Too Late for CPAP?

[richb]

Your cardiologist will have several options besides ASV machines to treat your Cheyne Stokes Respiration. There are at least two medications that have been tested for treatment of CSR associated with CHF. In addition treatment of CHF itself can reduce the incidence of CSR. Regarding your CPAP machine: the literature is not clear whether CPAP is contra indicated in CHF with low ejection fraction. What is clear is that CPAP does not treat Cheyne Stokes Respiration. Get on the phone!

Rich

[Sleeprider]

Very good post Rich. As the story came together here on the forum, I just scratched my head how a complex late-stage CHF patient gets prescribed CPAP without a sleep study.

We don't often get this kind of situation here, but one could only hope that if a "sleep doctor" was involved, that he would consult with the patient's cardiologist, or at least be familiar with the significance of CHF to avoid relying on a home study and self-titration.

[OldCoot]

Thanks for the help guys. I'll try to get hold of my cardiologist today (good luck, right?).

BTW, I can't blame my cardiologists about the late study...

First, I didn't see a cardiologist between my first heart attack in 1999 and my second one in 2015 (my stupidity).


My new cardiologist in Hendersonville, NC, was pretty lame. ...it's a long story.

After my third heart attack last year we moved to Greenville, SC and the new team of cardiologists scheduled a sleep study and pacemaker/ICD surgery, but I cancelled the sleep study to recover from the pacemaker surgery (sissy) and didn't try to reschedule one until recently. I would have to wait three months for the new study (August) unless I did it at home, so that's why I did it at home.

[richb]

It is fortunate that our friend OldCoot was willing to share his data with us. It seems that there are a lot of "professionals" in this field who spend little time educating themselves. And, OldCoot, keep us posted as to the kind of treatment your new Cardiologist proposes.

Rich

[Sleeprider]

Oldcoot, was the physician that prescribed CPAP aware of the CHF and cardiac history? If not, that was vital information, and he may be able to reconsider your situation upon hearing of the periodic breathing (Cheyne Stokes Respiration) and central apnea. If you have difficulty recruiting your cardiologist's participation, then I would certainly give the sleep doc a try, if he was unaware of this history. If he was aware of it, then there is little hope for the guy, and I'd avoid him, although it would be interesting to hear his side of the story.

[Mark Douglas]

It is fortunate that our friend OldCoot was willing to share his data with us. It seems that there are a lot of "professionals" in this field who spend little time educating themselves. And, OldCoot, keep us posted as to the kind of treatment your new Cardiologist proposes.

Rich

hey you OldCoot. I'm mid sixties and I want to add something to the discussion.

NO ONE is as interested in you being healthy as you!

after being here even a short while you will be much better able to understand and receive the treatment you need and it may be possible to change your life more than you imagine right now. You may also come to learn just how ignorant or perhaps uncaring is much of the "sleep apnea" industry. I'm not a doctor but I have slept at a Motel 6 and from what I have learned your heart issues might have originated in sleep apnea. My issues were not (yet) as serious as yours however I now know I have had OSA 40 yrs or more! I have healed a great deal and continue to do so and hopefully you also.

Proper mask fit is a Really Big Deal.

I wish you well.

[PoolQ]

Typically in most situations, anything having to do with heart health really gets insurance and suppliers moving much faster than normal. Do not accept normal time frames. You need to get on the right therapy and perhaps more importantly off the wrong therapy.

Make sure you bring up your heart health with every one you talk with, do not assume that they know or remember. It's pretty easy "It's just that I am concerned because of my CHF and want to make sure that this is taken into consideration". I am not close to your situation and I got my machine prescription changed, approved by insurance, and picked it up the same day.

[OldCoot]

PoolQ,
Pretty unbelievable how fast you got things done. I'm still waiting for either of my docs (cardiologist or primary care) to call back since I left voicemail messages for them yesterday. I also posted a message for both of them on my patient portal.

Oops... I just looked again at the patient portal. There's a message for me from Keisha:

Good afternoon Mr. [blank],
We have received the documentation requesting a CPAP machine. The appropriate paperwork has been completed and sent to the medical supplier.

duh!

Based on Keisha's response, I must not have made sense when I sent a message to both docs on my patient portal. If you have more suggestions, let me know... here's what I sent:

Dr. [blank],
Thanks for helping me get the sleep study and CPAP machine. I really appreciate it.
I was having some difficulties getting the machine to work so I found a sleep apnea forum and asked a few questions. I also shared the stats from my new CPAP machine on the forum, and several people seemed concerned about them. They said my Obstructive Apnea is under control, but my Central Apnea events are very high. They suggested I may need an Auto Servo Ventilator (ASV) machine instead of a CPAP machine. The CPAP machine could cause Non Obstructive Hypopnea to transform into Cheyne Stokes Breathing. My periodic breathing and central apnea cannot be treated with a CPAP machine, they said, but an ASV will keep me ventilated properly. They seemed confident I could get the prescription/machine changed pretty quickly, based on the data from the new CPAP machine. I’m clueless, as usual, but they also said I need to call my cardiologist right away, and he would understand when he saw the stats. I put a call into Dr. [blank]'s office a little while ago, but I doubt I was clear when I left a voicemail message about all this... I'll send him a copy of this note, too, in case it helps clarify things.
Thanks again,
blank
P.S. I can send the report/stats from my CPAP machine by email if you would like to see them, but I'll need an email address.

[richb]

PoolQ,
Pretty unbelievable how fast you got things done. I'm still waiting for either of my docs (cardiologist or primary care) to call back since I left voicemail messages for them yesterday. I also posted a message for both of them on my patient portal.

Oops... I just looked again at the patient portal. There's a message for me from Keisha:

Good afternoon Mr. [blank],
We have received the documentation requesting a CPAP machine. The appropriate paperwork has been completed and sent to the medical supplier.

duh!

Based on Keisha's response, I must not have made sense when I sent a message to both docs on my patient portal. If you have more suggestions, let me know... here's what I sent:

Dr. [blank],
Thanks for helping me get the sleep study and CPAP machine. I really appreciate it.
I was having some difficulties getting the machine to work so I found a sleep apnea forum and asked a few questions. I also shared the stats from my new CPAP machine on the forum, and several people seemed concerned about them. They said my Obstructive Apnea is under control, but my Central Apnea events are very high. They suggested I may need an Auto Servo Ventilator (ASV) machine instead of a CPAP machine. The CPAP machine could cause Non Obstructive Hypopnea to transform into Cheyne Stokes Breathing. My periodic breathing and central apnea cannot be treated with a CPAP machine, they said, but an ASV will keep me ventilated properly. They seemed confident I could get the prescription/machine changed pretty quickly, based on the data from the new CPAP machine. I’m clueless, as usual, but they also said I need to call my cardiologist right away, and he would understand when he saw the stats. I put a call into Dr. [blank]'s office a little while ago, but I doubt I was clear when I left a voicemail message about all this... I'll send him a copy of this note, too, in case it helps clarify things.
Thanks again,
blank
P.S. I can send the report/stats from my CPAP machine by email if you would like to see them, but I'll need an email address.

Our primary concern is that you CHF would probably conflict wit an ASV machine and that the machine you now have is at best not helping most likely making the Cheyne Stokes Respiration worse and possibly creating an added risk to your health. You may or may not have Cheyne Stokes respiration when not on a machine. CHF can cause Periodic Breathing which in turn can be escalated to Cheyne Stokes Respiration by the machine. Very often CHF is directly associated with Cheyne Stokes Respiration. The bulk of research on Cheyne Stokes Respiration centers around CHF. Cheyne Stokes Respiration can be treated with an ASV machine BUT only if your left Ventricle ejection fraction is above 45%. Research has shown an increased risk of death if ASV is used in cases where the ejection fraction is below 45%. ResMed has put out a warning bulletin regarding this risk. The other issue is whether or not traditional CPAP adds to that risk as well. It probably has not been studied because CPAP is NOT used to treat Cheyne Stokes Respiration. Your concern should be and ours is that you may be at greater risk due to your present and possible future course of treatment without confirmation that your ejection fraction is above the acceptable level.

Rich

[Sleeprider]

PoolQ,
Pretty unbelievable how fast you got things done. I'm still waiting for either of my docs (cardiologist or primary care) to call back since I left voicemail messages for them yesterday. I also posted a message for both of them on my patient portal.

Oops... I just looked again at the patient portal. There's a message for me from Keisha:

Good afternoon Mr. [blank],
We have received the documentation requesting a CPAP machine. The appropriate paperwork has been completed and sent to the medical supplier.

duh!

Based on Keisha's response, I must not have made sense when I sent a message to both docs on my patient portal. If you have more suggestions, let me know... here's what I sent:

Dr. [blank],
Thanks for helping me get the sleep study and CPAP machine. I really appreciate it.
I was having some difficulties getting the machine to work so I found a sleep apnea forum and asked a few questions. I also shared the stats from my new CPAP machine on the forum, and several people seemed concerned about them. They said my Obstructive Apnea is under control, but my Central Apnea events are very high. They suggested I may need an Auto Servo Ventilator (ASV) machine instead of a CPAP machine. The CPAP machine could cause Non Obstructive Hypopnea to transform into Cheyne Stokes Breathing. My periodic breathing and central apnea cannot be treated with a CPAP machine, they said, but an ASV will keep me ventilated properly. They seemed confident I could get the prescription/machine changed pretty quickly, based on the data from the new CPAP machine. I’m clueless, as usual, but they also said I need to call my cardiologist right away, and he would understand when he saw the stats. I put a call into Dr. [blank]'s office a little while ago, but I doubt I was clear when I left a voicemail message about all this... I'll send him a copy of this note, too, in case it helps clarify things.
Thanks again,
blank
P.S. I can send the report/stats from my CPAP machine by email if you would like to see them, but I'll need an email address.

A suggestion for trying again.

Dear Dr. _____
It seems you did not understand my last correspondence. I am continuing to experience an AHI average of 35 events per hour, nearly all of it is central apnea, not obstructive. According to the machine, I am in Cheyne Stokes respiration over 86% of the time. I am certain that a CPAP is not the right technology for me. I understand that chronic heart failure patients have very different needs from obstructive apnea patients. If you are qualified to assist me to resolve my continuing severe untreated central apnea and Cheyne-Stokes breathing, please arrange to see me as soon as possible. If you are not qualified to treat chronic heart failure patients, please suggest a referral.

Thanks you,
Oldcoot.