Patient involvement

jonnyboy · Post by **jonnyboy** » Thu Jun 30, 2005 6:26 am

Hi all

I have been reading a lot of the posts on this forum and have been wondering how much involvement people have in their treatment?

I was given a cpap machine and full face mask 2 months ago and was told nothing about the settings and have been given a follow up apointment after 6 months use.

I also had to drag it out of the consultant that I stopped breathing aprox 70 times an hour.

Does anyone have any recomendations on what questions I should be asking?

I am not having much luck with cpap and need to get something sorted quick becasue I am afraid if I go untreated for to long I could loose my driving license.

Thanks

Jon

ahujudybear · Post by **ahujudybear** » Thu Jun 30, 2005 6:36 am

First of all, you need to have copies of your sleep studies. (Not just the typed summaries, but all the charts showing heart rate, sleep level, arousals, apneas & hypopneas, etc.) Then make an appointment with your sleep Dr. to go over them and ask questions.

It's your life. You have a right to know this stuff.

- JB

REM · Post by **REM** » Thu Jun 30, 2005 10:20 am

What type of problems are you having with your CPAP? Perhaps the users on this forum can help with them.

Questions you should ask your sleep doc.

1.) How many times do I stop breathing per hour
2.) What is the effective pressure to treat my OSA
3.) Are there any central apneas I should be concerned about
4.) According to the results of my study are there any other sleep disorders you may see in the results of the study. Such as RLS.
5.) According to the download of my machine does the prescribed pressure seem to be treating my OSA well.

I would try to get a follow up appointment now, and not wait for the six month period. A lot of sleep docs see their patients between 4 and six weeks after CPAP is started.

Harmony · Post by **Harmony** » Thu Jun 30, 2005 11:23 am

Jon

My Doc spent a total of about 2 minutes with me when he told me I had SA.
After that apt I got on line to do some research and was blessed to come across this wonderful group of people. I have learned so much by reading all the posts. Use the advice from all on the posts for great ammo when you go to the Doc. I got copies from the Doc, but was only given the summaries. I will be going back to get copies of the other records that JB suggested. I would also suggest asking for copies of any information that you provided when you had your studys done. I had to fill our questionnaires when I had mine done. When I read my summaries there was information that sounded like it was someone elses report. Some of the info wasn't even close. If I gave them the info that was there I am a bigger fog head than I thought. Don't be afraid to want to know what is going on with you and your health. Who better is there to look out for yourself than you?

Harmony

jonnyboy · Post by **jonnyboy** » Thu Jun 30, 2005 12:56 pm

Thanks for the advice guys, when I get to speak to the doc next I will find out some more info. Unfortunatley 6 months was the earliest they could give me so may have to wait a while.

Thanks

Jon

TXKajun · Post by **TXKajun** » Thu Jun 30, 2005 3:44 pm

jonnyboy wrote:Thanks for the advice guys, when I get to speak to the doc next I will find out some more info. Unfortunatley 6 months was the earliest they could give me so may have to wait a while.

Thanks

Jon

Another thing you need to learn quickly is that you have to stick up for yourself and insist on YOUR rights! This is/could be a life-threatening condition....YOUR life! Learn to be a persistent, pain-in-the-butt, know-it-all-patient until you're feeling better.....MUCH better. You said earlier you were in danger of losing your driving license? And you have to wait "unfortunately 6 months" to speak with the doc? And things aren't going exactly well? No way! Remember, the squeaky wheel gets the oil....or, in our cases, nice APAPs with heated humidifiers, the software to read how we're doing and let us control our treatment, the proper mask for our faces and insurance companies, Doctors and DMEs who do what they're supposed to instead of just sending us on our merry way with the minimum that THEY think will do........while making the maximum profit for them.

Good luck, jonny.....and welcome to the club. It really isn't so bad....in fact, for me, it's pretty great to finally feel wonderful after almost 5 years of being an apneac.

rested gal · Post by **rested gal** » Thu Jun 30, 2005 5:14 pm

jonnyboy, since you live in the UK where the waiting time can be so long, you might want to do a search for the posts by "littlebaddow", a very knowledgeable, very helpful cpap user who is a member of this board and a citizen of the UK. Send him a private message or find his email address in his profile. He might be able to help you out a lot with good advice whilst you wait.

I've been wanting to use the word "whilst"! Seemed appropriate just now.

IWannaSleep · Post by **IWannaSleep** » Thu Jun 30, 2005 7:35 pm

I guess I am one of the lucky ones. Once I was diagnosed as positively having sleep apnea, i was invited to a half day seminar to learn all about sleep apnea. They gave us a lot of information. They also gave us our detailed data print outs and explained how to read the details, plots and stuff. They ended the day with fitting us with our first loaner masks and APAPs. I then had 2 follow up meetings with 2 different sleep docs, and additional meeting with technicians helping me work things out.

I can't imagine trying to make this therapy work without all the detailed information so I'm able to take control of my own treatment. Without being able to make daily, and some times hourly tweaks and adjustments I never would have made it this far.

Ron