No Sympathy

[Wulfman]

Hang in there. Most of us were blindsided by this in some way. I had never even heard of Sleep Apnea prior to January of 2005 when my GP picked up on it and referred me to a sleep study. However, I went to the Internet as soon as I got home and started looking up everything I could find on Sleep Apnea......the condition and the therapy. I bypassed the local DMEs and got all of my equipment from CPAP.COM.....a data-capable machine, mask and the software to monitor my therapy. Somewhere in the process and before I started, I found this forum and it was comforting to know that I wasn't alone and that there are many who have experienced the same things before.

The morning after my first full night, I remember thinking......."One night down, the rest of my life to go."

Best wishes,

Den

[RafterRattler]

You're right, I did whine, because I was blindsided by the whole thing. I had a small operation and the doctor said I was snoring loudly and had erratic breathing while I was out. He sent me home with one of those at-home sleep test monitors. I did the deal, returned the machine, and it was out of sight, out of mind. A month later, I get a call from Apria Medical Store and was told to come in as soon as possbible. I went in and a technician opened 2 boxes and said "This therapy was prescibed by your physician and now I'm going to fit you with with this facemask to help you breathe at night" and he fit the mask over my mouth and nose and adjusted the straps. To this point I had never heard of sleeping disorders or CPAP. He then put the machine together, connected the hoses and plugged it in. He turned it on, and air began forcing its way into my mouth and nose. He pointed to charts on the wall showing what was happening to my airway and gave me lessons on how to operate the machine and put on the mask.Then he took my credit card, had me sign the agreement and asked me how I liked my CPAP machine and told me that I'm required to wear it every night . He then asked if I had any questions on the operation of the machine or the mask. I asked him "every night for how long?" He said that is totally up to you and your physician, but the data from your physician indicates it will be for some time. The whole appointment took just under 15 minutes. So, I picked my contraption and headed home to research this all online. If any of this was explained to me in advance, I probably wouldnt have been a whiner.

Geez. This is just inexcusable. What is it with physicians and DMEs that don't feel any responsibility to actually DISCUSS things with their patients? It's just another in a long list of reasons our healthcare system is so screwed up....

Mike

[WearyOne]

I've been extremely blessed with one wonderful son who will be 20 soon. Second year at a Christian college and doing great. I couldn't be happier for him, and wouldn't change a thing.

Complaining--we all do it at some point, and I really think it can help relieve frustration with a situation that's bugging us, or is difficult! It was kinda cute what your son said!

Pam

[alnhwrd]

Billy,

Yeah, it sounds like you kinda got shorted in the process. FYI, The whining lamp is always lit here, so you can feel free to vent, rant, pule, etc to your hearts content. Questions are welcome too. If you can, fill in your your profile so that everyone can see your machine and mask type. And, BTW, how are you doing? Are you sleeping and feeling better since starting CPAP? Click on the "Our Wisdom " light bulb at the top of the page to go to a collection of articles that will be very helpful for you. I know I found them so.

[DreamDiver]

Geez. This is just inexcusable. What is it with physicians and DMEs that don't feel any responsibility to actually DISCUSS things with their patients? It's just another in a long list of reasons our healthcare system is so screwed up....

Agreed.

Part of the problem is the system created by doctor's-office-as-business-model. Fifteen minutes is not long enough to really talk with a patient. Any patient. (I understand that some doctors live a high-stress life, but I'm not sure that five to fifteen minutes in exchange for a yacht payment is fair compensation, you know?)

Compare Charter Cable phone support with a doctor's office. With Charter, people who take your calls are reading a script. If your question goes in a particular expected direction, they'll give you the scripted answer. Most of them are from another country. English is not their first language, and worse, they have no real hands-on experience with a cable modem, let alone a router. If they can't answer your question, they'll hand you off to tech support. If they don't have a certain call turn-over rate, they get fired.

In the doctor's office, things are basically doing the same. You tell them the problem, they give you a scripted answer. They're often speaking another 'language'. Frequently, they tend to use a reduced set of social skills either to distance themselves from the patient emotionally or because they've spent way too much time in the stacks (books) since high school, preparing for a life of 'doctor-hood'. If it doesn't fit their knowledgebase, they'll hand you off to a specialist. If you don't ask questions, guaranteed - you'll be spending under fifteen minutes at any doctor's office. If they don't meet their quota - i.e. if they actually treat you like a real person - they get fired. (I've seen it happen.)

So they suspect something like OSA and pass you off to someone else who again only spends fifteen minutes with you and the whole thing starts all over again.

Nobody can afford to be a passive patient. If anything, this is a wake-up call. Do some initial research. Ask questions. Take notes, and don't be meek. Ever.

OSA can have awful effects on concentration, so if you're not comfortable doing this, or you're just too freakin' tired, consider bringing along a patient advocate with you who has researched some of this for you, knows your symptoms and medications well enough to confirm your answers, will ask questions knowledgeably, and translate and take notes for you if you can't understand. Whether being at a doctor's office or in a hospital or in any situation where you are getting medical attention, a patient advocate can be a lifeline. Whatever happens, it needs to be made clear to the doctor that you're not leaving their office until they've made everything clear to you.

[birdshell]

Excellent advice, DreamDiver.

I thought it might be helpful to share some of my techniques for saving time, thereby getting more individual time, from the doctors that I see. Most have appreciated and thanked me, but some have still had to have their own written paperwork. Too bad they don't always have enough room for my medications on their teeny little forms...but have about 4 lines for my address and phone.

1. I have a list of current medications on my computer's word processor. I print a fresh one for each doctor's visit. Sometimes, as in the case of my internist, I have found it good to print one for him and one for me.



2. For new doctors, I have a medical history similarly saved on my word processor. I use this as needed; sometimes the doctor's forms are detailed enough. In this case, I can quickly scan my printed copy and don't need to sit and recall the dates and names (medical ones) of surgeries.

3. I try to write a list of questions ahead, but sometimes end up doing so in the waiting room. Still, the list helps to focus and keep the conversation on track, and I can write answers on the page if I think it necessary.

4. I also discuss with my doctors the need for certain medications and alternatives. It is important to ask about side effects for me, and my internist gives me a good feel for the important ones. Fortunately, I have mostly accommodating doctors. It took me a long time to find them, but once I got started with a couple of them, they have referred me to more like-minded medical professionals.

That said, I also try to remember that the doctors are there for me during my time. If they are running late, I will understand that. I want them to spend more time with me when/should it be required. (I'm a fan of Star Trek, and rather favor Spock's credo: "The needs of the many outweigh the needs of the few.") That doesn't mean I'm a pushover, but rather that I try to understand their point of view.

It isn't possible for a doctor to keep to a tight schedule IF they spend the appropriate amount of time with each patient. These are the doctors that I want to treat me, so I tolerate waiting. I enjoy the time to read or organize myself; when teaching classroom, I would get all of my papers corrected quite often...always a boon! I ask the waiting room receptionist if there is an estimated time that I could expect to see the doctor, and sometimes leave. One of my doctors has his staff take cell phone numbers; they will call you about a half-hour before they expect that you will see him. Unfortunately, I don't live close enough to his office to be at home, but at least there is a shopping mall very close to the office.

I have been loudly arguing in the lobby of a certain DME's operation. This was truly deservedly so, and after the 3 events when that happened, I will not willingly return there. Sometimes, I believe, the medical facility is just TOO BUSY. This DME provider did a sterling job of introducing me to my CPAP and mask, took back a mask and loaned me others to get to one that would work for me, and then started to drop the ball. I suspect that there were new people messing with their system. They have a number of departments and I rarely talked to the same person twice. This does not bode well for patient relations. I can spend more time explaining what happened previously than I care to do.

Fortunately, I am able to choose where I take my insurance money. There are probably some limitations; there are, for example, second opinions required for surgeries. Still, when it comes to DME providers, I am at liberty to go to the one I choose.

I hope this adds to the conversation appropriately. Please be as ready to advocate for yourself as you need to be. Or, as DreamDiver says, bring an advocate, whether a family member or a friend, who is carefully chosen.

Karen,
Who learned the hard way

[sharon1965]

billy

i enjoyed your story...it reminds me of the many times i've asked my kids, "why did i teach you to talk?!", when they prove time and again that they are much smarter than i

i am the lucky mom of two extraordinary children who make me proud to know them every single day, who make my life an exciting adventure and who have taught me the true meaning of unconditional love

i am also lucky enough to work in the field of family support as a parent educator, which is almost as rewarding as being a parent

i hope you'll find the support and encouragement you need by coming back to the forum...so many of us were handed our equipment and sent on our way with barely a word, and we have all found our way here, thank goodness

best of luck!
sharon1965

[Billy6]

Billy,
...If you can, fill in your your profile so that everyone can see your machine and mask type. And, BTW, how are you doing? Are you sleeping and feeling better since starting CPAP? Click on the "Our Wisdom " light bulb at the top of the page to go to a collection of articles that will be very helpful for you. I know I found them so.

I'm tolerating my new machine pretty well. I need to take the facemask off a couple times a night to give myself a break. I realize it will take time to adjust to it, but I appear to have more daytime energy. I have to admit, I was surprised and not happy to learn today that the sleeping apnea will not be cured with this machine, and that I need to look at the usage timeframe in numbers of years, not numbers of months. (although I suspected it with the wording the technician used, such as severe, required to wear it every night, and some hideous number of times I stopped breathing that the test disclosed). To me, the whole process is not a big deal, and I hope it stays that way the more I learn about it

[Wulfman]

There will come a time when you won't want to sleep without it.

Den

[THier]

I was complaining last night at dinner about having to wear my new contraption, and my 19 year old started laughing. He said it was karma payback for the 2 years of making him wear the wire headgear his orthodontist fit him with, and that I'd get no sympathy for the next 2 years. He's right, the only thing I get form him are his tuition bills and empty gas tanks.

You know,,, depending on HOW he said it I'd say you probably have a pretty good kid there,,,

NOW,,

cut off his gas fund,,, and give him no sympathy

Tom

[socknitster]

Billy6,

What a weird way to find out you have apnea!

I knew apnea existed but thought it was only something that happened to overweight, middle-aged men. And I guess I figured if it was happening, someone would tell me, or I would realize it was happening myslelf. I was wrong on all counts. I was young, just a little overweight female and NO ONE had ever noticed me having an apnea until the doctor made the suggestion that it might be causing my symptoms. Then, of course, my husband was shocked to hear that I was choking and gasping and snoring all night long.

I'm really glad that despite your whining that you realize the value of cpap and have already seen some benefits! I know for me it has made the world of difference. I even recently went thru pregnancy on cpap, if you can believe it. And I'm healthier now than I have been for most of my adult life owing to the black machine next to my bed.

Good lucky to you and keep plugging at it!

Jen

[Billy6]

I was complaining last night at dinner about having to wear my new contraption, and my 19 year old started laughing. He said it was karma payback for the 2 years of making him wear the wire headgear his orthodontist fit him with, and that I'd get no sympathy for the next 2 years. He's right, the only thing I get form him are his tuition bills and empty gas tanks.

You know,,, depending on HOW he said it I'd say you probably have a pretty good kid there,,,
NOW,, cut off his gas fund,,, and give him no sympathy
Tom

He deliberately jammed the knife in, and then he turned it. Because this board seems to have decorum, I had purposely left out the part when he saw me in it the first time, he said (referring to the shape of the Quattro) "During football season, I never wore my cup that high". My only response was that "we'll see, I'm told this breathing condition is highly genetic."
And, I better leave it at that.

[echo]

He deliberately jammed the knife in, and then he turned it. Because this board seems to have decorum, I had purposely left out the part when he saw me in it the first time, he said (referring to the shape of the Quattro) "During football season, I never wore my cup that high". My only response was that "we'll see, I'm told this breathing condition is highly genetic."

You've gone one smarty pants on your hands there Wish I had that kind of sense of humor

You're probably right about the genetic component. BTW I always had sleep problems when I was younger but still had plenty of energy for sports... when I started college I stopped sports, put on a ton of weight, and the sleep issues got a LOT worse. So keep an eye on him

[Billy6]

He deliberately jammed the knife in, and then he turned it. Because this board seems to have decorum, I had purposely left out the part when he saw me in it the first time, he said (referring to the shape of the Quattro) "During football season, I never wore my cup that high". My only response was that "we'll see, I'm told this breathing condition is highly genetic."

You've gone one smarty pants on your hands there Wish I had that kind of sense of humor

You're probably right about the genetic component. BTW I always had sleep problems when I was younger but still had plenty of energy for sports... when I started college I stopped sports, put on a ton of weight, and the sleep issues got a LOT worse. So keep an eye on him

And one last thing you shouldn't do, is start the coffee and help your kid load his surfboard in the car, without first wetting down your hair. The headgear straps gives your hair that Bozo look, and the pressure marks are still on your forehead and face, which gave him great delight this AM.

Hopefully, the jokes are over. I did email my physician to be sure that this therapy does not cure my problem, and that my timeframe must be measured in years, and not months, even when I lose these 25 extra pounds. Hopefully he will respond, likely he won't, and I'll have to go over the whole thing when I see him next month

[echo]

And one last thing you shouldn't do, is start the coffee and help your kid load his surfboard in the car, without first wetting down your hair. The headgear straps gives your hair that Bozo look, and the pressure marks are still on your forehead and face, which gave him great delight this AM.

Try the pap-cap, it'll keep your hair in place As for the red marks.... I am sure my colleagues are thinking "is she the GIMP?"

Hopefully, the jokes are over. I did email my physician to be sure that this therapy does not cure my problem, and that my timeframe must be measured in years, and not months, even when I lose these 25 extra pounds. Hopefully he will respond, likely he won't, and I'll have to go over the whole thing when I see him next month

Well, at least it's not a wheelchair, or prosthetic limb, or hourly insulin pricking, or colostomy bag, or ...., for life - to put it into some perspective.
Sorry not trying to downplay your experience, but yeah, don't worry, it IS a life-changing experience, but we PROMISE you'll get used to it. Then it will seem as normal as glasses or bifocals! Good luck with the doc