How Important Has CpapTalk.Com Become In Your Life

[Michele1234]

This website has been helpful for me, since I'm doing everything on my own. I find the search function on this site can provide more and better answers than most DR's can provide. I have learned a lot and I'm sleeping 100 times better than I have in the past 8 or 9 years.

[SeaPappy]

I echo everyone's praise of this site. I was using cpap for seven years before stumbling across this site. I learned more here in seven minutes than is imaginable.....my eyes were opened and my life was changed.
Thanks to all who helped....ya'll are some terrific people.

[SaltLakeJan]

[quote="kteague"]
Hi Kathy, Your post is sensitive and beautifully phrased, and I cannot think of a better goal than to:


But more than all that, when someone is struggling, I want to be part of the team that holds them up. I feel like I owe it to those who have and continue to support me to not leave it all on them. I know it does my heart good to see others joining the ranks of the support network. There is a Bible statement that holds a principle that I think of in broad context (no offense intended). "To whom much is given much is required." Still haven't given nearly as much as I've received here. Since I'm ever learning, looks like I may never get away from here. Not that I want to.[/quote

Jan

[Trinity101]

Jan-
It's nice to"meet" you,too-if you ever see me around at night, feel free to PM me and we can chat for a few if you want.
I also am so grateful to everyone here who has helped- and I want to be helpful to others. As a retired RN,I remember the adage used in nursing school, and after, when we learned a technique- "Watch one,Do one,Teach one" I feel that I am still in the "watch" (or learn) stage mostly, and am of course, Doing every night as I use my machine-so I am slowly starting to offer my still very new experience in the few instances I feel that I can contribute.
"See ya"
~joan

[araminta]

While i was one of the first kids on the block to get an email account back in 1995, I've never joined an on-line forum before this one. AFter I was diagnosed with sleep apnea a few months ago, and freaked out at the sight of a cpap machine and masks... I immediately went searching for information. Luckily, I found this website, and somehow it seemed infused with such authenticity and integrity and collective knowledge and empowerment.

Since I joined, i find myself eager to check in and see what new issues have come up. I'm so often impressed with the respect and care given to even the most naive of questions. It's helped me accept my new situation with a greater sense of humor (love some of those avatars), and ease the day to day struggle with equipment.

I'd love to see the plethora of mother-in-law rants disappear, and the spirit of respect continue OT as well as on topic...

But I'm grateful to be in contact with this community of whacky, smart and empowering individuals.

[Captain_Midnight]

Jim writes...I found out about the Encore Pro program for my machine, and how to set it up. After that I learned how to make my treatment more effective, by stopping leaks and adjusting my pressure to what's best for me, not by the guess of the sleep lab, based on a number out of the hat, and three hours of bad sleep...Later, I learned about the other brands of XPAPS, and what they bring to the table, in software and treatment. That way I could better make informed judgements about my treatment. I try to help others with what I have learned where I can.

And Jim, that is difficult to improve on. I have learned much; and, using this info, I've optimized my therapy (gradually, over time) to an AHI so low that OSA researchers would be highly interested. (And, I want everyone on this forum to enjoy the same success as do I.)

This forum offers apnea patients a practical prospective from other, veteran patients who have determined by trial-and-error the most effective treatment pathways and considerations. This includes typical problems in initial xPAP therapy (like leaks and too much humidity), using nightly data feedback to sneak up on optimum setup, realizing that a wide-open APAP Rx (e.g. 5-20) is a prescription for failure, and other challenging rites of initiation. I credit the fine folks on this site for any success I gained.

My big interest is in OSA symptoms, and the phenomenal range of sequelae that result from chronic intermittent hypoxia. Often, visitors will post some symptoms here, and ask if it's possible that they could be related to sleep apnea. More often than not, they might be; and a med dx is in order. I'm always happy to post some info about one possibly connected health issue or another; and I'm continually amazed at some of the success stories, and how xPAP relieved some nasty sets of symptoms.

I try to visit the site each day. If I see a new and especially interesting research article, I'll post it (although Rooster usually finds these first).

Thus, this site and the super folks who hang out here daily helped me make correct analyses which led to major changes to my therapeutic setup, and that means much to me. Now, if I can give someone a hand, I'm happy to do so, as it is returning a favor so to speak.


.

[Marietjie]

....... Significantly ............ Mentally and Physically ........ I don't take nonsense from no-one anymore ! ! !

[slapmeawake]

I check this site numerous times a day just like my email. It has become so important to me. I am still learning and all the wonderful people who post teach us all new and wonderful tricks to help make our journey easier. If you have a question and post it someone will immediately come along and have some advice for you. My DME has suffered though because now I am not the uninformed patsy I was before this site came into my life. But I must say, you all helping me has helped them. Sometimes they actually want some information from me that I have seen posted on here. Awesome!! I still have to watch them like hawks though lol!!I will keep coming everyday as long as this site is here. Thanks again to all the "experts" who help us everyday.

[Catnapper]

Cpaptalk has meant different things to me over time. At first it was like an oasis in the desert, a place for relieving my intense thirst for more information to make cpap work for me. I read every word of every post whether I understood all of it or not. (There often are very technical topics here that are tough for a newbie!) I found answers to problems I had and learned to avoid problems before they occurred by learning what to do in advance. I felt like I was holding on here to a lifeline. I slept poorly and was often here during the night when I couldn't sleep. (I still miss rustynail. Does anyone else remember her? She was always in chat in the middle of the night back then.) The kindness and helpfulness I found here made it possible for me to continue with cpap in spite of the miseries I felt.

As time went by, things improved for me but I still feel connected here. My therapy goes well and I know that is so because I continue to check my data. I know if problems occur that someone here will help me. I don't post much, but I read what is happening with everyone. The personality of the forum changes as its population varies. As an example, I was happy to see yardbird again after his long absence - what fun he is! The regulars keep things going strong, supportive, fun and helpful, and the newbies add a new flavor or spice to add interest and variety.

It's never boring here, and you can drop in at your convenience for as long or short as you like. It is a great place to be. I wish I could be more helpful. I like being a member of this community.

Catnapper - Joanie

[6PtStar]

This has been a wonderful site. My PCP found my sleep apnea after way to long. He knew very little about OSA, even admitted it to me. I never talked to my sleep Doc. I got a copy of my sleep study but had no idea what it meant. I wandered through the maze for almost 8 months before I found this site, It and the great people on this board made all the difference in my life. I still can't beleave how the information from the caring people here made such a difference so quickly. I still come here every day and still find something I did not know after almost 3 years. I also try to stay around and help others the way I was helped when I came. Thank You to all the fine folks here, I appreciate all your help!! Thank you Johnny for making this possible.

As a final testamony of what this board means to me. As some of you know, I recently had a heart attack on November 19. When I woke up after 3 days the first thing I asked my wife for was to bring my laptop to my hospital bed so I could contact my friends on this board. You mean a lot to me.

Jerry

[kteague]

Jerry, when something happens in the life of one of own it certainly doesn't feel like reading about a stranger. I for one was so glad you were well enough to be able to pay us a visit. I'm always appreciative when a family comes in to tell us what's going on. Just had to chuckle at this thought... We've talked about carrying a card with our OSA diagnosis on. I just envisioned, "In case of emergency please contact cpaptalk.com".

Nearly 3 years ago I was admitted thru the ER and kept for 24 hours to check out my heart. I had asked my grandson to log into chat and let them know, as at that time I almost camped out there since I rarely really slept except in snatches. I was surprised when a nurse came in with a piece of paper with a phone number on it. Someone knew what area I was from and tracked me down, telling me to call if there was anything they could do. That touched me.

About Rustynail, I asked about her a year or so ago and was told she had moved from across the ocean back to the states. I sent her a PM but it's still in my outbox. Left it there just in case. She happened to be a cpappro user, and was ok with it.

[Ruby Vee]

I discovered cpaptalk.com after my diagnosis and titration study, before I got the results of the titration study or the machine. I found it by Googling "sleep apnea' while sitting in the ICU one night, watching my patient struggle with sleep apnea. She had the diagnosis of sleep apnea, and swore up and down to everyone she was using her CPAP at home -- but had no idea how to set up her machine or even that it was missing some parts and wasn't functional. When the respiratory therapist and I set up one of the hospital's machines for her, she swore that OUR 8cm of pressure was more than HER machine's (probably correct, since her machine wasn't functioning). Evidently the 8 cm had been prescribed 100 pounds in the past, and she needed about double that now. Meanwhile, she had hypertension, transcient ischemic attacks (precursors to stroke) and heart failure. She refused to keep the mask on, insisting that "I don't really need it." The cardiologist shook his head sadly, saying that had she just been compliant with her CPAP, she might have avoided all of the other medical problems including the possible heart transplant we were working her up for.

I vowed that night that if I needed CPAP, I'd figure out how to make it work for me because I sure didn't want to wind up in that woman's shoes!

CPAP is still a struggle for my husband and me both -- we're still newbies and still trying to figure out how to make it work. I struggle with mask leaks, and while he seems to have that under control, his AHI still ranges from 10-13 and he's still complaining that he's so tired . . . I've learned so much from this group, starting with what to look for in equipment (mask, mask, mask), how to make the equipment work for me, and how to deal with some of the emotional baggage. Although I have to admit that my anxiety about having my husband see me wearing the equipment is mitigated by seeing HIM wearing his!

That you, everyone for your help and for your support and encouragement.

[SaltLakeJan]

Hi Mar,
I'm personally glad you found the forum. Our similar/disimilar ways and thoughts have been interesting to me. For such being a recent member, You have learned a vast amount - amazing your doctors with your knowledge is an accomplishment. You amaze me too. '
JAN

[SaltLakeJan]

Hi Capers,
Greetings to you in Aus from USA. You have an advantage over us. CPAP got its beginning in Aus. and Major Companies have their Home Offices there. It is amazing that through the use of the internet, people from all over the world have access to Cpaptalk.com., and all the benefits that come from membership.

You list your ResMed machine as being similiar to the Res Med Elite. I really like my machine. It preforms consistantly, however I have the h4 RedMed Humidifier. I used it primarily in the winter, and it didn't always perform. Now I have been advised to change to the Fisher & Paykel. Is that another Aus company?
Good luck to you.

Jan

[robertmarilyn]

Hi Mar,
I'm personally glad you found the forum. Our similar/disimilar ways and thoughts have been interesting to me. For such being a recent member, You have learned a vast amount - amazing your doctors with your knowledge is an accomplishment. You amaze me too. '
JAN

Thanks Janie,

And you too About learning a lot in a short time...I was already not feeling well and then to get on CPAP and immediately have to deal with severe acid reflux and aerophagia, I was forced to learn words I had never heard of before. But at least I was able to learn about those things quickly by coming here. And I didn't have to 'just get used to it' like a doctor told me to do. I feel much better now even if I'm still working on my tiredness. This place is great!
mar