first visit to VA after getting machine still have ?'s.

I went to the VA today for my appt with pulmonary after I got my machine (Remstar M Series, auto cpap w/nasal pillows). He said he was not supposed to tell me my AHI or how to find it myself on the machine. He was just supposed to tell me if therapy was going well. My AHI was 1.2, which, I think is pretty good. I've been on CPAP for for 4 months. My sleep study showed something called "combine A+H of 63. That was back in January. I'm not sure what this all means. He wouldn't program my machine to show AHI or leak rate but showed by how I could get the info myself by using a few tricks.

I told him I was taping my mouth. He didn't say anything. He then said he was ordering a hybrid mask for me. I am guessing mouth taping is frowned upon.

The guy was nice. I had some specific questions regarding things like nasal stuffiness and some other stuff but he was more interested in compliance. I don't have a doctor for cpap as such, just the primary guy at the local clinic. In fact, the sleep study was ordered by the endocrinology dept. So, I really don't know who to ask about specifics and what this all means. He just told me he'd see me in a year and if I needed equipment to call him and if I needed machine parts to call prosthetics.

I know this message is long, but I'd like to know what the numbers mean. (By the way, I saw the leak rate (I think) and it said something like 125. Does that sound right? Also, is a one year hiatus between visits normal?

Thanks for listening one and all and thanks for your help in the past.

thimarine,

They really leave you to sink or swim, don't they.

I went back to look at some of your previous posts. Was touched as much by your present post as by this one:

viewtopic.php?t=20591

"It took me two years to get my machine from the VA. The local clinic requested the study in 2005. I had the first sleep study in late 2006 and then one with a cpap machine in Jan 2007. I got my machine April 14, 2007. The sleep study had to be done at IU Med Center because the local VA no longer has a sleep study room. My next follow up is in August. However, I have a sleep tech I can call. He gives practical tips but I can tell he is stressed out. He ordered a nasal pillow mask for me when I got a sore on my nose from my full face mask. He told me to read the literature or go online to figure it out. He was nice enough but I could tell he wanted to get me off the phone. There's just too many of us and not enough funding. Budge was 1B short this year but the administrators gave themselves a $30m bonus. No political statement intended. That's just the way it is. I don't know how it is in other areas. I can only speak for my area which is Indiana/Illinois."

Two years from the referral for a study until getting a machine. Whew.

And a first mask that chewed into the bridge of your nose.

I don't understand what the reasoning is behind:

(what the pulmonary doc told you) "He said he was not supposed to tell me my AHI or how to find it myself on the machine. He was just supposed to tell me if therapy was going well."

and

"He wouldn't program my machine to show AHI or leak rate"


"but showed by[me] how I could get the info myself by using a few tricks."

Thank goodness for small favors.

"The guy was nice. I had some specific questions regarding things like nasal stuffiness and some other stuff but he was more interested in compliance."

YOU are the nice one...to be so patient about it all.

Good thing you found your way to this message board and have been doing what it takes to help yourself as much as possible.

I've sent you a PM. You can get to it by clicking the "Message" button at top right of this page.

Good luck!

Oh, the "combined A+H of 63 is an "AHI" (apnea/hypopnea index) of 63. Meaning you had 63 apneas and/or hypopneas an hour on average during your sleep study. That's severe Obstructive Sleep Apnea. Good thing you are using your machine.

thimarine wrote:I went to the VA today for my appt with pulmonary after I got my machine (Remstar M Series, auto cpap w/nasal pillows). He said he was not supposed to tell me my AHI or how to find it myself on the machine. He was just supposed to tell me if therapy was going well. My AHI was 1.2, which, I think is pretty good. I've been on CPAP for for 4 months. My sleep study showed something called "combine A+H of 63. That was back in January. I'm not sure what this all means. He wouldn't program my machine to show AHI or leak rate but showed by how I could get the info myself by using a few tricks.

I told him I was taping my mouth. He didn't say anything. He then said he was ordering a hybrid mask for me. I am guessing mouth taping is frowned upon.

The guy was nice. I had some specific questions regarding things like nasal stuffiness and some other stuff but he was more interested in compliance. I don't have a doctor for cpap as such, just the primary guy at the local clinic. In fact, the sleep study was ordered by the endocrinology dept. So, I really don't know who to ask about specifics and what this all means. He just told me he'd see me in a year and if I needed equipment to call him and if I needed machine parts to call prosthetics.

I know this message is long, but I'd like to know what the numbers mean. (By the way, I saw the leak rate (I think) and it said something like 125. Does that sound right? Also, is a one year hiatus between visits normal?

Thimarine,
I certainly understand your frustration with the VA, having myself been one of their "mushrooms." They do prefer to say little, and refuse to educate the afflicted about their condition(s) -- on record, anyway. At least you happened to draw a decent med-tech who gave you some support by divulging the "doorway" to get to the data.

Rested Gal is one of the many brighter bulbs on this board, and as I've seen, has helped many a stranded soul find the enlightenment of solid answers. Of course, many here do just that, offer their experience and knowledge.

For the VA, one-year between checks on your xPAP therapy is normal. As a note: It took me years to get a sleep study done through them and about a year to get my first CPAP machine. And they refused to give me any answers, claiming that such knowledge would only "cause [me] unnecessary stress" and "confuse [me]." <eyeroll> Yes, they said those things to me.

Good luck with your therapy.

Congrats on getting a useable machine, now it's time to get the software and reader for it. You don't need their input when you have your own. You've gotten the hard part in the past now. Jim

Were it not for the kind people on this forum and the words of encouragment and wisdom I've received, I really would have been left to sink or swim. I appreciate everyone's kindess and help.

I am not well informed on this subject, but would it not be better for Uncle Sam to pay for a private health insurance for our military veterans and just close down the VA?

rooster wrote:I am not well informed on this subject, but would it not be better for Uncle Sam to pay for a private health insurance for our military veterans and just close down the VA?

No! and a lot of the V.A. is already contracted out. The problems with the V.A. lie with the president and congress. I guess that covers most other of our problems in this country too. Jim

Goofproof wrote:.......... The problems with the V.A. lie with the president and congress. ...........

And that will improve????

rooster wrote:I am not well informed on this subject, but would it not be better for Uncle Sam to pay for a private health insurance for our military veterans and just close down the VA?

Well, for starters, many or most VA doctors are in training when they handle all but the most difficult and seriously injured or afflicted patients. The VA trains doctors, and as part of their payback they work in servitude for x-number of years.

Sure, they're loosely overseen by certified doctors, but that's like letting the flight attendant fly the plane while the pilot, co-pilot and navigator go out to lunch.

Yes'r, it's true.

The VA runs in cycles. Right now, with a democratic congress, there was a 20 billion increase which the pres threatened to veto. The vote was 420-9 though, so he didn't. The money went to hire additional caseworkers and added local addiction clinics and shrinks for the local clinics. I don't mean to turn this forum into a political discussion. I live with the system the way it is. I was drafted during Viet Nam but enlisted in the Marine Corps instead. Since getting out, I have seen the quality of the VA go through several changes through several administrations. I'm happy for what I get and, if I have to wait so an active service member can recieve treatment for wounds, I am more than happy to do so. It is what it is. I am grateful that my tax dollars (and yours) can be returned to me in some manner.

We persevere, just like the people on this forum, through improvising and adapting. This is a great group and I appreciate all the help you've given me. I hope to do the same for someone someday after I get the hang of this.

Well put! Kind of what I meant, but better said. V.A. isn't meant to replace health care, it's got a special mission to fill. Jim

Goofproof wrote:.......... The problems with the V.A. lie with the president and congress. ...........

Well said, GoofProof!! I recently lost two Viet Nam vet brothers-in-law (one also a Korean vet) and I know the care they did/didn't receive. I also know the BILLS Tri-Care tried to collect when both died. One in a local hospital since the local VA had no ER capabilities and the other BECAUSE VA transferred him to a non-VA hospital. The second was a Bronze Star plus several Purple Hearts. And they were both PROUD career Leathernecks.

For crying out loud they are squabbling now what health benefits, if any, they'll "allow" our National Guard serving, and dying or wounded, in Iraq. Like our police and fire protection, the government praises them as heroes during action and then promptly de-classifies them (as heroes) financially as soon as the "action" passes. Government knows no true gratitude.

COLOR ME RED-FACED!!! My brother-in-law was awarded the Silver Star NOT the Bronze Star as I said in my previous post!!! I don't know where in the devil my head was. I know better than that! Sheesh! I can't even blame that one on fat fingers.