and MEP (which have worsened a lot, as you say) because the oxygen level is so low -- I assume they checked his pulse ox also? What was it in the office? Did you check your machine against theirs?

I suspect his BiPAP settings could use some tweaking, and can help you here, or definitely get a pulmonologist on the case, but did/does he have lung or heart disease apart from ALS? Obesity? Smoking? Asthma? Do you know how to read his settings, and the data on the machine while he is using it?

Also, this may seem elementary, but have the mask, filters and hose all been checked out lately?

As Greg said, he may need oxygen, but the idea of being in the 70s a lot is pretty serious, so I'd be looking for abnormalities in the machine or system first.

Best,
Laurie
 
They didn’t check his oxygen level. Most of the time he runs in the low 90’s, and with the bipap he stays at 97-98. The settings on his bipap are 8 over 4. I think she said that’s the lowest setting.
 
Oh, also no issues besides the ALS. No heart disease or lung problems.

I’m glad he actually sees the need to wear it. He fought me on it for quite a while.
 
Your clinic should have a va liason. If not, email your va doctor. A pwc is automatic now if you are using va services and seeing va doctors. There are many benefits including compensation. Please view the veterans section to make sure you are using all your tools.
 
Your clinic should have a va liason. If not, email your va doctor. A pwc is automatic now if you are using va services and seeing va doctors. There are many benefits including compensation. Please view the veterans section to make sure you are using all your tools.

Yes, we got rolling with the VA almost immediately after diagnosis. He was supposed to have his first ALS clinic appointment two weeks ago, but the woman he was seeing got the flu so they have to reschedule him.
 
They didn’t check his oxygen level. Most of the time he runs in the low 90’s, and with the bipap he stays at 97-98. The settings on his bipap are 8 over 4. I think she said that’s the lowest setting.

??

So this "70" is a typo?

"They did seem kind of shocked that his readings on the pulse/ox I’ve been checking here and there will run in the low 70’s."
 
??

So this "70" is a typo?

"They did seem kind of shocked that his readings on the pulse/ox I’ve been checking here and there will run in the low 70’s."

No, but he's only run that low twice. Once after we walked around the block and the other day he came out of the bedroom saying he felt very weird. That usually means he feels very lightheaded and dizzy, so I checked him then and it was 71.

Otherwise, he's been pretty steady in the low 90's, but with the bipap it goes up to 97-98.
 
Have you tried it on the fingers of his other hand when it's that low? I'm just not seeing someone with 02 in the low 70s as being able to walk.
 
Have you tried it on the fingers of his other hand when it's that low? I'm just not seeing someone with 02 in the low 70s as being able to walk.

That’s what I thought. Hoping it was just a glitch.
 
lscott71, We live in the Dallas/ Fort Worth area and went to Texas Neurology before they put Steve on Hospice. Who's your Doctor? Have you been to their clinic yet? As far as the bi-pap, they were never very helpful and the settings they ordered actually made Steve worse. Laurie on here, helped us and now our hospice RT monitors it for him and is wonderful. His readings were rapidly declining with the old settings but since hospice they have not been declining or at least not as much.
 
Luanne, what kind of BiPAP do you have, that is set at 8/4? What's your PALS' height and weight?
 
lscott71, We live in the Dallas/ Fort Worth area and went to Texas Neurology before they put Steve on Hospice. Who's your Doctor? Have you been to their clinic yet? As far as the bi-pap, they were never very helpful and the settings they ordered actually made Steve worse. Laurie on here, helped us and now our hospice RT monitors it for him and is wonderful. His readings were rapidly declining with the old settings but since hospice they have not been declining or at least not as much.

We see Dr. Heitzman over there. We’ve been to two of their clinics over there so far. Our next one is in January.

They’ve got him on the lowest settings possible with the bipap.
 
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