Help requested for my daughter

[Catnapper]

Hi Everybody,

My daughter has just been diagnosed with OSA. I start this thread on her behalf hoping that the wonderful members here will post their ideas of things that can help her.

A young, uncouth, inexperienced man botched her initial sleep study. I hope she will share those details with you someday. I think I can say it was a pretty uncomfortable and unpleasant experience. The study did arrive at a diagnosis of OSA, with a titration study to be done this Sunday night. After the bad experience in the initial study she hesitates to subject herself to the titration night. Naturally her emotions jump all over the range that we all experienced when we had our own diagnosis of a life threatening disorder.

I was hoping that members here would offer her suggestions to prepare herself to face the next step, both with practical matters like take your own pillow, and with mental fixes to help her get ready for the titration study and deal with it. Then I also hope you will give her some of your wonderful ideas of how to make the therapy work for her. She has heard it from me, but I am just her mom. You all say it so much better.

I have told her how cpaptalk has helped so many people with support and suggestions, and most of all with understanding of what it is like to have OSA and all its ramifications. I feel sure that you will welcome her as you have so many others who need help.

Thanks on her behalf, and from me as well.

Catnapper

[Guest]

Tell her to get the same machine you have, then use the pressure prescribed to establish the range of the APAP. One night of discomfort in the long run is not really all that bad (easy to say, but most, if not all of us here, have done it, lived through it, and gotten over having all those wires etc. taped on the body). Besides, if she is compliant with the treatment, she will likely feel better.

TM

[NightHawkeye]

Catnapper, since the second night at the sleep lab is largely just for titration, why not tell her she could save herself a lot of grief and aggravation by just getting an APAP. Have the doc write the script today, order it from CPAP.com, have it delivered overnight, along with a couple of success-oriented masks (like Swift and Activa), and she'll be on therapy tomorrow night.

That's just about what I did, and insurance covered it for me. Her situation may be different though. Just a suggestion.

Regards,
Bill

[blarg]

I'm 23. Feel free to have her send me a PM. Her life isn't over.

I ended up just not opting to do a titration study, but that's definitely not for everyone.

You really are a wonderful resource here. At least you already have been through this. If she doesn't want to talk to mom about it, then I'd be happy to address any concerns she has.

[Guest]

Catnapper,
You have been around the forum long enough to give her valuable help.

I would think you first tell her to browse this and other forums and read for herself to get up to speed on her condition.

What has SHE done to start this process? It is her problem and she needs to start somewhere. I seriously doubt shs will benefit if she does not.
Are you waiting for postings and then telling her about them?

This reminds me of the moms who sell girl scout cookies for their daughters.
Get HER involved.
tomjax

[ufo13]

Catnapper:

I agree with NightHawkeye and Blarg, and as tomjax says give her YOUR advice (who's word would she trust more?) I have been on cpap for over 12 years and in my opinion once the DX is made, as it has, I would do as NightHawkeye and Blarg suggest and titrate herself with the guidance of her Physician. This will be much easier for her IMO, as well as much more cost efficient! I also would make it known to the powers that be, wherever the sleep study was done, of the incompetant treatment she received-period!


All the best,

Steve,
ufo13

[Alisha]

Catnapper, since her sleep study was done by an incompetent and I don't know if her test was accurate enough to register centrals, leg movements, etc., it might be best for her to have the titration in a (perhaps a different) sleep clinic.

If it were me, the first thing I would do is insist on talking directly to the doctor, explaining what happened during the PSG, and insisting that I get the titration study done by a different lab if at all possible, and most important, THAT THE UNCOUTH YOUNG MAN NOT EVEN BE PRESENT AT THE LAB THAT NIGHT. I would tell the doctor to make certain that I get first-class attention by a competent, experienced lab tech with excellent bedside manners. I would tell the doctor that I'll be sending a report card on him/her as well as a report card on the clinic and lab tech to the powers that be so that they will be held accountable. She can use the following for the reports:

http://diagknowsis.org/reportcard/diagK ... rtCard.pdf

In addition to taking control of our treatment, we need to stand up for ourselves when we receive substandard treatment.

Maybe no one else will agree, but sometimes we have to let it be known that "I'm not gonna take it anymore!"

I also agree with you that many times daughters will listen to others when they are not inclined to listen to their mother.

Regards,

Alisha

[Pad A Cheek]

Hey there daughter of Catnapper,

I understand your first sleep study was not the best experience of your life. There are technicians out there that are much more compassionate and competent than the one you apparently had.
Now that you had the bad experience, I can tell that your mother will not let that happen again. At some labs they may even let her come with you and sleep in a nearby room. Getting treated for Sleep Apnea will be one of the best things you will do for your future health. We look forward to getting to know you and share your concerns as well as your achievements in your treatment.

I wish you the best of luck on your titration test. It does not have to be the same kind of experience.
I look forward to chatting with you sometime.

Here is to a great Titration

Karen Moore

[Goofproof]

If it were up to me, i'd use your equiptment to do the test at home on my own. If I thought she had apnea, I would get a new like machine from Cpap.com for her, with you script, unless her ins is really good. Jim

That way their would be no medical tracks to follow her, as far as future Ins.

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com

[MikeRobert]

Catnapper,

Just want you to know I am hoping that you and your daughter can get this worked out. Sleep Medicine Specialist should definately be better than what you described here. If you want PM me for cell contact.
MikeR

[SleepySandy]

Hi Catnapper,

I'm sorry your daughter had such a terrible experience with her first study.

If she decides to do the titration, I would also consider a different sleep lab as others have suggested. Depending on how traumatic that first study was, just being in the same lab might make it difficult for her to sleep.

Regardless of the location of the titration study, she could request a female tech if she would be more comfortable. I didn't know you could do that and I lucked into a female, but she told me lots of female patients request female techs. Maybe that would help.

Sandy

[Linda3032]

Some excellent suggestions here. I too would be really tempted to forego the titration study and just get an Apap. She has you and the forum to help with any problems -- plus her doctor. She could always go back and get the titration study done if she felt she needed to at a later date.

I also had female techs, and even at my age I think I would have felt strange if a male tech were entering my room at night. I would think most sleep clinics would have both male and female techs.

[SleepySandy]

And I would think the sleep clinic would ask female patients if they want a female tech when they make the appointment.

I'm inclined to agree about the APAP, though based on what I've read here about using APAPs for home titrations. I'm actually not convinced my CPAP pressure is right and I HAD a titration. As others have said, she could always go back for another study later if it seems her therapy isn't working.

[t-bone]

As many of you know, Catnapper is my mother. In turn, she is asking for ideas for my sister.

Mom and I have offered encouragement, have suggested that she read this forum, and offered to discuss our own experiences with her. However, sometimes it's easier to hear these things from others. Reading your ideas will reinforce ideas Mom and I have already offered her.

Knowing my sister, she will take charge of this as she does with other facets of her life. I hope she joins this forum--she's a lot of fun, and she'd make solid contributions to our forum.

Mom may have baked a few cookies, but she never sold them for us. I cannot imagine her starting now.

I thank all of you who have offered kind and compassionate thoughts and ideas. You are wonderful people. Keep up the good work!

[Rabid1]

Dear Daughter of the Cat,

Your mom was kind of vague about your experience in the sleep lab, but it's obvious it wasn't pleasant. Please don't let that unpleasant experience detract from the real important issue of your OSA.

You've been dealt a hand that is both good & bad. Of course we'd ALL prefer not to have OSA, but we do, and we have all found our own ways to deal with it. How lucky you are to have been diagnosed at an early age before the OSA took its toll on your body & mind. Us old farts <except blarg> usually didn't find out before at least some damage had been done

'ol Rabid1's gonna write a prescription for ya. Are you ready?

Every night at bedtime: Breathe in, breathe out. Repeat as neccessary.

Call my office for refills.

You go girl!!!!!

Rick