The Virgin

[Gazhacks]

That made you look

I sometimes browse this forum and other just like it around the world and it always makes me chuckle (Laugh). It's like being on a roundabout, the same problems the same questions, leaks, wind, sore nose, bunged up the list goes on. I'm not complaining about it as I was there once just like a learner driver. I look back now with very fond memories of how it all started from the sleepy head shouts from the family and the nudges to wake you up and finally after years of fog the doctor pipes up, you could have sleep apnea.

This for me was met with some excitment, (so Im not a boring 40ish year old) Sleep tests, trip to the hospital, machines to wear in bed, it all seem quite unreal. What about you? how did it all start? This is not about success but about the beginnings, there are plenty of cases of success but what I like to hear about is peeps looking back to them early days, how they found out and at what point of life did it all start to make sense of why your.....zzzzzzzzzzzz OY! Wake up! effected your every day life before you know what you know today (ignorance is bliss?)

I couldnt wait for my sleep test and overnight stay at the hospital (Scotland) but the fun side of it soon wore off while laying there staring at the ceiling wires comming out of my backside (They could have been lol) Another thing, no one told me I'd have to pee into a bottle (Several times) When your not allowed to go your body likes to say otherwise (NURSE! Bottle) I think during the night I slept for about 90 minutes out of 8 hours. When morning finally and so thankfully arrived I was told that breakfast was served and the doctor has been called out so you will be notified of your results (The nurse told me I had sleep apnea shhh) What would you like for breakfast?

I was out the main doors in 30 seconds flat reaching for my fags as I went (Thankfully I quit not long after this) It was a very very very very (Yes we get the message) long night. A few days later I went back to Edinburgh to get my machine and have a run down of how it all works.

Do you still remember losing your virginity? sitting on the bed with your mask in hand, machine set up and all you have to do is pull the mask on. Now come on own up, who had a disaster that first time

I remember it well, leaks, noises, breathing problems ARGGGGGGGGGGHHHHHHHHHHHHHHHH LAUNCH CONTROL as the mask flies across the room

2YEARS ON

Perfection? not even close, still have problems some nights are better than other the only difference now is I laugh instead of scream, Im calm instead of stressed and if I have a problem I sort it out, no matter if its breaking any rules of my hospital as I believe that its my body and I know best.

So, what about you? Do you have a fond tale to tell to pass on to the newbies. I believe that the last thing a new start wants to here is how successfull we are but how we got there and how we first encounted problems and if you could give one piece of sound advise what would it be. For me it would be buy a mp3 player (IPOD) and some headphones because without this I would never have slept and dreamed of wearing my mask (Suba diving) and listning to whale song and sounds of the sea (Slept like a baby)

Whats your story?

[chunkyfrog]

About 20 years ago, I had all the classic symptoms.
Unfortunately, I was in an HMO.
My 'sleep study' involved giving me a sleeping pill, wiring me up,
and an hour later given a clean bill of health and sent home.--yes a FAKED sleep study!
To think of the years I wasted in a daze, due to GREED!
My first REAL sleep study was all night--on a bed instead of a gurney.
Many more devices attached to my head and torso.
The real thing--at last!
What a freakin' RELIEF!

[tetragon]

A bit over a year ago, I visited student health to see a doctor for the first time in years. I went to make an appointment about a relatively minor, but annoying issue. When I got there to make the appointment, I blanked on the reason, and saw a list of appointment types that couldn't happen on the same day. One of those types was a routine physical, and a train of thought popped up indicating that I should book a physical as my last tetanus shot had been twelve years ago. So I booked that type. In a follow-up to that appointment, the doctor told me that my iron levels were low, and that taking iron should stop me from feeling that tired within a couple of weeks. But I didn't feel tired.

A few months later, a few blood tests and follow-ups later, my doctor decided that I still looked tired, and that she could no longer blame that on my then-normal iron levels. At which point she started asking me about how I slept. As I didn't notice any problems, she didn't get very far. But over the course of the following month, I gradually realized that I wasn't sleeping all that well. I went back, after a bunch of questions she asked if I wanted a sleep study (without mentioning what was involved), to which I gave an ambivalent answer. As it wasn't no, she raced out of the room to grab the requisition forms and fill one out before I got a chance to look up "sleep studies".

When It finally came time for my machine, it could have gone worse. Sure I ended up phoning up my RT over how much the pillows hurt my nose less than a week after I got it. And I hauled my machine back to the DME, also less than a week later. That was my first machine change, ditching a brick. But outside of various little incidents like that, the worst part was all the tape in the studies. That stuff would leave me all red, blotchy, and itchy. And it would last for a few days.

[Gazhacks]

Its very strange how different things are, over here in the uk there is no profit to be had and we dont pay for anything medical so fake tests just dont happen. I here alot about DME? but havent a clue what or who they are. We see our doctors whenever we want and then get sent to the hospitals for treatment. No money or charges are made for anything including cpap or apap machines, masks etc. Strange worlds

[DoriC]

Gaz, just curious, is there a long wait to see a specialist? A nephew of mine who lives in London said that was a problem for him.

[Gazhacks]

One of the politicians favourite things cutting waiting times and shouting about it. It all depends on which part of the country or which country as the uk is made up of 4 Countries. I dont want to blow smoke as we too have problems here with waiting times and we all know that the medical treatment in the states is world class in some areas. London is the biggest area so will have the longest waiting times. You can cut this by going private but with costs of ten of thousands for treatment it can get very expensive.

From seeing my doctor to test and getting my equipment took a few months, hope this helps

[woodenbuick]

I went into the hospital for a lung biopsy. First night afterwards I was there they came with a cpap machine and a nose mask. I was loaded up on morphine and could care less that night.
Next night they brought me the current machine I have now and I took it home with me. MY o2 level was dropping to 59 % ad I was stopping breathing over 100 times an hour.

First night at home, my mask leaked like a sieve and I had an AHI of over 10. Since then (an also getting of the Vicoden and feeling better) I am below 2 most nights. But the first few
were a treat. Best part was when my dog saw me with the mask on she started barking at me.

[idamtnboy]

I here alot about DME? but havent a clue what or who they are.

DME is durable medical equipment. That includes everything from walking canes to motorized wheel chairs, from wheel chairs to hospital beds, from CPAPs to iron lungs, and everything in between and around. DME is anything of a medical nature that is used by a patient at home and is continuously usable. In other words, stuff you don't throw away after you use it like diapers, rubber gloves, etc. There are a few exceptions like diabetes supplies. The blood glucose tester is DME so the test strips that are used with it are also treated as DME.

DME is mostly always supplied by businesses who make that their business. They are separate from hospitals and doctors' medical clinics. That, in theory, is to avoid collusion and predatory pricing. DME suppliers get their pay from Medicare, insurance companies, and patients. It's the combination of those payers and their shares that are the subject of many of our discussions here. To characterize the payment system here in very kind and mild terms: It's a damn mess!!

[archangle]

One of the politicians favourite things cutting waiting times and shouting about it. It all depends on which part of the country or which country as the uk is made up of 4 Countries. I dont want to blow smoke as we too have problems here with waiting times and we all know that the medical treatment in the states is world class in some areas. London is the biggest area so will have the longest waiting times. You can cut this by going private but with costs of ten of thousands for treatment it can get very expensive.

From seeing my doctor to test and getting my equipment took a few months, hope this helps

I understand that the UK usually gives out non-data capable machines to everyone these days, jeopardizing your treatment and your health. They do that to the uninformed patients over here a lot, but the profit motive help the well informed among us fight it.

The US medical system is seriously broken and headed downhill rapidly. It's definitely not first class unless you're rich or have good insurance and know how to fight the system.

[Gerald?]

So, what about you? Do you have a fond tale to tell to pass on to the newbies. I believe that the last thing a new start wants to here is how successfull we are but how we got there and how we first encounted problems and if you could give one piece of sound advise what would it be. For me it would be buy a mp3 player (IPOD) and some headphones because without this I would never have slept and dreamed of wearing my mask (Suba diving) and listning to whale song and sounds of the sea (Slept like a baby)

Whats your story?

While the majority of people are going to come to this forum because they are struggling with CPAP, there will be a few (like me) who found this forum once they were sent off for a sleep study. I got to read about all the fun things that I was in for, types of machines, taping, ointments, cleaning etc. Obviously this helped enormously. I knew what to expect in the sleep study, I knew not to get a brick, I knew not to expect it to be perfect but that ultimately it would probably work out for the best.

I must admit that the potential for problems I read about did not give me a lot of confidence that CPAP would be successful for me.

However, everything went pretty much perfectly. Had my study, got feedback from the doctor next day, sent back again a day or two later to try CPAP. Felt refreshed even after a night in the sleep lab under CPAP. Rented a machine and mask, went home and slept beautifully from night one. Tried an pillows mask which was more comfortable and bought a machine. I've used them every night since for 2 years. My quality of life completely turned around, instantly.

The only hassle was a few months in when my machine did some funny stopping in the middle of the night. Found the answer here that it was a known fault, got it replaced under warranty and it has been fine since.

I wonder if amid the doom and gloom of all the problems here, whether for balance, it is worth having a few "Virgin" stories where everything clicked straight away.

[Kody]

Do you still remember losing your virginity? sitting on the bed with your mask in hand, machine set up and all you have to do is pull the mask on. Now come on own up, who had a disaster that first time
Whats your story?

Well since you asked, here's the story of my "first time", as much as I can remember since it seemed long ago now....

It was a dark and rainy night as I drove up to the place. Located in a strange part of town next to lawyers offices in a business park, but then again I guess they want to keep "this kind of thing" low key.
The door was locked since it was "after hours" you had to hit the button to be let in. I fully expected some big guy named Vinny to show up first, but to my surprise "She" appeared and let me in. All decked out in a cute white outfit, I pulled out my wallet in anticipation. However she told me to put it away, the insurance was covering all this. I thought to myself Wow! What a country I live in!! She took me into a room and wired me up, she was a real pro, her hands seemed like she had done this a hundred times before. After some small talk, she walked me down the hall to a bedroom where it was all going to take place. For some reason after this things got a little foggy, and all I can remember is some brief pillow talk. Then the next thing I remember it was morning, she came in turned on the lights and said I could leave. She seemed all business again, but I was curious and couldn't help myself, so with a boyish grin asked her "how did I do last night"? She said she couldn't really discuss it, but from the look on her face I could tell there was more to the story. She did say that someone would contact me with some kind of results which I thought was a bit odd. I then got dressed, thanked her and left. When I got home immediately had to take a shower, this chick must have been a bubble gum chewer because I found a bunch of it in my hair for some reason, and it was hard to get out!

[Gazhacks]

No doom and gloom just some light hearted reading, as I said it makes me chuckle looking back. As for non-data machines, the ones we normal get are Resmed which are all data capable its just that we are not allowed to look or download any data, I gather they would threaten to take away machine if you did. Not that I listen, its my data, my body and my illness and a stiff middle finger to the red tape

Loving the stories so far, the things we went through to get where we are today, I bet most of us are more educated than some of the medical staff. I still laugh at how excited I was when I was told I had O.S.A.

[chunkyfrog]

Ah, yes ---a stiff middle digit.
Now, if I could get these little green claws to articulate. . . .

[Gazhacks]

Do you still remember losing your virginity? sitting on the bed with your mask in hand, machine set up and all you have to do is pull the mask on. Now come on own up, who had a disaster that first time
Whats your story?

Well since you asked, here's the story of my "first time", as much as I can remember since it seemed long ago now....

It was a dark and rainy night as I drove up to the place. Located in a strange part of town next to lawyers offices in a business park, but then again I guess they want to keep "this kind of thing" low key.
The door was locked since it was "after hours" you had to hit the button to be let in. I fully expected some big guy named Vinny to show up first, but to my surprise "She" appeared and let me in. All decked out in a cute white outfit, I pulled out my wallet in anticipation. However she told me to put it away, the insurance was covering all this. I thought to myself Wow! What a country I live in!! She took me into a room and wired me up, she was a real pro, her hands seemed like she had done this a hundred times before. After some small talk, she walked me down the hall to a bedroom where it was all going to take place. For some reason after this things got a little foggy, and all I can remember is some brief pillow talk. Then the next thing I remember it was morning, she came in turned on the lights and said I could leave. She seemed all business again, but I was curious and couldn't help myself, so with a boyish grin asked her "how did I do last night"? She said she couldn't really discuss it, but from the look on her face I could tell there was more to the story. She did say that someone would contact me with some kind of results which I thought was a bit odd. I then got dressed, thanked her and left. When I got home immediately had to take a shower, this chick must have been a bubble gum chewer because I found a bunch of it in my hair for some reason, and it was hard to get out!

Sounds like something out of X-Files and Low key



This is my sleep clinic well its a whole hospital thats dedicated to sleep studies and the only time we get our wallets out at the hospital is to go shopping in the lobby for a sandwich and coffee.

..as for the sticky stuff in the hair I darent ask

[Gazhacks]

Surely there are more stories out there, come on dont be shy, How did you react when you was first told, what did you do and how was it that first night losing your virginity to cpap?