First visit to a Pulmonologist in a few days

[Doing My Best]

Thanks for the responses. The only adjustment I’m aware of is the three levels of heating, or no heat. Does any humidification happen if the air is directed through the humidifier with no heat on? That’s what we’ve been doing lately and it seems to be ok. Still wakes with dry mouth but not desperately dry (at least lately). I turn the heat on during naps because the moisture buildup isn’t excessive over two or three hours as it is when it’s on all night. Is this something the respiratory therapist can fine-tune in some other way?

 

[Tomswife]

We saw the pulmonologist. He ordered these tests: SNIFF. MEP, MIP, AND SPIRO.
ALSO ORDERED ABG BLOOD TEST FOR HYPERCAPNIA.
We have to go to the local hospital so that all the tests can be done at one location.
The abg blood test is done from an artery. So it has to be done by an experienced phlebotomist.

 

[KimT]

I get an ABG every year. The key is relaxing. Mine has never hurt.

 

[Tomswife]

I am concerned about the ABG. Tom is weak. Too much? All these tests together?
Do ABG last or not at all?

 

[Nikki J]

The ABG itself is passive. The only thing would be if you have to go elsewhere from the pft area it would be more time ( and effort for you). In some places it is the respiratory therapists who do ABGs as well as PFTs. Have you been given an appointment and information of where to go yet?

 

[Tomswife]

We don't have appt but everything will be done at pulmonary dept at st barnabas hospital.

 

[lgelb]

Hi, DMB, sounds like you have a more basic humidifier than I was envisioning you might. There is some humidification with the heat off, though of course not as much. But as you have found, there are times when you want more humidification and times when you want less -- there is no therapeutic advantage either way as long as he's comfortable. Certainly you can use a dry throat spray/nasal ointment to help the adjustment.

 

[affected]

The ABG will give you important information on what is happening with his CO2 buildup.
Glad you are getting all this sorted as his breathing is going to impact his QOL the most, as well as how long he has with that quality.

 

[MupstateNY]

Tomswife, I don't know anything about those tests, unfortunately. However, I'd like to share a tip. I've learned over the years (the hard way) to ask the provider to make me a flow chart, showing what the action step will be if Test A turns out to be in a certain range, then Test B, etc. I do not like to have unnecessary tests.

The pulm. NP I saw recently at Guthrie said, "You're going to need these pieces of equipment eventually, so I'm going to go ahead and order them."

I worry about Tom's stamina with such a big list of tests.

 

[affected]

It is not really that big a list of tests and all show a different part of the breathing story. With ALS, the breathing is key.

 

[Mary2]

My PALS was losing weight and was short of breath. He received a couple of tests from an RT at the clinic. The results weren't normal and he was placed on bi-pap. I knew the tests at the time. I don't remember them now. I think he was tested once by the RT that comes to the house and that has been it.

We have our choice of primary settings and secondary settings on the trilogy. I haven't even bothered to learn the difference between the two settings. Just whatever setting he feels comfortable on. The RT tells me that the settings will remain as they are. If PALS becomes uncomfortable I plan to ask Laurie to look at the settings and see what she says. And then I will discuss with the RT at that time.

We are encouraged to use the cough assist as a preventative measure to keep the lungs clear. We have been getting better at doing this. The cough assist does help clear the lungs.

 

[Tomswife]

Mary. I am concerned about Tom having this big day at the hospital. I will look into RT home visit. Perhaps that might be a good first step.
The good news is that his lungs sounded clear.

 

[lgelb]

Second that Tom's tests shouldn't take long -- a few minutes -- whether in a clinic or hospital, or at home.

Clear lungs are good!

 

[Mary2]

Have you looked those tests up? I think their simple tests. Inspiratory pressure, Expiratory pressure, spirometer guessing by the letters. Having these tests might help your PALS get the bipap. Once he has the bi-pap maybe you could see the pulmonologist less and work with an at home RT.

 

[Mary2]

Your probably going to need the pulmonologist to write the referral and order for home RT. The neurologist could do it, but the division of labor in your area might mean it is something the pulmonologist usually does.