Can I Get a Mini Lesson From the Experts Here?

Muffy · Post by **Muffy** » Wed Feb 17, 2010 6:58 am

Say, I have a question. In one of your earlier posts you suggested that insurance wouldn't pay for this level of equipment:

viewtopic.php?f=1&t=48795&p=446388&hili ... 2A#p446388

Has something changed that you now qualify?

Muffy

Madalot · Post by **Madalot** » Wed Feb 17, 2010 9:40 am

Muffy wrote:Say, I have a question. In one of your earlier posts you suggested that insurance wouldn't pay for this level of equipment:

viewtopic.php?f=1&t=48795&p=446388&hili ... 2A#p446388

Has something changed that you now qualify?

Muffy

Hi --

Sorry it took me to long to respond.

Being that I have a progressive neuromuscular disease (some form of Muscular Dystrophy -- can't figure out exactly which one yet), I am disabled and on Medicare. Unfortunately, it doesn't matter if my doctors already know that I need the equipment, they have to follow Medicare guidelines or risk me footing the bill myself, which I can't do.

All of my doctors agreed that a person like me "usually" does better on a bipap. But Medicare makes you prove, through expensive and exhaustive testing, that you need anything, which we did through sleep studies. But even then, they aren't going to take my neuromuscular disease into account and will only approve equipment/treatment at the lowest level to start.

So, they approved cpap. After using that for two weeks, we tested my overnight oxygen levels to find that I was still having issues, so they increased my pressure to 13. Two more weeks go by and we test again, only to find that I'm getting worse, most likely having difficulty, due to my neuromuscular disease, exhaling against the increased pressure. At that point, at only at that point, will they approve the bipap machine. I've been on the bipap since mid December and once again, testing in January to find while we're doing okay, still not exactly there. So, now and only now, Medicare approves supplemental oxygen.

It just goes on and on. Like I told another user in a private message, it's like a rollercoaster ride that just doesn't end.

I hope this makes sense and answers the question. If I missed something, just let me know and I'll try to respond as fast as I can.

I truly appreciate the interest and input from everyone.

Muffy · Post by **Muffy** » Thu Feb 18, 2010 3:54 am

Madalot wrote:Being that I have a progressive neuromuscular disease (some form of Muscular Dystrophy -- can't figure out exactly which one yet), I am disabled and on Medicare. Unfortunately, it doesn't matter if my doctors already know that I need the equipment, they have to follow Medicare guidelines or risk me footing the bill myself, which I can't do.

I understand that part.

Madalot wrote:All of my doctors agreed that a person like me "usually" does better on a bipap. But Medicare makes you prove, through expensive and exhaustive testing, that you need anything, which we did through sleep studies. But even then, they aren't going to take my neuromuscular disease into account and will only approve equipment/treatment at the lowest level to start.

Got that too. It appears that they are getting you therapy and equipment you need for Neuromuscular Disease based on the diagnosis of OSA, and then the failure to respond to conventional treatment (CPAP progresses to BiPAP).

http://reimbursement.respironics.com/do ... _FINAL.pdf

http://reimbursement.respironics.com/do ... .0-STP.PDF

However, now you're making the jump to Ventilator, which is a whole new HCPCS Code:

E0464 - Trilogy100 - Pressure support ventilator with volume control mode, may ventilator include pressure control mode, used with noninvasive interface (e.g., mask)

http://reimbursement.respironics.com/do ... -19-09.pdf

which should require different qualifying criteria depending on your insurance coverage, such as:

A progressive neuromuscular disease (e.g., amyotrophic lateral sclerosis, etc.) or a severe thoracic cage abnormality (e.g., post-thoracoplasty for tuberculosis, etc.); and
Symptoms of sleep-associated hypoventilation (nocturnal hypoxemia), such as daytime hypersomnolence, excessive fatigue, dyspnea, morning headache, cognitive dysfunction, etc.; and
COPD does not contribute significantly to the member's pulmonary limitation; and
Clinically significant hypoxemia, as indicated by any of the following:
1. An arterial blood gas PaCO2, done while awake and breathing the member's usual FIO2 (fractional inspired oxygen concentration), is greater than or equal to 45 mm Hg; or
2. Sleep oximetry demonstrates oxygen saturation less than or equal to 88% for at least five continuous minutes, done while breathing the member's usual FIO2; or
3. For progressive neuromuscular disease only, maximal inspiratory pressures less than 60 cmH20 or forced vital capacity (FVC) less than 50% predicted.

Previously, you mentioned

Madalot wrote:Her testing in her office did show some decrease in breathing, but not enough to get insurance to pay for any equipment.

hence my question if something had changed, because from what you have presented thus far, you would not seem to qualify for a ventilator.

Muffy

Madalot · Post by **Madalot** » Thu Feb 18, 2010 6:11 am

Hi Muffy --

Sorry it's this morning before responding. Your questions are very informed and helpful.

We did an overnight pulse ox in January and I spent over 10 minutes at 80% or below. That's what qualified me for the oxygen and probably qualifies me for the vent as as well.

I'm sorry I didn't mention that part. So much has happened in such a short period of time.

Muffy · Post by **Muffy** » Thu Feb 18, 2010 6:21 am

Madalot wrote:We did an overnight pulse ox in January and I spent over 10 minutes at 80% or below. That's what qualified me for the oxygen and probably qualifies me for the vent as as well.

OK, now that needs to be looked at carefully in regards to the

B.Sleep oximetry demonstrates oxygen saturation less than or equal to 88% for at least five continuous minutes, done while breathing the member's usual FIO2

If that low oxygen saturation was not continuous and/or done with supplemental oxygen, then it may not qualify you for a ventilator.

Also, depending on your insurer/region, you may need some/all of the other qualifiers as well.

You should ask specifically, "Hey, are you sending this in as an E0464? What are the qualifiers for that?"

Muffy

Madalot · Post by **Madalot** » Thu Feb 18, 2010 6:34 am

Hey Muffy --

The overnight pulse ox in January was done with no equipment (oxygen or bipap). Totally me, breathing my regular room air. I didn't quite understand that, but they were adamant that it be done that way. Now I know why.

Could it be that between that test AND my confirmed neuromuscular disease (that they have documented is continuing to progress signficantly in the last 1-2 years) be the reason that I qualify for this?

Muffy · Post by **Muffy** » Thu Feb 18, 2010 7:49 am

Well, "IMHO", you need objective data to show disease progression, like deteriorating pulmonary function testing, arterial blood gases and/or measures of inspiratory/expiratory strength. If all those are in within normal limits, I don't see how they can say you're deteriorating from a pulmonary point of view.

In re: the oxygen thing, if they did not see if the low baseline could be corrected by supplemental oxygen, I would question that from both a clincial appropriateness and reimbursement point of view.

Muffy

Madalot · Post by **Madalot** » Thu Feb 18, 2010 8:04 am

Muffy wrote:Well, "IMHO", you need objective data to show disease progression, like deteriorating pulmonary function testing, arterial blood gases and/or measures of inspiratory/expiratory strength. If all those are in within normal limits, I don't see how they can say you're deteriorating from a pulmonary point of view.

In re: the oxygen thing, if they did not see if the low baseline could be corrected by supplemental oxygen, I would question that from both a clincial appropriateness and reimbursement point of view.

Muffy

When I was referencing disease progression, I was referring to the muscle weakness that affects my legs, arms and eyes. I didn't notice any breathing issues whatsoever until last summer and it was just difficulty breathing when laying down to go to sleep. Because it was becoming more regular and I was noticing it more, I mentioned it to my neurologist, who referred me for a pulmonary evaluation. The testing in her office DID show reduced capacity, but it was only slightly below normal.

One thing that may or may not be significant is the history on my neuromuscular disease. Up until I was 38 (I'm 47 now), I had no clue that I had anything wrong with me. I knew I was a weakling and had been a weakling since childhood. But since it wasn't so severe that anyone took notice, I was blamed for my weakness. I heard "you're not trying hard enough" so many times in my life, that it just became my mantra that my weakness was MY fault. And I just kept adapting to the slowly increasing weakness, feeling embarrassed and ashamed, hiding it where possible and finding ways around problems. It wasn't until a neurosurgeon, evaluating me for pain from herniated disks, noticed the weakness and insisted I be evaluated for it.

One of my initial doctors commented that I have been adapting my entire life without even realizing it. He said he could tell by the way I did the simplest thing, like get out of a chair. He said I didn't do it like "normal" people, but to me, it was pretty normal.

My breathing issues are fairly new, but I'm guessing it's also possible that I have had decreased breathing capacity for a long time, but learned to adapt to it in some way. I really don't know.

But I DO know that my pulmonary specialist is very good and well respected. She works at a major university hospital and comes highly recommended by a doctor at one of the most well respected university hospitals in the country.

So, if she's going this route, writing the orders for this equipment, she's done her homework to make sure we can justify it.

But Muffy -- your obvious knowledge and insight is so helpful for me. And I thank you so much for taking so much time to respond to me. Please don't stop questioning me and making me tell you what I know.

Kathy

torontoCPAPguy · Post by **torontoCPAPguy** » Thu Feb 18, 2010 8:13 am

When I was in the hospital they told me that I had gone from "BiPap" to "ventilator" (I was in a coma thereafter) and when I awoke they told me I was on BIPAP... what the machine did was blow air into my lungs and then suck it back out.

You may need to speak with your respirologist to find out exactly what he is prescribing for your particular situation (which I am not familiar with of course). In my case I was an H1N1 survivor and my diaphragm was simply not strong enough to get air in and out due to fluid in my lungs, etc.

Ultimately I survived the situation but that was six months ago and although I am much stronger today, I still have multiple issues that make APAP a blessing for me - once out of critical care in the hospital it seems to me that I get better looked after subsequent to discharge from the hospital. Heck, I couldn't even make it up the stairs to the front door when I got out of hospital. (But they needed the bed).

So, while the definitions may be correct you need to find out exactly what it is they are attempting to do with you and exactly what type of blower they are putting you on. Seems to me, having gone through the whole nine yards, that different folks mean different things regardless of the actual definitions.

I don't mean any disrespect not do I mean to stand on a soapbox here; I'm just relating my experience while in and shortly after release from hospital, where I was on life support for almost a month. Feeling better every day but I know I can do a whole lot better than where I am right now.

Madalot · Post by **Madalot** » Thu Feb 18, 2010 8:19 am

No disrespect taken at all! I'm beginning to realize exactly what you're saying. I think I may place a call to my doctor and see if I can get her to really, really explain whay they're trying to do and why. I thought I got it, but now I'm just not so sure.

I am so confused.

-SWS · Post by **-SWS** » Thu Feb 18, 2010 8:20 am

Madalot wrote: Please don't stop questioning me and making me tell you what I know.

Kathy

My thanks to you and Muffy for the above conversation---especially since we propose to use your learning curve toward helping others in a similar situation.

As with so much of the information Muffy has taught us over the years, the above is my first exposure to the subject matter. Thanks again.

rested gal · Post by **rested gal** » Thu Feb 18, 2010 9:56 am

I'm taking the liberty of copying a post Madalot made from a topic she started earlier this morning. Thought it might be of interest to consolidate her experience with first night on a "vent" machine here:

viewtopic.php?p=452077#p452077
"My First Night Using the Vent" - by Madalot on Thu Feb 18, 2010 7:30 am

Madalot wrote:Well, it WAS an interesting evening/night.

As usual, I went back and got all hooked up around 10p and was laying there relaxing watching TV. Suddenly, the apnea alarm went off. I was a little confused. I was awake and as far as I know, breathing. Confusing. So I laid there watching TV a while longer. Same thing.

When we tested the unit the other day at the DME's office, we FORCED an apnea by me holding my breathing for 20 seconds (the timing they've got to indicate an apnea and trip the alarm). I had a very hard time holding my breath that long to trip it.

I got up and looked through the menus and found a BPM apnea alarm. It was set to 10 BPM. The only thing I could figure is that I was breathing LESS than 10 BPM. But it was going off so often that it seemed that if the machine even thought I was going to go below 10, the alarm went off. It was getting annoying BEFORE we went to sleep, so I tried to set it lower or disable it. I could do neither.

So we went to bed and I laid there, watching the screen. While watching the screen, my typical BPM was between 11-12, occasionally dropping to exactly 10. Almost as soon as I closed my eyes to try to really go to sleep, BEEP BEEP. Apnea alarm. We finally went to sleep and it woke me up around 2am and again at 4:30. I think I had some uninterrupted sleep between those hours. I tried to go back to sleep after 4:30, but the alarm kept going off and I finally turned the machine off at 5am.

The only other "issue" that I have is that unlike the traditional bipap machine, this one, at times, STOPPED giving me the inhale pressure before I stopped inhaling. So, I'm still trying to get air and it stopped giving it to me, almost making me choke and gag. This is probably a simple adjustment.

I am going to call my DME first thing this morning and talk to them about these issues. I'm assuming/hoping that the detailed reporting can differentiate between a true apnea and the BPM apneas that I kept getting all night long.

Editted to add: I just looked through the manual and it could be that there's some issue with the way the machine is set up -- BMP and inhale/exhale ratio -- or something like that. This may be fixable fairly quickly, but I need to call my DME first thing and talk to them about it.

Madalot · Post by **Madalot** » Thu Feb 18, 2010 10:40 am

Thanks Rested Gal --

I'm posting in both threads and just updated some information in the other thread about what's going on. I think we are going to be tweaking the settings for a while. I'm cool with that, but AM concerned that the alarm is keeping my husband up all night. I may have to send him to another room for a few nights so HE can get some sleep.

jnk · Post by **jnk** » Thu Feb 18, 2010 10:50 am

Madalot wrote:Thanks Rested Gal --

I'm posting in both threads and just updated some information in the other thread about what's going on. . . .

My choice, if I were in your situation, if you don't mind my saying so, would be to keep posting serious questions in whatever thread Rested Gal, -SWS, and Muffy are reading and posting.

jeff

Madalot · Post by **Madalot** » Thu Feb 18, 2010 11:51 am

jnk wrote:
Madalot wrote:Thanks Rested Gal --

I'm posting in both threads and just updated some information in the other thread about what's going on. . . .
My choice, if I were in your situation, if you don't mind my saying so, would be to keep posting serious questions in whatever thread Rested Gal, -SWS, and Muffy are reading and posting.

jeff

Valid point, Jeff. Thanks. I'm having trouble keeping up today as it is since I'm working with RT, remotely, making changes to the ventilator settings, then going and laying down to see if the changes seem to resolve some of the issues. I need to go back, again, and try another change.

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