First visit to a Pulmonologist in a few days

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Honestly these are not long complex tests, but are invaluable.
I recommend you just get the date and go get this done and get Tom onto bipap. I'm sorry you are getting stressed in advance, try to see it as the best way to help Tom now.
Tom is very weak. Going to the pulmonologist was very stressful. And these trips are not quick. Hospital is only 15 mins away. But wheelchair van arrival, ride, office visit. Back in the van, etc. I will talk to pulmonologist office.
Thanks to all. You are wonderful.
I warned you I didn't know what I was talking about! Thanks to the the knowledgeable folks, who pointed out that the list really isn't as overwhelming as I thought.

Tomswife, have you thought about getting a palliative care provider involved in your new team? My primary explained to me recently that I can start that as soon as I want. It's not like Hospice, which is just focused on the last 6 months. Apparently it's more about finding a path through the challenges, that fits the individual. I think. (I haven't been yet!)

I was thinking recently that in ALS we get the indignities of old age concentrated into a more compact time period.

Tom's and your experience reminds me so much of my galloping labor after being induced (because the baby was two weeks late and wasn't growing any more). I could never get my rhythm because the contractions were back to back. All the timing was off. I told them I couldn't handle it and would need an epidural soon. But they waited so long to call the resident, that I was in too much pain to hold still long enough. He was afraid of leaving me paralyzed for life. But for a long time, no one in the room had the gumption to say, "M, this isn't going to work, we missed the boat on the epidural, so you don't have to keep lying here on your side, trying in vain to hold still." (Which was its own kind of torture.)

I have some exciting news. I was approved for the BiPap without having to do a sleep study after all, and it's being delivered and taught to us tomorrow. And Guthrie approved my RIG and I'm going to have it in two days! Guthrie is amazingly speedy.
Great news re the bipap. Here they make PALS do a sleep study which is absurd as they don't have full hospital bed, hoist etc
We have the appointment for feb 10. One of the tests is not done at pulmonary, it is radiology in a different building. I think the sniff. So. I have not scheduled that one.
Tell the pulmonologist about not being able to do the sniff test if you have not already done so . See if there is something that can be done in the respiratory lab. I was in a study where they did a non radiology test that was designed to monitor the same thing. I don’t remember the details and it may well have been something they invented for the study. However at least make sure there isn’t another measure he wants.
it seems like getting the breathing taken care of is so important you don’t want anything to go wrong
Not sure where to post this, tomswife, but my recent experience with two strong men helping me (no Hoyer lift yet) after RIG makes me think that maybe it's not safe for either you or Tom for you to caregive alone, given the size difference, your age, Tom's difficulties with communication, and your unhealed rotator cuff. For example, it takes two people to turn a PALS, and use a draw sheet, doesn't it? I wonder if you could have some burly students there with you guys, on a schedule. They could study most of the time, but help when needed. When my mother was in need of 24/7 care, I had full coverage of caregivers, and they always asked me to help with the turning.

As usual, I don't know what I'm talking about -- these are just my intuitive thoughts after a lot of mayhem and pain at my house yesterday and today.
Mayo and University of Florida didn't have me do the sniff test. I have a piece of home equipment that does it. Nobody ever asked for my numbers or even suggested I try it.

My local pulmonologist does sleep studies at the patient's home, especially if they are disabled. I can really see the value in them as some patients have central sleep apnea or other issues not identified on the PFT.

However, I don't see why there would be a holdup if Tom's FVC and breathing muscle strength were all below normal. I would think the pulmonologist would get the ball rolling no matter what.

Also, once you get the device, you should be assigned a RT to make house calls and help you with adjustments. Your pulmonologist and the company providing the equipment should take care of it.

The people doing Tom's test will take into account his weakness and will be gentle, I'm sure. If Tom gets too tired, they may even do a limited test. Mayo put me through a one-hour test but I was physically able to walk on a treadmill for five minutes. University of Florida's complete test took about 20 minutes and gave us enough information to determine everything I needed and get a baseline.

Please don't worry. They will only do what they think Tom can handle but they should do whatever is necessary to make sure his settings are correct.
Do the PFT test results impact what the settings on the machine will be? We never had them done. I am not even sure if the neurologist ordered the settings or if the RT just used his knowledge and experience. I would think there would be a limited range of what is acceptable for each setting and that if you adjust one setting you would want to make sure it is in synch with the other settings.
No, the PFTs do not bear on settings. Nor does Medicare require a sleep study for BiPAP in ALS. It is based on MIP (<60cm) and FVC (<50% of predicted) (one or the other must pass the threshold). Other measures such as SVC and SNIP are widely used for a fuller clinical picture but Medicare does not adjust its reimbursement criteria so quickly. However, a LMN can be submitted toward a coverage determination when the normal parameters do not line up.

There is indeed an "order" for adjusting the settings based on what the problems are (too much/little air at the beginning, middle of the breath, on exhalation, forced to breathe too fast/slow, etc.)

No RT is going to have the "experience" that you two have, on what the settings should be. They are generally set too high and often "not synched" to the person's natural breathing, from the jump. It is the difference between setting cruise control and watching the traffic in front of you. And that natural breathing changes as progression occurs.

Always happy to help adjust.
Re sniff. I will call hospital radiology tomorrow Monday to see if i can get a 10am appt b4 the 11am pulmonary. If not i may postpone to see if it is essential. But... neurologist said to do it. Just concerned cause tom is weak.

Mupstateny. With excessive experience i have actually gotten very good with the lift. My son in law built a pulley system to pull PALS forward so i can get the sling all the way down his back.
Tom is only lifted in hoyer and put back via hoyer. No other body movements. If he needs adjusting in bed... hoyer....up and back down.
I think your son in law is brilliant!
SNIP is just another way to measure inspiratory strength. It's quick and easy. It might be more accurate for those who cannot form a seal on the mouthpiece for inspiratory strength. It's very quick. You just put a small piece in your nose and inhale hard. It won't work if you have nasal congestion. Here is my home unit. Don't be worried about it.

I was given an order for a Trilogy by my neurologist. I couldn't finish a sleep test with or without the Bipap. My numbers were significantly higher than required to qualify, yet no questions were asked. I never saw the doctor's order so I have no idea how he justified my need for Bipap except my PFT had a restrictive pattern. My inspiratory strength continues to be well over 100%. I think I just have a very unusual respiratory system.
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It is surprising how much we can do once we learn how to use the right equipment well, for the right task.
Wow, Tomswife.

I guess I was totally unprepared for how hard this RIG would hit me. It's been scary -- given me a taste of what life will be like for me every day, a little farther down the line.

Can someone explain to me step by step how the tests will guide management?
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