50 ways to leave your clinic

[MupstateNY]

P.S. His name is Dr. John Hansen-Flaschen and he said that everyone in his group takes the same approach as he does.

Perhaps Tom's primary could order NIV, to get a quick start? I told my primary today that I would like to start with CPAP and she said her office provides the sleep study and the CPAP!

 

[affected]

That's interesting because we never recommend CPAP for PALS, only BiPap.

 

[Tomswife]

Mupstateny. We did attend webinar. We are looking for a pulmonologist.
Hugs

 

[lisa g]

I was diagnosed with sleep apnea in 2016 before my ALS diagnosis. I used a CPAP. I use a highly regarded local pulmonologist being that my ALS clinic is 3 hours away. My pulmonologist said a CPAP was not good for ALS and switched me to a trilogy. I have PFT'S done every 6 months and though my tests are in the normal range I use the trilogy at night for peaceful sleep. I keep local doctors so I don't have to run to clinic when something new comes up.

 

[Nikki J]

I personally would not want cpap especially if it was not ordered and managed by a pulmonologist. But I wouldn’t trust a pulmonologist that recommended it to me. I missed that part of the webinar and wonder at his reasoning.

 

[Cowboybob]

For equipment call your local ALS association. Mine in Minneapolis has showered me with durable medical equipment. Then also need to be proactive, use Amazon Prime can always return items for free. There is a group that will help with expenses. Your local ALS association would know name they are the group that sponsors voice banking, name escapes me now.

Find a clinic that has a three month ALS clinic. If you’re rural well it’s probably going to be very difficult. I live in Minneapolis but travel to Rochester, MN to the Mayo every three months. They have a portal where I can ask questions and I get answers usually in a few days

My primary rubber stamps whatever Mayo says. I guess I’m lucky. I still have problems can’t find the right equipment. Nothing fits me as I’m a large person. It’s frustrating but that’s life.

I’m 7 months into this disease. It’s terrible on my body. I try to stay calm, look for humor every day. I’m not depressed I can’t be because I have a wife who tries to help and support me.

Take a deep breath, find a spiritual outlet snd
let your friends know that texting, calling, emailing or stopping over for a cocktail around 4:00 pm which is my up time.

I’ve chosen not to go to extreme measures to extend my life. I’m not going to put additional stress on my wife. Plus, the medical system in most areas of the country not set up for daily help or advice.

Whatever path you choose good luck!

 

[KimT]

I thought he said a smaller BiPap before going to a Trilogy or one of the more expensive ones. I don't remember hearing anything about a cPap and, I agree that no PALS should be using a CPap when BiPaps are available.

I also got very annoyed that the only reference was FVC. I think all PALS should have a comprehensive pulmonary function test if diagnosed or if suspect respiratory onset. I had one at Mayo, then another two years later. Although my FVC was less than 80%, my MVV was 120% and both MIP and MEP were significantly above 100%. My local pulmonologist prescribed BiPap based on a sleep study and FVC. I had a second sleep study when I lost 10 out of the 30 pounds Mayo told me to gain, and my sleep study no longer indicated the need for a PAP. So, it's very complicated and pulmonologists need training or, at least, need a willingness to learn.

 

[lgelb]

I am appalled they would say to start on CPAP. That is a simple lack of comfort with the cash market and how real life works.

If you can get an rx for CPAP, which any PCP on up can write, they can just as easily write a BiPAP rx that you can convert to a new or refurb BiPAP (the cheaper kind that requires AC power) with cash and seek reimbursement later, and/or use as a backup machine. You can even potentially sell it back to SecondWind or to someone else down the line. I'm always happy to help you pick the best machine.

On SecondWind, such machines (+ a humidifier) are currently available for probably less than your jacked up copay for RT visits and a delayed NIV (Trilogy or Astral) machine order would be.

 

[lgelb]

PALS do NOT need a sleep study to get BiPAP reimbursed if they meet FVC and/or MIP thresholds, and seldom do the settings generated from a sleep study stand up anyway because most people don't spend their lives in a sleep lab or even in their own bed with unfamiliar sensors. Besides which, the starting point for most PALS NIV settings whether imputed from a sleep study or not, is generally too high and/or not synchronized to their natural breathing.

If Tom doesn't meet the criteria of FVC<50% of predicted and/or MIP<60 cm, he can still get a script for a starter BiPAP machine with the above options, just not guaranteed reimbursement! PALS need the option for deeper breaths than the max 3cm/Hg IPAP to EPAP difference in CPAP allows.

You can even buy Astrals and Trilogies for cash. I help some people in other countries who do this.

Anyone who needs machine settings or mask help, you don't need to go to Philly, either -- sorry, but that's a commercial for their setup and anyone who needs a better setup deserves it sooner rather than later. So I'll do a commercial for myself. I'm free, no driving required, and there's no one here I've been unable to help.

 

[affected]

and it seems like 2 threads have been mixed up - site issue?
This is the thread about Tomswife and the clinic and now replies on that thread are in the breathing webinar thread?
weird much?

 

[MupstateNY]

Gosh, maybe I misunderstood. I will write to my primary and provide a corrected request.

Remember, everyone, I pay $0 copay as long as Medicare covers whatever the heck I need -- because I'm dual eligible. Medicaid picks up all the copays.

I've only had PFT and peak flow so far. The pulmonologist I saw wanted me to get an arterial blood gas (ABG). Apparently it's quite painful unless you get "injection jet lidocaine." I called the closest Guthrie office today (because most of the time, their providers are less overwhelmed than the others, and very knowledgeable). I was able to speak with the nurse and she called me back to say that if they want the ABG they'll give me the injection jet thing.

Yesterday after the webinar I had booked a Guthrie pulmonology NP appt for this afternoon, but they had to reschedule because the provider was home sick today. But it turns out I can see the MD on 1/24. I'll book that (I love it that I don't have to PHONE them to schedule appts) and see when the NP is back in office.

My very special primary CALLED me today! (her initiative) to make sure we were on the same page about the things I've requested. She explained how palliative care works and I will post separately about that. I feel less anxious already.

I want something for breathing because I wake up tired after 9 hours.

 

[MupstateNY]

affected -- I think it's my fault. Tomswife said that Tom doesn't have NPV yet despite his progression, so I tried to encourage her to get him the NPV.

 

[lgelb]

This is a no-fault zone, people.

Some breathing problems don't meet Medicare criteria, but can still benefit from BiPAP. So points to remember are, you don't need a pulmonologist, ALS clinic, or insurance to get a BiPAP. Or much else.

I've had an ABG. It's not so terrible. Not sure why one would be indicated for ALS but maybe there's another reason.

 

[MupstateNY]

That pulmonologist did not seem to know what he was doing.

I would love to get some help figuring out what should be ordered. Thank you so much for offering.

I also need instructions for getting started with the power chair (from whoever feels like helping me). Maybe I should try to borrow from ALSA so I can find out what works well for me?

 

[lgelb]

Happy to help on the wheelchair front as well, but who is measuring/ordering? There is a form they have to fill out, that is quite detailed. Most of us, including me, would recommend Permobil, which I've also worked with professionally.

Usually, first question is front wheel vs. mid wheel. Depends on your home and where you go/what the outdoors looks like.

Steve and others have some good posts on PWCs here also.

I will PM you about BiPAP as am not sure of your situation.

Cowboy, what equipment are you having difficulty finding in the right size?