Learning to breathe with ASV

Good point, Bons.
Another example of half lies meant to mislead, since the following does exist: (Ah, I see -SWS has responded faster...)

http://www.nationaljewish.org

Thousands of patients come to us from around the world to team with our expert physicians and researchers and seek treatment for respiratory, cardiac, immune and related conditions.

July 14, 2010

National Jewish Health Named Nation's Top Respiratory Hospital for 13th Consecutive Year
For the 13th consecutive year, National Jewish Health has been named the #1 respiratory hospital in the nation by U.S. News & World Report.

http://www.nationaljewish.org/about/med ... -2010.aspx

"We are gratified to receive this honor once again," said Michael Salem, MD, President and CEO of National Jewish Health. "It is a testimony to our outstanding faculty and staff that they are able to maintain such a high standard of excellence to earn this ranking year after year."

As part of the ranking, board-certified pulmonologists around the country named National Jewish Health more often than any other hospital when asked about the best respiratory hospitals in the nation. In addition to recognition by pulmonologists, the hospital rankings were based upon various care-related factors, such as nursing and patient services.

http://health.usnews.com/health-news/be ... -roll.html

They are nothing to sneeze at...

ozij wrote:Good point, Bons.
Another example of half lies meant to mislead, since the following does exist: (Ah, I see -SWS has responded faster...)

http://www.nationaljewish.org

Thousands of patients come to us from around the world to team with our expert physicians and researchers and seek treatment for respiratory, cardiac, immune and related conditions.

I guess it's no wonder why my doctor considers me a pain in the butt

Bons wrote:

ozij wrote:Good point, Bons.
Another example of half lies meant to mislead, since the following does exist: (Ah, I see -SWS has responded faster...)

http://www.nationaljewish.org

Thousands of patients come to us from around the world to team with our expert physicians and researchers and seek treatment for respiratory, cardiac, immune and related conditions.

I guess it's no wonder why my doctor considers me a pain in the butt

If it's any consolation, Bons, my doctor probably considered me a pain in the butt as well! But we found a great way to work through everything and she and I are doing very well now. I DO credit a lot of people here (too many to name individually) for helping me learn and understand -- with ACCURATE information -- enough to help me help myself with my medical team.

I am forever grateful to them and will continue to utilize the people here as long as they are willing to try to help me. I even have a new question in the works, but am waiting for the Calist nonsense to die down. The last thing I need right now is to ask a serious question, looking for serious help, and get that nonsense.

Bons -- was last night any better for you? I truly hope that this ASV machine can be fine tuned to work for you.

Madalot,
I managed to fall asleep around 1 and stayed with the ASV until a little after 8. I woke up several times while breathing against it. It seems that the ASV is working to the extent that I stayed at much lower pressure during the night (at least it seemed that way - it felt lower than what I was getting on BiPAP and the mask only woke me up leaking once or twice - no where near as loud a leak as when my pressures are 14 or so). I think I can tolerate it until Monday when the DME tech said she'll call, and then I'll ask about the rise rate and the bpm rates to see if they can be tweaked to alleviate the elevating pressure when I'm exhaling. I don't want to reinforce their comments that I'm a control freak!
I must admit that after 40 minutes on the machine I did cave in and take the doc's advice to down a Klonopin. That seemed to help too, because when I did wake up I drifted back to sleep very quickly. I never did fall back to sleep on the ASV when I woke up during the titration study.
Once I learn what software to buy and how to use it (HELP!) I'll be able to tell what it's doing for me. But at least I'm sleeping with it...

I'm glad you had a better night last night! That's good news.

When I was having trouble adjusting to the AVAPS setting, my doctor said that she thought it was likely that I was fighting the machine before I fell asleep. I think that's highly likely as until I really relaxed, I frequently had problems breathing. It was almost like I was thinking too much about it.

And sadly, it still happens at times. Because I think she's right, I force myself to relax and think about something OTHER than my breathing pattern. It usually works for me and once I fall asleep, I'm USUALLY good for the night.

I hope the weekend proves to be calm and easier for you. I think your plan to talk to the DME on Monday and see if you can tweak some of the settings is a good one.

Please keep us posted.

Madalot and Bons, I'm glad to see you two working together.

SWS and Ozij, I'm more than glad to see you both "on the case"! He knows not who(whom?) he is dealing with??

DoriC wrote:Madalot and Bons, I'm glad to see you two working together.

After everything this forum has done for me, if I can give back in any way, I want to. I do not have any experience with the machine Bons is on, but being on a ventilator does give me similar experiences and perhaps he can benefit and not have to go through some of the stuff I went through.

To me, this is what this forum is all about.

-SWS wrote: Also, a machine BPM setting that is not right for your spontaneous breath rate can cause that out-of-sync problem as well.

Sometimes it's just a matter of getting used to the machine's cycling, however...

My breathing is much slower when I'm awake, like 12 breaths a minute. When I'm sleeping it jumps to over 20 breaths a minute. If my back-up (BPM) is set to just below my average, it's too fast for when I'm awake and it pushes me to breathe when I'm not done exhaling. I had to lower my BPM to 4 or 5 when I started out, so that I could fall asleep. When I got used to the machine I switched it to AUTO and it's been great ever since. The backup doesn't wake me up any more and I rarely feel it kick in when I'm awake. Only when I roll over, sniff or do something like that. Within 3 breaths of realizing that I'm still breathing, it backs off.

It takes awhile to trust the machine and not concentrate on your inhales and exhales.

BTW, my sleep Dr. had no idea how to set up my machine.

OutaSync wrote:

-SWS wrote: Also, a machine BPM setting that is not right for your spontaneous breath rate can cause that out-of-sync problem as well.

Sometimes it's just a matter of getting used to the machine's cycling, however...

... If my back-up (BPM) is set to just below my average, it's too fast for when I'm awake and it pushes me to breathe when I'm not done exhaling. ...

BTW, my sleep Dr. had no idea how to set up my machine.

OutaSync, you and -SWS hit the nail on the head. There are several reasons it can be a struggle to synchronize with an ASV. I found that it took about two or three months before my breathing became more regular using my ASV machine. You will adjust to it. But you are absolutely correct, these machines can be very frustrating initially.

By the way, it is an Adaptive Servo-Ventilator; not "automatic". Though the machine is adaptive, the algorithm follows a three minute window to determine what is normal for your breathing. If it predicts your current breathing rate will not fall within that "norm", then the adaptive part of the algorithm kicks in and the higher pressure is used. Why do this? It helps increase the oxygen content in the blood to break the undershoot/overshoot cycle that leads to central sleep apneas (or periodic breathing).

Though Calist trashes these machines, it has been a Godsend for me. My health was failing quickly without it. NOTHING else worked. CPAP, BiPAP, even oxygen did not make any difference. Without it, I ended up with uncontrolled high blood pressure (regardless of medication). That and Ibuprofen use led to kidney damage. Now, with my ASV unit my blood pressure is stable and so is the kidney damage. Not better, but not getting worse. I had more than one doctor tell me that I could not be having problems with central apneas because it is quite rare. It would just take proper titration. Yeah, right! Without ASV, I know my outlook was bleak. I was in very bad shape. But the increased sleep has made a huge difference in my life.

Bons, I am glad to see that the Klonopin helped keep you asleep well enough to last through the night. Another medication that can help induce increased sleepiness, without significantly interfering with the sleep cycle is Remeron. It is an off-label use of it, since it is an anti-depressant, which has a side effect of increased sleepiness.

By the way, you will find that when the ASV unit ramps up the pressure, it increases the tendency for the mask to leak. Though the Respironics systems are not as sensitive to leaks as the Resmed unit, it can still be a big issue. Essentially any seal tends to fail when the pressure changes dramatically. As a result, I need to change my mask more frequently than I did when I used a BiPAP unit.

Also, you asked about the software. From the Respironics website it appears you need Encore Pro software, a Smartcard reader and a Smartcard. Though I have a Resmed ASV unit, you might try the same approach I did. I contacted both my doctor and DME. Because I was actively interested in managing my therapy, I asked for a copy of the software and the interface cable. Resmed provided an old, but workable copy and a cable. Respironics might do the same. In my case the doctor and DME felt it would allow me to proactively request help if there are issues.

You can find the part numbers at:

http://bit.ly/chkLMn

The Respironics page for the BiPAP autoSV Advanced is:

http://www.healthcare.philips.com/main/ ... efault.wpd

Hope all that helps.

JohnBFisher wrote:

OutaSync wrote:

-SWS wrote: Also, a machine BPM setting that is not right for your spontaneous breath rate can cause that out-of-sync problem as well.

Sometimes it's just a matter of getting used to the machine's cycling, however...

... If my back-up (BPM) is set to just below my average, it's too fast for when I'm awake and it pushes me to breathe when I'm not done exhaling. ...

BTW, my sleep Dr. had no idea how to set up my machine.

OutaSync, you and -SWS hit the nail on the head. There are several reasons it can be a struggle to synchronize with an ASV. I found that it took about two or three months before my breathing became more regular using my ASV machine. You will adjust to it. But you are absolutely correct, these machines can be very frustrating initially.

By the way, it is an Adaptive Servo-Ventilator; not "automatic". Though the machine is adaptive, the algorithm follows a three minute window to determine what is normal for your breathing. If it predicts your current breathing rate will not fall within that "norm", then the adaptive part of the algorithm kicks in and the higher pressure is used. Why do this? It helps increase the oxygen content in the blood to break the undershoot/overshoot cycle that leads to central sleep apneas (or periodic breathing).

Though Calist trashes these machines, it has been a Godsend for me. My health was failing quickly without it. NOTHING else worked. CPAP, BiPAP, even oxygen did not make any difference. Without it, I ended up with uncontrolled high blood pressure (regardless of medication). That and Ibuprofen use led to kidney damage. Now, with my ASV unit my blood pressure is stable and so is the kidney damage. Not better, but not getting worse. I had more than one doctor tell me that I could not be having problems with central apneas because it is quite rare. It would just take proper titration. Yeah, right! Without ASV, I know my outlook was bleak. I was in very bad shape. But the increased sleep has made a huge difference in my life.

Bons, I am glad to see that the Klonopin helped keep you asleep well enough to last through the night. Another medication that can help induce increased sleepiness, without significantly interfering with the sleep cycle is Remeron. It is an off-label use of it, since it is an anti-depressant, which has a side effect of increased sleepiness.

By the way, you will find that when the ASV unit ramps up the pressure, it increases the tendency for the mask to leak. Though the Respironics systems are not as sensitive to leaks as the Resmed unit, it can still be a big issue. Essentially any seal tends to fail when the pressure changes dramatically. As a result, I need to change my mask more frequently than I did when I used a BiPAP unit.

Also, you asked about the software. From the Respironics website it appears you need Encore Pro software, a Smartcard reader and a Smartcard. Though I have a Resmed ASV unit, you might try the same approach I did. I contacted both my doctor and DME. Because I was actively interested in managing my therapy, I asked for a copy of the software and the interface cable. Resmed provided an old, but workable copy and a cable. Respironics might do the same. In my case the doctor and DME felt it would allow me to proactively request help if there are issues.

You can find the part numbers at:

http://bit.ly/chkLMn

The Respironics page for the BiPAP autoSV Advanced is:

http://www.healthcare.philips.com/main/ ... efault.wpd

Hope all that helps.

Real quick before I run off to work. I can appreciate the difference between the AutoSV and the AdaptiveSV however a great deal of patients, especially on this forum enjoy saying ASV as if it is a universal acronym. Hence the chaos. The core of the issue surrounding ASV and DMEs and patients who enjoy diagnosising themselves really sits here...

http://en.wikipedia.org/wiki/Death_of_michael_jackson

Scrapper, god bless em would, I'm sure complain about the suggestion that he should read something however I'm sure that most of you are familiar with the very public circumstances of a patient who made demands of his physicians until eventually finding a physician stupid enough to give him what he wanted. This, although highly publicized, is nothing new. I actually found CPAPtalk.com because a patient of mine related the name of the site to me after I asked him why he had gone off treatment. He gets out of the ICU in a few days, chronic pneumonia. Now I'm not going to blame his condition squarely upon the person that gave him bad advice because in fairness the patient did a lot of other stuff to land himself in the ICU as well. But I would like you to consider that with each careful and articulate person on this forum trying to help out their fellow neighbor there also seems to be a doctor hating user that expounds the use alternative medicine while trying to convince people that everyone involved in their treatment is lying to them.

This is not entirely productive.

Ugh! I despise the need to do this. Feels as if I should take a shower after quoting this, but I need to correct the misinformation:

Calist wrote:... I can appreciate the difference between the AutoSV and the AdaptiveSV however a great deal of patients, especially on this forum enjoy saying ASV as if it is a universal acronym. Hence the chaos. ...

No, Calist, as usual you show a complete lack of understanding of the issues.

AutoSV and AdaptSV (not AdaptiveSV) are the trademarks for the technology by Respironics and Resmed, respectively. Adaptive Servo-Ventilation is the technology name provided by the first manufacturer and researchers who pioneered the technology.

Let me provide a similar example: Why are the machines called BiPAP by Respironics and VPAP by Resmed? The technology is known as BiLevel Positive Airway Pressure. The same situation exists with those units. BiPAP and VPAP are trademarks of Respironics and Resmed, respectively.

Calist wrote:... The core of the issue surrounding ASV and DMEs and patients who enjoy diagnosising themselves really sits here...

And no one disagrees with the need to involve a QUALIFIED medical professional. I certainly do not. I *insist* that anyone - especially for anyone with an ASV unit - discuss their situation with their doctor.

But the thing this forum can and does offer - and is valid for the patient and medical professional - is the chance to review your situation and hear the experieces of others. Sometimes in the process of learning how to deal with a complex medical situation, we need to learn the language. This can often help guide the patient and doctor as they talk about the patient's situation. THAT and ONLY that is what CPAPtalk.com does offer. We are very clear that patients should become their own advocate. Not take the suggestion of someone on the forum and discontinue use of their unit. I do not think you would find that suggestion anywhere on this site.

Bons, I know you understand this. I offer this for other readers, who might otherwise be confused by Calist.

----
Edited for spelling mistakes.

What's bothering you is that we refuse to be just docile patients and prefer to educate ourselves so that we instead become medical consumers and are now partners with our doctors in our health issues. What's wrong with that?

DoriC wrote:What's bothering you is that we refuse to be just docile patients and prefer to educate ourselves so that we instead become medical consumers and are now partners with our doctors in our health issues. What's wrong with that?

I'm beginning to believe that Calist is intentionally providing wrong information, hoping patients will take that information back to their doctors and look like total idiots. Then this forum can be blamed. Why he would care is beyond me, except for perhaps some of HIS patients have come here and figured out that he's incompetent. Maybe that's why he's so angry at this site.

Thank goodness there are enough very knowledgeable people here that make a point of providing ACCURATE information and take the time to explain it so us "stupid" patients can absorb it.

Ventilators don't use AVAPS -- and I must work for cpap.com -- that still cracks me up.

A troll's raison d'etreis to elicit attention, and get people to respond to him.
Misquoting, "misunderstanding" and saying things that are "almost right" are a great way of provoking response. Nothing irks a person more than being misunderstood or misquoted, the temptation to respond is almost irresistible..

ozij wrote:A troll's raison d'etreis to elicit attention, and get people to respond to him.
Misquoting, "misunderstanding" and saying things that are "almost right" are a great way of provoking response. Nothing irks a person more than being misunderstood or misquoted, the temptation to respond is almost irresistible..

As I noted, were it not for other readers I would simply ignore Calist. Without responding other readers new to the therapy might be misled.