http://www.sleepapnea.org
Check it out. Some great information for first timers like myself. Pass it on.
CPAPNEA
American Sleep Apnea Association
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Procrastinator
- Posts: 55
- Joined: Sun Jan 23, 2005 10:30 pm
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Dave Hargett
- Posts: 79
- Joined: Sat Feb 05, 2005 12:09 am
- Location: Chicago suburbs
- Contact:
Thanks for the compliments on the American Sleep Apnea Association website at http://www.sleepapnea.org.
We welcome all visitors looking for information. We'd also love to have as many of you as possible consider joining the ASAA as a member and receive our quarterly newsletter. Your annual dues and/or donations will help us increase awareness and help us advocate for patients more effectively.
Dave Hargett
Chairman
American Sleep Apnea Association
We welcome all visitors looking for information. We'd also love to have as many of you as possible consider joining the ASAA as a member and receive our quarterly newsletter. Your annual dues and/or donations will help us increase awareness and help us advocate for patients more effectively.
Dave Hargett
Chairman
American Sleep Apnea Association
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naskedmechanic
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Dave Hargett
- Posts: 79
- Joined: Sat Feb 05, 2005 12:09 am
- Location: Chicago suburbs
- Contact:
Hi Dave
Hi Dave,
So when did you start being a hosehead; what's your story? (perhaps you've said and I've missed it) And what takes you up at such a late hour posting to our forum? (guess same could be asked of me, huh?)\
(smile)
Linda
So when did you start being a hosehead; what's your story? (perhaps you've said and I've missed it) And what takes you up at such a late hour posting to our forum? (guess same could be asked of me, huh?)\
(smile)
Linda
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Dave Hargett
- Posts: 79
- Joined: Sat Feb 05, 2005 12:09 am
- Location: Chicago suburbs
- Contact:
Linda asked me to share some of my story, so here goes. Read on if you are interested.
While looking back now with a great deal of hindsight, I probably had sleep apnea at age 20 in college (1970) when I was already snoring like a freight train and had developed hypertension high enough that I was not drafted.
Daytime symptoms didn't start bothering me until around 1990, when I began getting sleepy in the afternoon or early evening riding home on the commuter train from Chicago's Union Station. Over the next few years I began to feel more tired, began to get up more frequently during the night to urinate, and my snoring was getting worse. My wife was beginning to observe the pauses in my breathing, but neither of us had a clue about sleep apnea.
In the fall of 1993 I read a story in the Chicago Tribune about sleep apnea; a story that was really promoting a hospital sleep lab and its medical director, but which talked about obstructive sleep apnea. I was pretty sure that was what I had, but my wife wasn't so sure she agreed with me. Six months later, I got around to asking my primary care doc about sleep apnea. He informed me that he knew nothing about sleep, but could refer me to someone who did -- he named the doctor in the newspaper story!
I heard about a talk some doctor was giving on sleep apnea in April, but I was too tired that night to go out and hear him, so I was still muddling along, feeling worse and worse. At this point, I was suffering from "sleep apathy" -- too tired to do anything about fixing my sleep problem!
In June, the sleep doctor from the newspaper story came to my town and gave a talk about sleep apnea. Billed as an hour -- 30 minutes talk; 30 minutes Q & A -- he was still answering questions 2 & 1/2 hours after he started. At age 45 my wife and I were the youngest people in the room, with most of them over 60, with the wives bringing in their 2nd husband who was beginning to show the same symptoms that hubby #1 had been showing before he died. That's a little bit of over-generalization, but that was definitely the impression from that group!
Sometime in July I got an appointment with the sleep doctor -- it really cost me because I made the appointment without a referral and my insurance company made me pay the whole amount. Best medical bill I ever paid, though!
We both agreed I had sleep apnea -- now we just had to get the sleep study done. Unfortunately I couldn't go through his sleep lab; that hospital was not available under my insurance, so I had to go elsewhere. I found a place on the way home from my job and made an appointment in August for my diagnostic study (a full night diagnostic). It was a terrible night, as many of us had, where we feel we don't sleep at all. In my case they thought the oxygen sensor was defective as an alarm kept going off. They tried it on all ten fingers, a few toes, my ear lobe - that was keeping me awake! Turns out that I hit as low as 52% and was below 80% oxygen saturation most of the night. My AHI was 82, with 17 apneas and 65 hypopneas per hour.
About a month later I'm in the sleep doctor's office and he is reviewing the report from this "other" sleep center. He started me on CPAP that night at 8 cm (on an emergency basis) and we did a titration study later that moved my pressure to 13.
Within 4 nights I was feeling much better and had cut out the long afternoon naps on the weekends. It was probably a month or so before I felt totally better, but I saw results very quickly and that encouraged me to keep going with treatment. I've actually been 100% compliant ever since the first night. Keep the mask on all night long and never ripped it off, ever. A few nights without the machine only when the power was off.
While I was feeling pretty good, I got invited to attend a meeting about starting up an A.W.A.K.E. support group in the following January (1995). I missed the first meeting but made it to the 2nd one and got hooked on learning more about apnea. The two ladies who started the group (from the sleep doc's office and a DME company) both changed jobs in the summer so I stepped up to be the "front man" for the group and the members haven't let me sit down yet. Our group just had our 10 year anniversary.
Then a new DME sponsor invited Dr. Frankie Roman from Ohio to come speak to an A.W.A.K.E. group in the area. Frankie was working with Dr. William Dement on a grassroots effort called WakeUp America to lobby Congress for funding for the National Center on Sleep Disorders Research.
I was fired up after the talk and while driving Dr. Roman to his hotel volunteered to help. That got me involved with the American Sleep Apnea Association and the American Sleep Disorders Association (now the American Academy of Sleep Medicine - the sleep physicians professional organization), who were jointly planning a "rally" on Capitol Hill in May of 1996. I wound up being one of three sleep disorders patients chosen to speak at that rally, which we called the Great American Sleep Walk. I was the apnea speaker and others spoke on their narcolepsy and their restless legs syndrome..
Following that I began to do some local public speaking and continued to run my support group and worked with the American Sleep Apnea Association office as an informal advisor. In 2002 I joined the board of the ASAA as a patient member and was elected Chairman in 2004.
I spend a lot of volunteer hours working for the ASAA, answering questions on message boards and at my own website and assisting in the start up of A.W.A.K.E. groups wherever I can. In August of 2003 I started a second group at a sleep center closer to my home, so I now coordinate two different A.W.A.K.E. groups.
So, to make a long story short, I was diagnosed in 1994 after having had symptoms for 24 years prior. I'm a compliant CPAP patient, an ardent supporter of the apnea support group concept (the A.W.A.K.E. Network of the American Sleep Apnea Association), a public speaker and sleep activist, doing my best to promote awareness.
If you have managed to read this far, I hope you weren't too bored!
I welcome any comments or questions you may have about my story or about the American Sleep Apnea Association.
Dave
While looking back now with a great deal of hindsight, I probably had sleep apnea at age 20 in college (1970) when I was already snoring like a freight train and had developed hypertension high enough that I was not drafted.
Daytime symptoms didn't start bothering me until around 1990, when I began getting sleepy in the afternoon or early evening riding home on the commuter train from Chicago's Union Station. Over the next few years I began to feel more tired, began to get up more frequently during the night to urinate, and my snoring was getting worse. My wife was beginning to observe the pauses in my breathing, but neither of us had a clue about sleep apnea.
In the fall of 1993 I read a story in the Chicago Tribune about sleep apnea; a story that was really promoting a hospital sleep lab and its medical director, but which talked about obstructive sleep apnea. I was pretty sure that was what I had, but my wife wasn't so sure she agreed with me. Six months later, I got around to asking my primary care doc about sleep apnea. He informed me that he knew nothing about sleep, but could refer me to someone who did -- he named the doctor in the newspaper story!
I heard about a talk some doctor was giving on sleep apnea in April, but I was too tired that night to go out and hear him, so I was still muddling along, feeling worse and worse. At this point, I was suffering from "sleep apathy" -- too tired to do anything about fixing my sleep problem!
In June, the sleep doctor from the newspaper story came to my town and gave a talk about sleep apnea. Billed as an hour -- 30 minutes talk; 30 minutes Q & A -- he was still answering questions 2 & 1/2 hours after he started. At age 45 my wife and I were the youngest people in the room, with most of them over 60, with the wives bringing in their 2nd husband who was beginning to show the same symptoms that hubby #1 had been showing before he died. That's a little bit of over-generalization, but that was definitely the impression from that group!
Sometime in July I got an appointment with the sleep doctor -- it really cost me because I made the appointment without a referral and my insurance company made me pay the whole amount. Best medical bill I ever paid, though!
We both agreed I had sleep apnea -- now we just had to get the sleep study done. Unfortunately I couldn't go through his sleep lab; that hospital was not available under my insurance, so I had to go elsewhere. I found a place on the way home from my job and made an appointment in August for my diagnostic study (a full night diagnostic). It was a terrible night, as many of us had, where we feel we don't sleep at all. In my case they thought the oxygen sensor was defective as an alarm kept going off. They tried it on all ten fingers, a few toes, my ear lobe - that was keeping me awake! Turns out that I hit as low as 52% and was below 80% oxygen saturation most of the night. My AHI was 82, with 17 apneas and 65 hypopneas per hour.
About a month later I'm in the sleep doctor's office and he is reviewing the report from this "other" sleep center. He started me on CPAP that night at 8 cm (on an emergency basis) and we did a titration study later that moved my pressure to 13.
Within 4 nights I was feeling much better and had cut out the long afternoon naps on the weekends. It was probably a month or so before I felt totally better, but I saw results very quickly and that encouraged me to keep going with treatment. I've actually been 100% compliant ever since the first night. Keep the mask on all night long and never ripped it off, ever. A few nights without the machine only when the power was off.
While I was feeling pretty good, I got invited to attend a meeting about starting up an A.W.A.K.E. support group in the following January (1995). I missed the first meeting but made it to the 2nd one and got hooked on learning more about apnea. The two ladies who started the group (from the sleep doc's office and a DME company) both changed jobs in the summer so I stepped up to be the "front man" for the group and the members haven't let me sit down yet. Our group just had our 10 year anniversary.
Then a new DME sponsor invited Dr. Frankie Roman from Ohio to come speak to an A.W.A.K.E. group in the area. Frankie was working with Dr. William Dement on a grassroots effort called WakeUp America to lobby Congress for funding for the National Center on Sleep Disorders Research.
I was fired up after the talk and while driving Dr. Roman to his hotel volunteered to help. That got me involved with the American Sleep Apnea Association and the American Sleep Disorders Association (now the American Academy of Sleep Medicine - the sleep physicians professional organization), who were jointly planning a "rally" on Capitol Hill in May of 1996. I wound up being one of three sleep disorders patients chosen to speak at that rally, which we called the Great American Sleep Walk. I was the apnea speaker and others spoke on their narcolepsy and their restless legs syndrome..
Following that I began to do some local public speaking and continued to run my support group and worked with the American Sleep Apnea Association office as an informal advisor. In 2002 I joined the board of the ASAA as a patient member and was elected Chairman in 2004.
I spend a lot of volunteer hours working for the ASAA, answering questions on message boards and at my own website and assisting in the start up of A.W.A.K.E. groups wherever I can. In August of 2003 I started a second group at a sleep center closer to my home, so I now coordinate two different A.W.A.K.E. groups.
So, to make a long story short, I was diagnosed in 1994 after having had symptoms for 24 years prior. I'm a compliant CPAP patient, an ardent supporter of the apnea support group concept (the A.W.A.K.E. Network of the American Sleep Apnea Association), a public speaker and sleep activist, doing my best to promote awareness.
If you have managed to read this far, I hope you weren't too bored!
I welcome any comments or questions you may have about my story or about the American Sleep Apnea Association.
Dave
Dave
Dave,
All I can seem to say is, Gulp! Wow!
....
But then, I've never been accused of not being chatty.......
Thanks so much for your story. Not only is it great hearing the sleep apnea story but also the advocacy work you did and do, showing how ordinary people can make a difference, no matter what the cause. I guess the key in volunteer work is to just do what interests you, and you'll never know where it might lead you.
Thanks again. Most interesting.
Linda
All I can seem to say is, Gulp! Wow!
....
But then, I've never been accused of not being chatty.......
Thanks so much for your story. Not only is it great hearing the sleep apnea story but also the advocacy work you did and do, showing how ordinary people can make a difference, no matter what the cause. I guess the key in volunteer work is to just do what interests you, and you'll never know where it might lead you.
Thanks again. Most interesting.
Linda
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maskedmechanic
Hey Dave,
I noticed there is no link to cpaptalk.com on your http://www.apneanet.org website or http://www.sleepapnea.org. Perhaps we are worthy? What do you think? This community wants to help more sleep apnea sufferers, just like you. We will help them if they come.
I noticed there is no link to cpaptalk.com on your http://www.apneanet.org website or http://www.sleepapnea.org. Perhaps we are worthy? What do you think? This community wants to help more sleep apnea sufferers, just like you. We will help them if they come.
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Dave Hargett
- Posts: 79
- Joined: Sat Feb 05, 2005 12:09 am
- Location: Chicago suburbs
- Contact:
I know my own site is VERY dated. Just no time to fix it up. A link to CPAP Talk is definitely planned for there.maskedmechanic wrote:Hey Dave,
I noticed there is no link to cpaptalk.com on your http://www.apneanet.org website or http://www.sleepapnea.org. Perhaps we are worthy? What do you think? This community wants to help more sleep apnea sufferers, just like you. We will help them if they come.
As a recognized non-profit, our board policy does not let us link to sites related to commercial entities -- I have to pursue this one a bit more cautiously with our board. However, in replies to individual patients I will certainly reference this forum, now that I know about it.
Geez, folks, I just found about about this board on Friday of last week!
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Janelle
I think a lot of us become sleep apnea watchdogs once we are diagnosed. It seems like such an easily detected disease, that you'd think more people would be diagnosed, but more and more I hear about so-and-sos friend who loves to go to the movies, but falls asleep 15 minutes into it. Or the husband who snores so funny, he snorts or burbles and, will stop for a while and then start up again. Or the person who's had a bypass for heart problems but is a heavy snorer, has high blood pressure and is overweight, and refuses to quit smoking.
I have a friend who took her husband to the doctor. She is an RN and was very aware of sleep apnea. She has fibromyalgia herself, which is often accompanied by SA. Her husband was overweight, smoked and had high blood pressure. He's been on CPAP a year now at 16!!! using the same mask and never had a leak. I told him about the forum, but he's says he doesn't need it as he's never had any problems. Except he needs a new mask 'cause his dog chewed up the seal on the other one. He uses a nasal mask and I was totally surprised he had no leak problems as he has a full beard and moustache. Ah, well, if it ain't broke don't fix it, huh Dave?
I have a friend who took her husband to the doctor. She is an RN and was very aware of sleep apnea. She has fibromyalgia herself, which is often accompanied by SA. Her husband was overweight, smoked and had high blood pressure. He's been on CPAP a year now at 16!!! using the same mask and never had a leak. I told him about the forum, but he's says he doesn't need it as he's never had any problems. Except he needs a new mask 'cause his dog chewed up the seal on the other one. He uses a nasal mask and I was totally surprised he had no leak problems as he has a full beard and moustache. Ah, well, if it ain't broke don't fix it, huh Dave?
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Guest