rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
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.
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.
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