Success with a Sleep Doctor

2listless · Post by **2listless** » Tue Jun 21, 2005 8:55 pm

Ok, for 15 months I have complained, crabbed and b******** about my Sleep Doctor. He was arrogant and uncaring. I finally decided to take the bull by the horns and discussed the problem with my cardiologist. He called the Pulmonologist who called the Sleep Center and had me transferred to another doctor. According to the RT, everybody hates him - why me?
Today I went to see my new Sleep Doctor. He spent 1 hour and 15 minutes with me - which is approximately 1 hour longer than my other doctor spent in an entire year. He had completely READ my file, had marked the pages with little sticky notes if he wanted to ask me about something. We discussed the extremely poor quality of my sleep study and titration study, the fact that they had ONLY been auto read. All the tapes and printouts will be reviewed by a team consisting of himself, a neuro tech, a sleep tech and an RT. They will then confer with my cardiologist and pulmonologist. He has his own team at the Sleep Center. They travel with him to another hospital. I met each and every member of his team and they each discussed their role in my treatment program. I am to return in 3 weeks to meet with each member of the team again. I am to bring in my machine, hoses, humidifier and all my selection of masks. He expressed immediate concern about several things: 1. Since I have asthma, he has a real concern about me using the auto instead of a bipap. He really likes the auto with cflex but wants to have further consult with the Pulmonologist to see if it actually will provide enough relief on exhalation. Also, if pressure goes too high can actually cause an asthmatic episode. 2.) Never should have been put on Nasalaire against recommendations of ENT. His recommendation: no use of any nasal pillows without approval of ENT. 3.) Very concerned about variance in readings with different nasal interfaces. He looked at my printouts. Yes, I brought my laptop with me and showed him my downloads. He laughed and said I love a proactive patient. With the vista and comfort curve, my levels stay at 5 -8: with the Activa they go from 5 - 12 and hang at 12 for extended periods. I just thought it had something to do with the style or size of the interface - what do I know? He said, "Stop using the Activa. It is causing you to have asthmatic episodes during the night which is why you wake up feeling like you cannot breathe." Who knew? I have been using the damn thing for almost a year.
I discussed with him my fixes for the various masks - he especially enjoyed the pantyliner solution and relayed it to the RT when she came in. We all enjoyed a good laugh.

At great length we discussed my ever present battle with insomnia. He is taking me through a treatment program to alleviate some of the problems. I am happy to share the steps if anyone is interested in this problem.

I spent over 4 hours at the sleep center today. It was an unbelievable experience. I do believe this is supposed to be how Sleep problems should be handled. I finally feel as if there is some light at the end of the tunnel.
There are great doctors and great care out there, so I encourage anyone who is not satisfied with their treatment to not suffer in silence. I regret having put up with the lack of care for almost a year and a half. I hope that everyone who reads this will be encouraged to seek out better care - it is out there!

ozij · Post by **ozij** » Tue Jun 21, 2005 9:10 pm

How wonderful for you to have that positive experience -
and how wonderful of you to take the trouble to share it in so much detail.
Thanks!
O.

momexp5 · Post by **momexp5** » Tue Jun 21, 2005 9:26 pm

wow, 2listless, that's great!!! Fantastic! Begging the obvious question, of course, what area do you live in? <g>

rock and roll · Post by **rock and roll** » Tue Jun 21, 2005 10:36 pm

Wow, what an inspiring story! I for one deal with insomnia and would love to know what he recommends. All I ever get is the same old routine of no caffeine, relaxation techniques, etc. that never works.

rested gal · Post by **rested gal** » Wed Jun 22, 2005 1:04 am

Wonderful, 2listless! Your persistence paid off. WTG, girl!!

ahujudybear · Post by **ahujudybear** » Wed Jun 22, 2005 7:13 am

Hi 2listless!

What a great story!! And what a relief to you!!

Could I have your permission to send this to out post-polio list? One of the gals there is getting the run-around from her doctors re: xPAP and sleep studies ( the dr. told her to get a CPAP and then complain like hell that she can't use it in order to get a different type of machine!) As I recall, she als has been diagnosed with asthma?

What an inspiring story. Like they say, the squeaky wheel gets the grease!

WTG!

- JB

2listless · Post by **2listless** » Wed Jun 22, 2005 7:20 am

OK, Glad I inspired a few!!!!!! I live in East Tennessee, Rested Gal and I live on opposite sides of the mountain!!!!!!! I drive a rather long distance to Knoxville for treatment - it takes about 2 hours if the traffic is with me. Of course, this is the mountainous route - if I go to the expressway, it takes me an hour just to get there, so the scenic route it is!!!!!!

We also discussed the fact that I have 2 complete Activas. I said, why do they replace all he plastic and everything? It is like new...just the mask that breaks down. He said and I quote "They want more money!" I love this guy!

I forgot the most important thing!!!!!! He told me if I cannot sleep that I should read the Users manual and bore myself to sleep. I said, they did not give me a users manual. He walked out of the room and brought me a users manual AND a clinicians manual. He said, since you already know how to download and reset the machine, you might as well have all the instructions!!!!!!!!!!

I will start an entirely new thread about the treatment plan for insomnia. That way, those of you who fall into bed and drop into a lovely deep sleep do not have to read it! I will probably do that later this evening. Want to make sure I explain each step correctly.

Now, I need to do some real life things like laundry, vacuum, water the plants, supervise the lawn service, read a cheap novel...you know, the important things in life!!!! LOL Have a great day all!!!!!!!

HisServ · Post by **HisServ** » Wed Jun 22, 2005 8:14 am

Wow! Thanks for posting such a positive story. IMHO, we need more postings like that on here. I am just at the beginning of starting to try and find treatment for my mild sleep apnea, but am already frustrated with docs. Thanks for the encouragement that there are some good ones out there!!

Harmony · Post by **Harmony** » Wed Jun 22, 2005 9:08 am

Sounds to good to be true, but I'm glad to hear the good Doc's are out there. Just starting to deal with mild SA. My experience with the Doc so far has been disappointing. I wouldn't even know that my OSA is mild if it wasn't for all the great posts and information that I have read on this forum. What a great group to have found. Thanks to all.......

Harmony

Swordz · Post by **Swordz** » Wed Jun 22, 2005 10:15 am

I guess I am quite blessed (or just dang lucky) that I've had good experience w/ my sleep doc/clinic from the start. My hospital is in a smaller town, quite the rural part of KY, but so far so good.

I would be QUITE interested to hear about the insomnia treatment.... Hmmm... I may just PM you.

Anyways, good to hear that things are going better. If someone pays for treatment, they dang well deserve prompt, caring attention on the clinic and doctors part.

Healthcare: Can't live without it, barely live with it.

rested gal · Post by **rested gal** » Wed Jun 22, 2005 2:25 pm

He walked out of the room and brought me a users manual AND a clinicians manual. He said, since you already know how to download and reset the machine, you might as well have all the instructions!!!!!!!!!!

ROTFL!!! Gotta love your new sleep doctor! Cool.