First visit to a Pulmonologist in a few days

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Senior member
Aug 22, 2022
Lost a loved one
Tom PALS will go out to see a Pulmonologist in a few days. He was last seen by an RT at our clinic meeting in November. No therapy recommended.
We did attend the Breathing webinar last weekend.
Does anyone have advice on how to get the most out of this first visit, other than kidnapping the doctor and bringing him home with us. :)
PALS breathing is ok. Oxygen tends to be 93, 92. No issues yet with secretions or too much mucous. I think Nuedexta is helping with that. We had unintentionally gone off Nuedexta (clinic did not call in RX) and PALS had terrible mucous.
Has Tom had a complete pulmonary function test? My 02 is around 95 when lying flat but jumps up to 98 when moving or even sitting up. That's been my normal since 2014. Co2 is usually the issue with PALS. It means that they have a hard time breathing out and that's why BiPap helps.

Both Mayo and University of Florida gave me a comprehensive breathing test. Both doctors, even back then, said they were more concerned with SVC, MVV, and breathing muscle strength (MIP, MEP.). Usually local pulmonologists look for FVC (which is also a good marker) and a restrictive pattern. My care team at Mayo also asks for arterial blood gas yearly since I'm progressing slowly and my breathing numbers are atypical (good muscle strength, good MVV (the amount of air you can move in and out in 12 seconds) but lower than normal FVC and low lung volume.

I know all the new information can be overwhelming but just stay until all your questions are answered.
I did send the RT report from the clinic (done on Nov) to the new pulmonologist. The pulmonologist will do his own testing. But your feedback is helpful.
I would definitely make a list of any questions and print it out. Try to make it concise. I usually do this and my neurologist will check off each one as she addresses them.

I would also consider writing out and printing what you want to say - either the main points or a straight out narrative. I have done this a couple of times. Once I was very emotional and was going to cry if I said what I wanted. Another time it was a fairly complicated issue I wanted to present and I knew it would be easier for the doctor to skim plus nothing would get left out.

i know Tom has positional issues. Not sure but might a video help so the doctor can see what happens?
The pulmonologist visit is in person. I would say his breathing is shallow but he is not struggling. I will ask the dr to do the tests with him reclined, since he struggles to breathe reclined.
Thanks Nikki.
I find lists so helpful as an appointment can go off in directions and I forget things I really wanted to ask about.
My good pulm. (not the bad, helpless one) told me I would need certain things sooner or later, so she went ahead and ordered them so I'd be one step ahead of the game:
  • nebulizer (to get more bang from the buck from the albuterol which I use as needed)
  • BIPAP or Trilogy for nighttime (I wake up tired)
  • cough assist (I already have suction device)
  • hammering vest
Also she increased my over the counter non-extended release Guaifenesin (very helpful for liquefying mucus)
Mupstateny. I will have to research these things. All new to me. Thanks.
Kathy, the Trilogy is just Respironics' portable BiPAP. I advise anyone with a choice to select ResMed's Astral instead.

The Cough Assist and Vest are not right for all PALS, nor do most PALS need albuterol/a nebulizer for it. Especially for anyone with cardiovascular issues, and/or an unusual onset such as Tom's, any proposed use of such meds should be discussed in depth.

Equally in Tom's case, there should be a "burden of proof" and a very low-settings start to any new equipment. Though I am sure the pulmonologist will agree that he needs a BiPAP, that would be a start low/go slow proposition anyway.
Every PALS is different. I was given a cough assist and I use it in reverse to expand my lungs. I didn't need the device but my pulmonologist ordered it and Medicare paid for it. I find it useful, FOR ME, and showed what I was doing to both my RT and my pulmonologist and they agreed. It actually increased my total lung capacity by a bit. But, again, using it for that purpose is not for most.

Like Laurie said, some PALS cannot tolerate medicines that are bronchodilators. They can cause arrhythmia. I'm one who cannot even drink a cup of coffee without getting palpitations.
I only need the Albuterol because sometimes I get a weird cough going on that doesn't let me breathe.

The interesting thing is that wonderful new pulm. knew what she wanted to order for me, and gave me her reasoning.

Hopefully at this point you can start to relax. I will say that after a period of hypervigilance (because it was needed), it can be hard to relax and convince oneself that the hypervigilance is no longer needed. (I went through that with my younger son, who had a rough time in school due to staff exacerbating his Tourette Syndrome and OCD.)
Early on my pulmonologist ordered the cough assist, trilogy and a hammering vest. I found the cough assist not beneficial since I could cough up secretions. The trilogy replaced my cpap being I was diagnosed with sleep apnea a few years before my als diagnosis. I found the vest was useless but that was for me it may be beneficial for you. I was getting Radicava infusions at the time I was using the vest. I would use the vest in the morning before my infusions, I would have a problem of getting blood return after my port was accessed once I stopped using the vest my port worked fine. Not sure if the vest was somehow affecting the positioning of the port or not and if it was a coincidence that I had no issues with my port once I stopped using it.
Hi Tomswife, my PALS uses a ResMed Astral 150. It took several weeks if not a few months for him to fully adjust to it but now he wants it on all night and any time he's napping. The settings had to be adjusted down after the first several weeks because the level of pressure was making Steve uncomfortable and didn't seem to sync with his natural breathing rhythm, it kind of overrode it. Once that adjustment was made he wanted to wear it more.

See if you can get several different types of masks delivered at the same time as the machine so you can try them out. We went through 4 or 5 styles before landing on one that is completely comfortable and effective.

Steve has no excess saliva and tends to get a very dry mouth, because he can't exhale through his nose due to muscle weakness in his soft palate which causes it to collapse - so he breathes only through his mouth and it gets extremely dry. There is a humidifier attached to the Astral but that's been a mixed blessing because sometimes he wakes up with the inside of the mask soaked from the excess humidity. I'm still looking for some guidance on whether there are better ways to use the humidifier (heat on, heat off, only part of the time?) or if we just have to accept that he will always be either too dry or too wet.

He sleeps through the night much better since using the bipap consistently. Hope you get good results if that's what your pulmonologist recommends.
Sometimes the humidifier has to be adjusted. California, even San Diego, is dryer than Florida. My friend uses BiPap but adjusts the humidity up and down depending on the internal humidity level and how he feels he is breathing at the time. He had a bad cold and had to turn it off for a few nights. With PALS, it is more difficult because breathing is everything.
The Astral has a good humidifier but you will have to experiment for the best settings. Usually you will want the heat on at least the lowest setting. I would leave the humidifier on, though, not use it part-time, especially for a mouth breather, since it is acting as his nose.

The room temp and humidity also play a role, so you may need to tinker with those as well.
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