Help requested for my daughter

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
CollegeGirl
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Post by CollegeGirl » Fri Mar 02, 2007 8:39 pm

I resent that remark, Rabid1! LOL I don't think I qualify for old fart status at 28.

To CN's daughter,

I had a horrible botched sleep study, too (from the sounds of it, though, not as bad as yours). I didn't want to go back for my titration either. But I did it, and even thought the titration was botched, too, that was what I needed to qualify for my insurance picking up the tab on my machine, so that's what I did. I started out with CPAP, and when I didn't do well on that, traded it in for an APAP. Make sure you have a different tech - heck, as someone else said, go to a different sleep lab if you think that might be necessary - but in the end, it's only one night, and it allows you to then take charge of your own therapy - and if you're anything like your mom and brother, that's exactly what you'll do. Feel free to PM me if you want to talk.

--CG

Machine: M-Series Auto
Mask: Headrest
No humidifier
On the hose since 2005.

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Rabid1
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Post by Rabid1 » Fri Mar 02, 2007 8:51 pm

CollegeGirl wrote:I resent that remark, Rabid1! LOL I don't think I qualify for old fart status at 28.
Present company excepted
Wake me up when this is over...

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birdshell
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Post by birdshell » Fri Mar 02, 2007 11:38 pm

Catnapper,

It is very gratifying to me to know that there is another mother such as mine out there. She would move heaven and earth to get her children the appropriate medical care.

It does not appear to me that your daughter is not willing to participate in her own care, but I happen to know that you have been trying for a while to have her see whether or not she inherited the "family" apnea, such as you and T-bone both have.

I believe that this may be at the root of your interest, as you finally convinced her to go for a study. Of course, she was put off by the incompetence of this young man; had she been a veteran of CPAP studies, he might have been less influential. However, she wasn't and should have been treated with more empathy and professionalism.



Dear Catnapper's Daughter:

Now that the first study is done, and apnea has been diagnosed, it is of the UTMOST importance to get adequate treatment. This is vital to good health, and this is no light thing. There are many members on the forum who have suffered some of the lasting effects of avoiding treatment.

Alisha has given you some wonderful advice and I am sure that you could benefit from taking control of the titration situation in the ways that she has suggested. Quite often, I have found that the doctor has no idea of what is happening behind the scenes.

For me, the sleep study was easier on the first night, but I believe that will be the reverse for you. My sleep lab was very welcoming and empathetic; we had a connection established by the tech and myself such that I was so very glad to see her the second night. There MUST be someone similar to her at your lab; I do not know if there is another lab that you could visit in your area, but whatever you do:

PLEASE have the study! You really and truly do not want to suffer some of the consequences of NOT having adequate treatment. Further, would it be fair to expect your family to help and support you had you not used the xPAP treatment which you need (based on your first study)? What if the situation were reversed? How sad would it be for you to be helping the others in your family, watching them suffer needlessly from complications that could have been avoided had they only used a fairly easy solution?

Click Here to Read a Thread Citing Some of the Complications of Ineffective Treatment

I actually looked forward to the titration study, as it meant that I would find out a solution to the 12-14 hours of sleep per day that I required. I hated sleeping more than half of my life away. (Maybe I am just too social to miss out on 3-1/2 to 5 hours of LIFE per day!)

Some people have the best sleep in years at the titration study. I did not experience that, but I have also developed a slow, steady, and significant improvement in my energy, mood, and thinking over the past 11 months. I figure that my sleep debt is being repaid slowly.

It has taken a bit of time, but I have also been able to lose weight again. Previously, my body hadn't been giving me the "stop eating" signal. Now, I do have it back, and the increased sleep quality has produced the hormones leptin and ghrelin in amounts creating that effect.

Serotonin is also produced by your body during sleep. An imbalance, or lack, of serotonin working in the brain can cause depression. Apnoiecs may be unable to produce enough serotonin during their ineffective sleep.

I have mentioned only a very few of the negatives resulting from a lack of treatment; and only intimated some of the positives. Here are some of the best parts of being a “hosehead”, IMHO:

1. Sleep less.

2. Feel better, or happier.

3. Have increased energy.

4. Get to come to this forum and read for HOURS and HOURS and HOURS.

5. Meet some very intelligent and caring people. (Who would think that you would receive a diagnosis of apnea and make new friends as a result?)

6. Realize that YOU are also a very intelligent and caring person, as you answer postings.

7. Read the newbie questions that are asked and answered repeatedly, but we have all been there and somehow someone remembers that and always answers nicely.

8. Test your creativity with mask decorating contests.

9. Test your creativity in finding new solutions for treatment problems using such items as: pantyhose/tights legs, fishing line, swivel snaps, twist ties, Velcro, safety pins, thread, Teflon tape and PVC pipe for plumbers.

10. Find some really cool accessories for your xPAP and mask, some made by our Forum Folk.

11. Discover features in new masks that you will like to try, and maybe to reject.

12. In your particular case, join two other family members in a bond that is lifesaving, and improves the quality of all of your lives. (Hey, just the avoidance of most snoring is a boon.)


I am sure that I have not included all of the pluses; yet, there are some pretty awesome ones. Oh, I forgot Live Chat—where many of us spend the hours that we no longer spend sleeping…LOL!!

In conclusion, I hope that your titration goes very well. Whether it is better or mediocre or worse than your first study, realize that this is something that you do for yourself. It is no different from any other medical condition. If you are a diabetic on injectable insulin, would you really not do so because you just find it to be too hard to inject yourself? Of course not!

Do you plan to avoid mammograms, blood tests or tetanus vaccines for the rest of your life? How much fun are any of those? Believe me, the world of the xPAP is fairly easy to handle and is MORE THAN WELL WORTH THE HASSLE.

I really look forward to meeting you. Your mother and brother have really supported your ability to care for yourself and others, as well as your fun-loving nature. Please hurry and join us in our club. It is really a new world waiting for you to be its conqueror.


Be kinder than necessary; everyone you meet is fighting some kind of battle.

Click => Free Mammograms

amos
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Post by amos » Sat Mar 03, 2007 11:34 am

Dear Catnapper's daughter,

Grace, peace, and love from our home to yours.

Please allow me to introduce myself. I go my the monicker of "amos" on this forum. Your Mother has been very nice to me on this forum and chatroom enough to adopt me as her online son, even though I am much older than she is. However, I am not sure if T-Bone has accepted this arrangement yet or not.

I, too, had very bad experiences at my sleep study and titration test. I think that sometimes people who do repetative jobs, such as sleep techs and grocery store check out clerks, tend to forget that each patient or customer is an individual with individual needs, hopes, expectations, and fears. Too often we are little more than just another task to accomplish.

Much of life does consist of getting over fences, and I am confident that you will overcome this one as well. I am not happy that I have had cancer surgery and now must have an MRI twice a year, or that I have a bad heart that must be monitored, or that I have sleep apnea and must wear a silly mask to bed every night. The alternative to this lifestyle is living the life of a shut in or even death. Life is too precious to give in to passing set backs.

Your Mother and brother have come to accept cpap therapy with a good amount of loving kindness and humor. In the end, I am sure that you will too. Just think what interesting family reunions ya'll will have!

I pray that the Good Shepherd will see you safely through this valley of shadows that that you will emerge in the sunlight of good health.

"amos"

The Rev. Dr. J. Larry Amos


Guest

Post by Guest » Tue Mar 06, 2007 3:30 pm

hi everyone, catnapper's daughter here,

i just wanted to thank you for your input and in general for the outstanding patience, encouragement, support, and especially knowledge that you share with anyone who shows up to participate.

keep well. i'll sign on someday. have the titration study scheduled for tomorrow night - gotta be lucky to have it on sleep apnea awareness day (woo hoo!)...

when i expressed concern that i would suffocate in my sleep before getting treatment, my good pal told me, "if anyone can hold their breath all night, you can - just think, you've been doing it for years!" turns out if you do the math based on my original sleep study, i hold my breath somewhere between 2 1/2 and 3 hours per night (of 8 hours). she's right. i'm a champ.

looking forward to actually sleeping.
take care, y'all.
daughter of the cat


Guest

oh, yeah. i did tell the original lab about the chaw-chewer

Post by Guest » Tue Mar 06, 2007 3:42 pm

hey, i forgot the good news.

yesterday the sleep lab where i had the original study done called me to discuss coming in for titration. when i explained that i had some issues with the way i was treated i was put on hold for an administrator.

when David came on the line he asked what was up, and i explained that although i had several examples of the lack of professionalism my tech displayed, the most bizarre one was when he came into my room with a golf-ball sized wad of chaw (chewing tobacco) in his cheek. being willing to make the point, i asked him "what's in your mouth?" he told me it was "bad stuff" and then, [get this!] he said, "I shouldn't have come into your room with it in my mouth, but I didn't want to take it OUT of my mouth because then I'd have to wash my hands."

i did explain to him, and later to his supervisor, that perhaps the ONE thing that a person enduring a medical procedure never wants to hear is, "i didn't want to wash my hands." the administrator was super nice, and said to me, "I am beside myself." He said all the right things as far as I was concerned, but I am still scheduled to go somewhere else for titration.

it's all good. now that i know, i am all over it.

thanks mom.
thanks everyone.


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laurel
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Post by laurel » Tue Mar 06, 2007 4:46 pm

catnapper's daughter,

I'm so glad that you got in for the study, even if it sucked (or should I say "blew"? But that's the titration, isn't it? With the air from the machine and all). Your quality of life will be so much better after you get the right gear and get going with treatment.

And hooray for talking to the administrator of the sleep lab-- I doubt the uncouth guy will be around there much longer (and rightly so from the sound of it). You'll have helped spare others an unpleasant study. Other folks aren't so lucky as you as to have family who have been through this and know a whole lot about it. Plus this community of fine helpful folks. I can imagine someone having a bad experience and never going back!

I'm 35 and I wish I'd gone in for a study years ago (was diagnosed in September 2005) as I've battled all the usual things that go along with sleep apnea: being tired all the time, weight gain, depression, anxiety, other fun stuff. Getting good sleep makes such a huge difference!

Now if I have an off night (like I did for a few days recently when there was a hole in my hose-- heh-- and I didn't notice right away), I can really tell. And I wonder how on earth I survived all those years without a CPAP. It's a wonder I did survive!

In addition to being healthier now, I also actually enjoy seeing my sleep stats with software and finding just the right machine and mask and all that stuff. I geek out about it. Some enjoy that stuff, other are content to find one machine and mask that works and go with it.

I just wanna say-- treatment isn't just good for you, but it can be kindof fun in its own way and you can meet some cool people because of it. Hang in there. It's a bit weird at first and annoying in some respects at first, but it gets easier.

Good luck!

Laurel Krahn | http://www.laurelkrahn.net
OSA diagnosed: September 1, 2005
Untreated AHI: 86.7 | AHI with CPAP: .7 - 3.0
Titrated pressure: 13 | Pressure set to: 9

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rested gal
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Post by rested gal » Tue Mar 06, 2007 5:00 pm

Welcome to the board, Cat's kitten!

You, your mom, and your brother not only share OSA, but you also share the same good sense of humor and fun writing style. Sorry you've got sleep apnea, and sorry your first trip to a sleep clinic involved a "chaw chewer"....but glad to see you here.
ResMed S9 VPAP Auto (ASV)
Humidifier: Integrated + Climate Control hose
Mask: Aeiomed Headrest (deconstructed, with homemade straps
3M painters tape over mouth
ALL LINKS by rested gal:
viewtopic.php?t=17435

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birdshell
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Post by birdshell » Wed Mar 07, 2007 9:03 am

Laurel and Laura, you both have expressed some excellent points. See, Kitten, what you will get to experience here? Although, you probably already have some experience here; there are many, many interesting people here and the previous two are a great example.

Laura, I especially liked the "Cat's Kitten" moniker, and hope the Kitten will be able to use that in her chosen one somehow--although, Kitten, what if you are not a huge cat fan? I guess we will just have to wait to see what you choose!

Now, down to the vital statistics. You have done the absolutely right thing in confronting the issue of the lab tech, IMHO. I cannot imagine anything more unprofessional than chewing tobacco while working. That HAS to be almost as bad as smoking in such an environment. That one action of yours, alone, may have rescued untold numbers of apneoics from a lifetime of noncompliance. Had you not had a supportive and experienced mother and brother, what would YOU have done, after all? I'm guessing that it would at least have been a bit of a struggle to force yourself to the second sleep study.

Since you have now taken care of the others (as well as yourself), I am joining the legions who are happy about your titration. Especially since you have had a somewhat poor PSG experience, here is hoping that your second is a really nice and extremely rewarding first hosehead night!

It is so sad that you had such a bad first experience, but at least you had the PSG done to establish your need for xPAP. NOW, just wait until you experience the first day of the rest of your life!

I know what you mean about waiting, as the fact of one having apnea severe enough to require treatment is established. Then, how responsible is it to send someone out into the cold, cruel world without an xPAP and mask? However, I have heard of some who have been bad enough that they HAVE been sent home with a borrowed set-up...I'm not sure if that means that the lab was really great, or the patient that needy.

I hope that all of your friends are as supportive and reassuring as the one about whom you have spoken. I needed a touch of humor today, and am very glad to hear her take on the situation. You certainly should be able to handle holding your breath, although you should not have to do so. However, if you are not now a pearl diver, perhaps you should consider that vocation. Alternatively, I hear that there are now folks who dive simply to stay under longer in competitions.

Link to the Free Diving Apnea Mania Site

Maybe you should consider that as an avocation? (Sorry, I just couldn't resist joining in the fun.)

Keep us posted, please, and it was simply lovely to find your postings above. I'm sure I speak for many others, as well as myself, when I say that we will be thinking of you tonight.

I am looking forward to welcoming you as a full-fledged, practicing, increasingly energetic hosehead, much as I was welcomed by the Forum Folk nearly a year ago.

Sincerely,
Karen



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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration

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Be kinder than necessary; everyone you meet is fighting some kind of battle.

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Catnapper
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my thinaks

Post by Catnapper » Thu Mar 08, 2007 5:17 am

Hi Everyone,

I want to thank you for the replies that supported and encouraged my daughter. I also want to thank the people who read about the study problems and remembered their own first study and diagnosis difficulties. That brings us all together in the spirit of this forum.

As for your take on my thread tomjax, I never sold the cookies for my kids. I did offer them support and encouragement when they started something new. That little Girl Scout with the curly red hair and sparkly brown eyes really did love a challenge. Be glad you were not on her cookie route, tomjax, or you would still be eating the Samoas she unloaded on you.

Fair Warning! Don’t mess with my daughter!

Catnapper