Y'all Saved Another One

[RAINSUX]

I've been on CPAP since December. I discovered this forum after I started, and I am amazed at what I have learned here and how helpful and supportive everybody is. I mentioned to my sister that she should talk about this with her GP the next time she saw her, since I'm pretty sure our Dad died from this. She lives alone, but recently went on a trip with a friend, who told her that she was making a lot of strange noises at night, stopping breathing, and then gasping for breath. Sound familiar?

I had her read Sleeping With the Enemy, and she recognized many of her own symptoms.

She went to the GP, armed with my warning that many aren't very familiar with SA. This one had family members with SA, and was VERY familiar. After listening to my sister's symptoms she immediately scheduled her for a sleep test. This went GREAT! She got a better night's sleep than she had had for years, and they even let her sleep with the machine for a couple of hours after the test was over. She didn't have her normal headache when she woke up, and she was hooked! She got her equipment in a few days and got lucky with a mask with a perfect fit the first time.

The rest is history. She was wearing it all night after about the third night, she has no more headaches, she sleeps less time and feels more rested. She thinks her attitude is better at work, and my son talked to her and reported that she sounded happier than she has for years. She's only had the machine for about two weeks!

The bad news. I'm giving her the software and card reader for her birthday. She had a followup visit with her sleep doctor and I told her to find out how he felt about patients monitoring themselves. He told her ABSOLUTELY NOT. THIS IS ILLEGAL! This is a prescription and patients are not to have this information. Some people even make changes to the machine settings, and Respironics will come down hard on anybody they catch doing this. Otherwise he was very pleased with her progesss and admired her enthusiasm with it, commenting on how many of his patients fight it. Her AHI is already under 5, so she probably won't need to change the settings. She just won't tell him that she's watching it every day. How sad that an othersise good doctor would have this attitude.

I want to thank all of you for her help, even though you have had no direct contact with her. Your contact has been eith me, and what I have learned here has no doubt prolonged her life, as it has also done for mine. This kind of sharing is priceless!

Sam

[snoregirl]

Sam,

Get her the software and reader anyway.

Also have her get a copy of her prescription at the min and copies of her sleep studies if possible. With a doc like that telling untruths and trying to scare her, she may at some time want to buy a new machine without involving him/her and she will have all she needs with the prescription.

Great job. I only wish I could be as successful with my brother. He snores like you wouldn't believe (or maybe you would) even with his tonsils out as a child. He wakes up in the middle of the night etc......

[RAINSUX]

Thanks! It's already bought, and I'm pretty sure she asked for copies of the sleep study. I'll follow up on that.

Sam

[Babette]

Thanks Rainsux! You just gave me an idea. My sister is thin, healthy, VERY athletic (she trains horses for a living), and has suffered for years with headaches. Not enough NORMALLY to incapcitate her - just enough for her to invest lots of time and money in every quack remedy out there - magnets, aromatherapy, mystery herbs, etc.

I'm going to mention she might look into the possibility of Sleep Apnea. She's so willing to try every other thing - maybe she will try cpap. And maybe it might work for her!

Cheers,
Barbara

PS - Den, if you run into her at the Piggly Wiggly, you might mention it...

[JeffH]

I liked the "this is illegal" part. What BS.

What kind of shape do you think my heart is in after taking Vioxx for four years and Actos for three? All "legal" BTW.

[Slinky]

... and Respironics will come down hard on anybody (*patients) they catch doing this ...

Snort. Choke. RESPIRONICS will, will they? (The * is mine).

[Bamalady]

hehehehe, Slinky. Think we will have to go underground with our software?

RAINSUX-

I love success stories! Your sister is lucky to have you in her life.

[seamonkey21]

what garbage. ugh. makes me sick.

The bad news. I'm giving her the software and card reader for her birthday. She had a followup visit with her sleep doctor and I told her to find out how he felt about patients monitoring themselves. He told her ABSOLUTELY NOT. THIS IS ILLEGAL! This is a prescription and patients are not to have this information. Some people even make changes to the machine settings, and Respironics will come down hard on anybody they catch doing this.

[BrianRT]

Yeah, I could imagine the Respironics Gestapo knocking down doors in the middle of the night

[JimW]

Start drawing up plans for a CPAP raid shelter...