Old 10-21-2010, 12:19 PM #1 (permalink)
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Exclamation BiPAP woes, and what I've learned.

I am hoping by sharing this, I can help others avoid the same problems.

First, a little background information: When I first got my BiPAP, even though I had the initial diagnosed of PBP, the BiPAP was ordered by my laryngologist, and the diagnosed on script was for sleep apnea. I had private insurance at the time, and I lived in a different state than I do now.

After being set up with my BiPAP by a home care provider in NJ, I stopped the COBRA of my health insurance, and switched over to Medicare. This initially cost me more, as the copay was more with Medicare, but I saved on virtually all of my medical expenses just by not having to pay COBRA, which was prohibitively expensive.

When I found I was moving to Maryland, I called the home care company and asked what I should do about the machine. The person I spoke with told me to keep it (she said she "checked") and they would just handle things long distance. At the time I was relieved because it was one less thing that needed to be handled with the moving process.

A few months after my move to Maryland, the clinic wanted me to have a cough assist machine. It was ordered, and the RT who worked with the home care provider which set me for the new machine (local to me in Maryland) also adjusted my BiPAP, got me a new mask, etc.

He also told me I did not have the correct type of machine for MND, a different type was better. However, at this point, I was being required to "buy out" my machine from the provider in NJ. Because, after 13 -15 months, this is just what Medicare does. So, when this new RT in Maryland advised me that I should have a BiPAP with different capabilities, the timing coincided with the home care company in Jersey changing me over from a rental with a co-pay, to purchasing my existing machine from them. As I was happy with my machine, or at least I thought I was happy, it did not seem to be an issue.

Fast-forwarding to a couple of months ago.... I started having trouble if I let my neck turn when I was sleeping, either when I was on my back, or if I tried laying on my side. After only 20 minutes or even less, I would get the horrible co2 buildup headache. Nights were not so restful. I began sleeping with a horseshoe travel pillow in the attempt to help keep my head straight and my airway open.

Then, last week we went away on vacation and stayed in a fairly remote mountain cabin. My BiPAP broke. In retrospect, I don't know if it was gradually tanking for a few months, and that was why I was getting the headaches at night, or whether they were due to progressing weakness. Either way, I was stuck sleeping sitting up in a chair the last couple of nights while we were away.

The real difficulty started when we got back in town. I called the local, Maryland home care company who provided my cough-assist, and got voice mail. Called the ALS clinic, because I could not remember the RT's name and could not find his number. Got that from them (they're awesome) called that RT. Got voicemail. Mind you, my voice is so weak, its hard to be heard on the phone anyway, so none of this was any fun. I called the home care company in Jersey which I'd "bought" the machine from. The person I spoke to said they did not warranty it any longer because it was mine, not theirs....

Then the local RT called me back, and in effect said that what they (the New Jersey home care company) told me was b.s., and they should overnight me a loaner machine. He said that because my broken machine did not come from the local care provider, that he was unable to procure a loaner for me from them. But, he said he would work on getting me one that would be mine to keep, even though it probably couldn't happen until Tuesday. (This was Friday). I called the company in NJ back. Told them what he said. (minus the b.s. part). She said she would have to let me talk to one of their RT's. No one called, I called back, was assured he had the message, was just with patients, no one called. I called back another time. Again was told my message was received. No RT from the Jersey company ever called me.

So............. Friday came and went, I ended up trying to sleep sitting up in bed (I have the adjustable type) Mind you, with each passing day I felt markedly worse. My routine, before the machine broke, was to take a nap every afternoon with it, as well as sleep all night with the BiPAP. And, just as I believe the BiPAP accumulatively helps us, not using it accumulatively hurt me.

Saturday, after three more calls to them, (I called every hour on the hour) a RT from the NJ company FINALLY called me. We tried to reset the machine (had already done this, and failed, with the Maryland RT) Surprise, it did not work. So this guy tells me that first thing on MONDAY someone would call me and set up sending me a loaner machine, that it would come by ground UPS and if I wanted it overnighted, it would be at my expense. He had no explanation as to why no one had called me on Friday, AND he said I should have changed home care providers when I moved to a different state the previous year. Even though his company had told me the exact opposite, I tend to believe that this is true, and anyone who is reading this, and plans to move, even if its an extra added hassle, do yourself, or your PALS a huge favor, and find a new provider and work out getting a machine from them for your new residence!

So, Saturday I "slept" sitting up, (not much) and Sunday as well. I felt like death during the day, (and during the night too) ~ My point being that the effect of not having the BiPAP was way beyond it allowing me to sleep.

Monday, "first thing in the morning" no one called me from NJ. I called them. Was told a manager would have to call me to arrange how the loaner machine would be shipped to me.

Then, the RT from Maryland called me. Told me he'd been working all weekend to get me a machine. And wow, was I impressed! He'd called my pulmonary doctor, he'd called the ALS clinic, and gotten them to write me a script for a BiPAP with ALS as the diagnosed (medicare will only approve a new machine every 5 years, so they would not have covered another machine for me using the old script which had the diagnosed of sleep apnea). He said to tell the NJ to forget about the loaner, and he would get my broken machine and try to fix it, and if he couldn't, would send it back to Respironics for me. He apologized that he would not be able to bring it out until the following morning.

He brought me out the correct type of BiPAP for MND. The kind of machine is an AVAP. An AVAP estimates the patient's tidal volume with each breath and compares it with the target tidal volume. If necessary, the algorithm slowly increases or decreases inspiratory pressure for each breath. The Rt, also set the machine to take a stronger breath for me (blow harder) if I do not breathe on my own for longer than 5 seconds. My old BiPAP was the Respironics M series, and it would sense when I started to breathe in or out, and used this as a trigger for which level to blow, but if I didn't breathe on my own, it would not do it for me. As far as I know, it did not perform any sort of calculation which analyzed my actual tidal volume. So, it did not adjust to how well I was actually breathing, and this probably would explain why I'd started getting the headaches while I was using it. Or, maybe it was breaking gradually, or maybe I was just getting weaker. Or, it was a combination of all three.

It took me a short while (like an hour or so) to grow accustomed to breathing with the machine, instead of it breathing with me. It allows me to adjust the rise time (how long between inspiration and expiration. The RT had it set at the fastest, and when I dropped it down to almost the slowest allowable rhythm, that made it easy to get used to.

So:

1] If you move, BiPAP rental needs to be addressed.

2] Remember that if your insurance is Medicare, that it will require you to purchase your rental equipment after 13-15 months, and that will affect how your home care provider will handle any claims.

3] If you have questions about your machine, if it is the optimal type for ALS, check with your RT to make sure it is.

Last edited by rose : 10-21-2010 at 12:28 PM
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Old 10-21-2010, 12:55 PM #2 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Thank you Diane for the super valuable info. You are such a doll, so sorry you had to go through all of this, so glad you are feeling better, this info will prove such a gift for so many, thank you as always for being another reason why this forum is priceless, and so are you.
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Old 10-21-2010, 02:40 PM #3 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Diane Thanks for sharing; I am sorry you had so many issues. You would like to think that with this condition people would show more compassion and sense of urgency to help you. It just goes to show how bureaucratic and insensitive health care has become.

I am glad that you got what you need now. I hope you are sleeping better.
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Old 10-21-2010, 04:02 PM #4 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Diane- im feeling the same way the others are. How horrible you had to be so uncomfortable for so long. But bless that RT!
Im very glad your new machine is doing its job and that you like it.
But I have a question- doesnt your RT come out once a month or every other month to check your machine to make sure all is well with it?
Just wondering because Rays RT does this with his vent. But then again, a vent is different than a BiPaP.
Glad youve found your way back to us.
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Old 10-21-2010, 04:13 PM #5 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Excellent advice Diane, just sorry you had to go through the whole experience. A BIPAP is a big ticket item in regards to reimbursement. Shame on the first company for taking the monthly reimbursement even though you were out of their service area. If nothing else, they should have helped you problem solve like the second company did. The second company was motivated by the high reimbursement so hopefully you will have good service with them.
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Old 10-21-2010, 06:14 PM #6 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Thanks everyone,

I didn't want to make such a long post, but it seemed like more people would pay attention, than if I just said the last part, (points 1-3) live and learn!

Dana, your point about reimbursement is well taken. No, the home care provider in NJ never ever offered or attempted to keep in touch with my needs. I did not ever receive a follow up call from their RT the entire time I lived in their service area. .. And getting a mask that actually fit? forget about it. Ended up purchasing one online.

Yes, Liz, he, the RT was very forthcoming about being prepared to come out once a month. He has been calling periodically to check on how the cough assist was, and if I needed supplies, but until this happened, I was making do. I needed a new mask, but did not even know that Medicare will pay for a new gel insert EVERY month, until he told me this on Tuesday. Of course, if we care for them, they will last a lot longer than a month.
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Old 10-22-2010, 07:30 PM #7 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Hi Rose,
I had a sleep study three weeks ago and got the results today--------------NORMAL

I was at Duke Univ ALS Center this week,they had no results of my sleep test yet,but said I should get a BiPap, as I would need it in the near future and try to get used to it,also begin to think about a feeding tube within the next six months while I am healthy.I made myself a great cheese buger tonight.Any thoughts?
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Old 10-23-2010, 12:10 PM #8 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Diane,

Sorry for what you have been through on this. I can't imagine the horror in not having breathing assist when you need it to sleep, especially when you're getting the run-around and no firm end date to the misery.

But I thank you for posting this. This is very timely for me, as I will go on BiPAP soon, and there are similarities in my case:
- My prescription states the reason as apnea
- I'm on private health insurance currently, an HMO program
- I'm switching to Medicare soon (at the end of this year)

Since I'm on an HMO I'm not sure how much say I'm going to have in it, but I'm going to push the RT for a solution that is right for ALS, not just for apnea. Some people in my ALS Association support group mention the Respironics ST but also the Trilogy as a better solution. Who makes your AVAP? Do you know if the Trilogy is an AVAP?

-Tom
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Old 10-25-2010, 07:08 PM #9 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Beach Bum,

That is really great that you are not experiencing apnea. I don't really know how to advise you. If you do not show signs of sleep apnea, then your machine would have to be due to ALS, and that (I think) requires you FVC to be below a certain point, for insurance to approve and cover the prescription. Hopefully another member will know what number the FVC needs to be below for this. My FVC has fluctuated quite a bit, from as high as 100% to the low 60%. Last time it was tested, it was a little under 80%. However, what is low for me (consistently) is my MEP and MIP, last test they were at 40% and ? (don't remember) these were low enough to qualify me for the machine with an ALS diagnosed..... but yes, go for that cheeseburger

Tom,

I ran into problems with the initial machine prescribed due to sleep apnea. Even though my doctor called and spoke with the sleep clinic doctor, and he knew that my MEP was low (even back then) because the script was written for apnea, I had to try and fail a CPAP machine before being allowed to move to bipap. The cpap was a nightmare for me. It might not be for you, if your exhale is good, but even if it seems like it works for you, you need to SAY that it isn't. Its the only way you'll get a bipap via the apnea diagnosed. With an HMO, they are not going to want to pay for BiPAP if they can help it (costs maybe 4 - 5 X more than BiPAP) The RTs who worked for the home care company which provided my machine really had no input as to which machine I would receive. This should not come as a surprise after reading of my experiences with that company anyway. First RT came out to my house, and showed me ONE mask, insisted that it fit, and left within 20 minutes of arriving. (I thought I had more charm that that! lol). Maybe if you called the MDA rep from the clinic you attend, as they're usually pretty good with dealing with bureaucratic red tape, that person could help steer you the right way. I don't know if the Trilogy is an AVAP. Some machines have several capabilities, and I don't know what sets the Trilogy apart from others. I am liking mine, although I still prefer me signaling the machine when to breathe in or out, instead of the reverse. Apparently they want me to have the set breathing because I don't breathe enough, to force me to breathe more, which is fine when at rest, but moving around our respiration fluctuates, and its not as practical except for sleeping (this is just my opinion, so far, on this) I plan to contact my RT this week and see if I can't try having the machine set to respond to me, (I read in the manual that it can be)

For anyone starting out using for the first time, having the machine sense the breathing would have to be immensely easier to grow accustomed to.

Don't know if any of this helps, maybe someone else can add what they've learned.
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Old 10-25-2010, 11:13 PM #10 (permalink)
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Default Re: BiPAP woes, and what I've learned.

My BiPAP machine (ResMed VPAP ST) senses my breathing, fast or slow and works with me but if I don't breathe for a few seconds it will make me breathe. I found it very easy to get used to and actually look forward to it now except when my nose gets itchy.
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Old 10-26-2010, 08:56 AM #11 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Barry, that is how my previous (now kaput) bipap worked, in that it sensed my breathing right away. However, it would not take a breath for me, and did not monitor my actual tidal flow. This feature, the machine monitoring how well I am taking in and expelling air, and adjusting the pressure accordingly, is what the RT and pulmonologist felt was so important for me to have. My RT returned my call this morning, and said that the machine does switch over to sensing my breaths after about 15 minutes. I am just laughing at myself now, because here I thought I was adjusting to breathing with it after about that long. Silly me. He said that he has it set to take a breath for me if I don't breathe on my own after 5 seconds. Anyway, that explains why I have found it so easy to get into the rhythm after a short while (because I'm not LOL) I agree, other than the nose tickle/itch factor, I love the bipap. I'm glad you have been able to get used to it, it makes a world of difference in how well we function throughout the day ~ which I found out the hard way.
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Old 10-26-2010, 10:48 AM #12 (permalink)
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Default Re: BiPAP woes, and what I've learned.

I just attended an ALS conference and spoke with a Respironics rep there. they make the AVAP and Trilogy.
I was loaned an AVAP by my ALS clinic. According to my RT it is the best BiPap
for ALS. It measures your tidal volume and maintains the correct tidal volume for you.
The Trilogy is a small mechanical ventilator that can be attached to BiPap or trach. It has batteries.
My RT thinks it wil be good for me in the future. My HMO (Kaiser is close to approving it). I also have Medicare.
Hope this helps. Pat
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Old 10-26-2010, 11:41 AM #13 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Pat,

Yes, thank you for taking the time to post this. It will help many.

... And, having experienced BiPAP with, and without the AVAP technology, I can say it does make me feel better to have the AVAP. In the start of this thread I'd mentioned how I was getting headaches, multiple times throughout the night, and it seemed to be related to if I let my head turn at all, to where my neck was at an angle. When the old BiPAP died, I questioned whether the headaches could have been due to the machine starting to malfunction. If it was not because of this (and it probably wasn't) then its the AVAP which is making the difference for me now. For the record, I have not gotten a headache since using the new machine, and for the last few months leading up to my bipap conking out, they were a several times a night occurrence. Last Wednesday morning when I woke up after using the new machine for the first night, I felt refreshed, and realized it had been a loooong time since I'd felt that way.
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Old 10-26-2010, 11:58 AM #14 (permalink)
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Default Re: BiPAP woes, and what I've learned.

Quote:
Originally Posted by rose View Post
Pat,

Yes, thank you for taking the time to post this. It will help many.

... And, having experienced BiPAP with, and without the AVAP technology, I can say it does make me feel better to have the AVAP. In the start of this thread I'd mentioned how I was getting headaches, multiple times throughout the night, and it seemed to be related to if I let my head turn at all, to where my neck was at an angle. When the old BiPAP died, I questioned whether the headaches could have been due to the machine starting to malfunction. If it was not because of this (and it probably wasn't) then its the AVAP which is making the difference for me now. For the record, I have not gotten a headache since using the new machine, and for the last few months leading up to my bipap conking out, they were a several times a night occurrence. Last Wednesday morning when I woke up after using the new machine for the first night, I felt refreshed, and realized it had been a loooong time since I'd felt that way.
I am so glad the new AVAP is working for you! I went through the same experience so know what a difference it makes and how much better you feel in the morning. Great news!
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