Pulmonologist Visit

[Miss]

We went to the pulmonologist on Friday, and THANK HEAVENS ! ! ! The ALS clinic was wrong about the decline in my husband's expected capacity. It did not drop from 125% to 41% in 3.5 months, it only went down to 80%. Much, much better. The doctor suggested that the Cpap machine is working just fine for now, and that we will revisit the Bipap machine in 3 months or if his capacity drops significantly in the meantime.

 

[CCMominVA]

That's great news Miss!

 

[Phil's wife]

That is really great news! We are off to the GI doctor today...we will see when he suggests the PEG.

 

[Miss]

Good Luck at the GI! Are you having a swallow test? I think we will be doing that when we are there.

 

[djgators1]

Glad for your news Miss.

 

[JeffP]

thats exellent news i love to hear good outcomes then the sad ones good for your husband and you

 

[halfin]

That's great news on his breathing. Sometimes those tests aren't that reliable, a lot of things can throw them off. Not feeling well, having congestion, or even a poor mouth seal on the tube can make a difference.

I am getting a swallow test tomorrow, been choking more lately. Had one in October and it wasn't too bad then, but my pulmonologist thought it was time for another.

 

[luvnmm]

Good Morning Miss!

What wonderful news! I am so glad that the breathing had not declined as much as you had been previously told. I can only imagine the relief you both must be feeling. My mom has been using a bi-pap for several months along with additional oxygen and finds it much easier to sleep at night. To my knowledge, she has not had to use it during the day as of yet.
I wish you both the very best. Keep us posted on how the swallow test goes.

Take care and have a blessed day!

 

[pmbenb83]

Yayyy! Very good news! I just love to hear good news! I'm so glad to hear that his breathing is much better than the docs thought.

Take care.

 

[irismarie]

MAKES ME FEEL CROSS these people who give bad reasults and frighten the life out of you! Glad they were wrong, though

 

[JeffP]

hi miss i had the same problem with the brething test one hospital said its still aroud 50 percent but told me 2 months ago it was 70 percent i was stunned .i went to have another test done and it came up over 80 percent and improving like halfin said there are many reasons those test arent exactly correct the mask is to loose ect.but im glad you got better news

 

[JeffP]

well went back for another lung function test my fvc is now 73 percent .my nurologist wants me to use a bipap when i sleep .i sleep fine atleast 8 hrs a day .feel very energetic most of the days so is this really nessecary im asking .well any input wopuld help thanks jeff

 

[CRF8]

yes, start using it now to get used to it if nothing else. They say it rests the diaphragm

 

[Miss]

If the bipap rests the diaphram, does the cpap overwork it?

 

[sadiemae]

Good question. I know CPap is not recommended for PALS. HUGS Lori