long intro, with questions

[timrous beastie]

update to the update, frustration exponentially aggravated (!!!)

my love just called the number provided by the med asst at his pulmonary care facility. it landed him on a phone tree that had NO options related to pulmonary. he then called the med asst back and she got it scheduled for him on "earliest available date" -- MAY 10th.

she also told him s/t like "just let us know if you decide to go get it done elsewhere", with zero advice on how / where we might do that.

aaaaaaarrrrrggggghhhh.

 

[Nikki J]

I would call the neurologist who diagnosed him. Did they do any respiratory testing at that clinic? Mine always does svc and someone should test him sitting and lying if it hasn’t already happened. I don’t have bipap but my sister got hers ordered from neurology

 

[KimT]

When I decide to get my ABG tested, I get an Rx from my GP or pain management doctor and go to the local hospital. You can call whatever place you're getting the ABG and ask for the pulmonary lab. If there isn't a key for that location, ask to speak to a person.

Things shouldn't be this hard, yet they are.

My housemate's CPap got recalled and the new one has issues. They also aren't sending supplies (paid by Medicare and his supplement) automatically like they used to. He has to call them and there's a wait.

I think it's a problem everywhere with office staff dropping the ball. The only place I've never had an issue is with Mayo Clinic. You always talk to a person who stays on the line until you're connected with the correct department or doctor.

One university neuromuscular department, where the doctor did my first lumbar puncture, lost the fluid. How does that even happen? It did so I had to go through it again.

I'm sorry you're going through all that while having to work and take care of a loved one.

 

[lgelb]

Buying a starter BiPAP for cash does not affect RAD reimbursement. All you need is an rx. That can come from a PA, NP, dentist, PCP...you get the idea. Since it's cash, it doesn't matter what the dx is anyway. The provider taking cash doesn't care.

Changing your own settings does not affect RAD reimbursement.

Establishing that COPD does not contribute goes along with the ALS dx. You don't have to keep proving anything. RAD reimbursement is based on the dx and FVC and/or MIP, period.

Never let any pulmo or RT tell you that you have to use starter settings or any other settings for life. That's like saying you have to keep driving at the same speed you used on the on-ramp. Every PALS deserves machine settings based on the moment, not the rear view.

 

[timrous beastie]

Thank you Nikki, Kim, and Laurie.

I still have some confusion about the fine-print in that ResMed PDF re: the supposed pre-reqs for getting Medicare to eventually cover an EO471 device, BUT... we've been scheduled for ALS Clinic day (today!) at Neuro #1. Although i dunno yet if they can/will do the ABG test there-- or will even consider it pertinent-- I'm confident this visit will help us cut through the delay on getting BiPAP started. Sweetie got the invite to attend clinic just yesterday, when he called to check on part of the referral process for second opinion at ALS Neuro #2.

Re: 2nd opinion: As I mentioned on previous page, the map link showed 3 locations in our general vicinity, and by mere happenstance our Neuro #1 dx was at one of the three. Of the other two, the phone number on the map listing for one of them was incorrect. (To whom should I send correction?) My google research on that facility left me unimpressed. Info was pretty skimpy, beyond folks complaining about how difficult it was to get calls returned, get scheduled, etc.

The remaining facility is associated with a major university. We filled out an online appointment request form Tuesday night, 04/09, and rec'd reply email on Wednesday morning, 04/10, specifying need for physician referral and medical records. Neuro #1 acted promptly on our patient portal request for the referral, and his medical assistant confirmed on Thursday, 04/11, that she had already sent their medical records, so no action needed from us on that. (I will, though, continue work on gathering and organizing any prior records as supplement to those from Neuro #1.)

I'm still working my way through Laurie's (hugely helpful!) resource on "Second opinions and first clinic visits". I expect this first clinic day will be a bit of an overwhelm, even if I'd had more lead time to prepare. My main goals for the day: General orientation, BiPAP situation getting resolved, and info about obtaining our own copies of results from ALL tests done to date and moving forward.

Leaving soon, so I'm off to dress and pack up notes. With MUCH appreciation for you all.

 

[lgelb]

It is MIP and/or FVC not an ABG that qualifies a PALS for portable NIV. Please send me the phone correction bc I maintain the map.

 

[timrous beastie]

- 1st ALS Clinic attended (04.12.2024)
- new Drive Rollator obtained, at clinic, courtesy of ALS Foundation
- also at 1st clinic: orders written for bipap, PT (sweetie's neck pain), and riluzole *
- 2nd opinion scheduled (05.13.2024)
- RT home visit for bipap set-up scheduled (04.19.2024)
- map correction sent to Laurie

* i am thinking we should not start the med until we get bipap set up and dialed in, so as to better differentiate between any adverse effects. thoughts on that?

also, when the RRT-NPS called today to schedule set up, i asked about the equipment. he said will be either Respironics Trilogy EVO or Breas Vivo 45LS. when i asked about Phillips reputation and recalls on the Trilogy, he said the issues had all been handled. MY poking around on the 'Net makes me wonder otherwise. otoh, i haven't found much of anything here about folks using the Breas equipment. ???

can i text him back before Friday to specify a preference? and if so... advice on which?

atop the head-spin of being new to this Dx, a dear friend (unhealthy, but not PALS) had a medical crisis during a video telehealth visit yesterday morning... 45 minutes after the NP reached me as her emergency contact, friend passed away as paramedics were loading her for hospital transport. to quote myself from many a recent convo IRL, involving numerous folks having major health or other problems land on them hard ...

i am getting really tired of the Universe handing out sh*t sandwiches at this picnic.

 

[swalker]

I was initially offered a Trilogy. I asked about the Resmed Astral 150 instead. They were a bit uncomfortable about it because all their RTs knew the Trilogy. Once I persisted a bit, it was no problem getting the Astral 150.

Steve

 

[lgelb]

So sorry about your friend. None of us is promised tomorrow, that's for sure.

No conflict between BiPAP and meds -- start what you get when you get it.

I would not accept any Respironics machine. Many of the recalled/ "fixed" machines had new issues. The DME may mean the serial number isn't on a current list, but that proves nothing since they are way behind in figuring it all out and now under an FDA hold where it's all about hanging onto market cap. If they stock Breas but not ResMed, I'd insist on Breas.

 

[timrous beastie]

thanks, Steve. thanks, Laurie.

i reached out to the RRT via text on Thursday AM and expressed our desire to steer clear of Respironics. his reply indicated that was fine but we would have to postpone the Friday (04/19) set up so they could locate and ship Breas unit from one of their other warehouses in the region.

meanwhile, i contacted the (non-ALS) pulmonary care clinic to update the PC-A there about having attended the ALS clinic last week, and getting bipap order that was already being processed thru their DME vendor. i also belatedly let them know that my love had completed and returned the noc ox test that had been ordered prior to the ALS dx. (the kit arrived the afternoon that we returned from ALS clinic, so we went ahead and did it.)

when the RRT called back to say they had found a unit that was getting prepped and would ship Thurs or Friday, and that our set up would be "sometime next week", i reached back out to the original pulmonary care clinic to inquire about having the PC-A send an Rx to SecondWind, so that we could look into buying a refurb ResMed AirCurve 10 ST-A out of pocket (for possible rush delivery and as a spare unit). the medical asst was confused about why we would want to bypass insurance and go OOP, but... oh well. later that afternoon she sent me a portal message indicating that apparently an order HAD already gone out on Wednesday (04/17) to their DME vendor with the sleep study results attached.

so-- i contacted this second DME vendor to find out about the probable what & when of the equipment they could provide, hoping it would be both (a) ResMed and (b) pronto!

in combo with my basic "LET'S GO!" attitude about getting bipap in place, there's a wrinkle in our personal schedule starting later next week: the one thing my sweetie is still excited about right now is going on our annual Film Festival stay-cation, where we spend 7 days at the theater watching everything we can from morning to evening. my love has put a lot of time and effort into perusing the Festival schedule and reserving tickets for what we plan to see. absolutely, of course, if we have to scratch a day of that for any bipap set-up we will, but... would be a bit of a bummer, ya know? we've already cut down on how many shows we plan to attend, by not staying as late at night as we have in the past, and also know that we might have to skip out on some other stuff if my love just isn't up to it.

[inserting apology here for going on and on. it's just part of how i try to process events, and keep track of things.]

here's the KICKER, though: in addition to the 2nd DME vendor saying on Thursday that they didn't have all they need from the PC-A (they've asked for the face-to-face chart notes or some such) so as to be able to set up an appointment yet, apparently they are talking about setting up a Home Oxygen Concentrator, not BiPAP!

i have poked around in old topics here and found that yeah, there are some PALS with pre-existing COPD who, in some cases, *also* have supplemental O2 happening. i think, though, that i have already learned enough to know that if what the 2nd DME rep told me about the order was accurate this plan is WAY off the mark. i'm frankly surprised by it, too, given that it was the PC-A who first mentioned possible MND as a factor in my sweetie's basket of symptoms. i'd have thunk that would indicate more awareness on her part as to crucial need for addressing THAT part of the respiratory issue!

so... i'm face-palming again... wondering how and to what extent the combo of COPD and ALS needs to be addressed. are there things about the COPD aspect that i need to better communicate to the ALS Clinic? or is the COPD "merely" something that is likely to affect getting the BiPAP settings dialed in for best results?

 

[lgelb]

I'd always keep a copy of your own rx for meds, devices, and such, not let someone send one to someone else without your having a copy. SecondWind doesn't care who sends them the rx, but you might need it one day.

O2 only in place of BiPAP makes zero sense. O2 in addition to BiPAP only makes sense in a few PALS for reasons that you haven't brought up.

 

[timrous beastie]

O2 only in place of BiPAP makes zero sense.

that's EXACTLY what i thought!

i just completed transaction with SecondWind for the refurbished ResMed AirCurve 10 ST-A BIPAP, with a DreamWear Full Face FitPack. paid for expedited shipping and should have it in hand by tomorrow evening. can we talk about settings via direct message, and if so, is there specific data that you would need from me? (i am continuing to study the resp sticky.)

 

[Nikki J]

It is sad that we have to protect ourselves from health care workers who don’t know als. This happens with doctors, nurses, first responders and the vsrious therapists too

 

[lgelb]

Yes, I will PM you, TB.

 

[timrous beastie]

It is sad that we have to protect ourselves from health care workers who don’t know als.

thanks for reminding me that i need to print out those MEDICAL FYI forms they have over at ALS.org, Nikki.

======

well.. i paid for expedited shipping, but Mother Nature interfered. got notice early on Saturday that delivery would be delayed "one business day" due to weather. pbbbbt!

email heading your way, Laurie, then i'm off to bed. going to help with a combined Earth Day festival and UU church service on Sunday.

g'nite all.
"beastie"