New to cpap and making life long connections.

[Crazy Cat Lady]

I did my sleep study at Kaiser on Feb. 22. They said the results would take about a month. Had to have surgery on March 23 for skin cancer on the scalp. (3rd surgery). So
remember hats are good. In my pre-op interview with the anesthesiologist he noticed I had sleep apnea. (That’s how I found out.) He said that because of that he would make sure I was tubed during surgery as it was scheduled to be a four hour surgery, hoping to get it all the third time. So glad they noted sleep apnea before surgery. (I thought they routinely tubed during surgery anyway.)

As I live on an outer island in Hawaii, I had to fly to Oahu for the surgery. Upon my return on March 24th, my husband took me from the airport to a scheduled DME appointment pick up my cpap and full mask. No information on sleep apnea, just how to clean machine. At the time I looked like the Travelocity Gnome from my bandage. I tried the cpap and full face mask that first night. It all seemed to go well for the first three nights Hubby asked how come it went well the first couple of nights. I thought about and realized I was on oxy for the first three nights. Since coming off oxy, I have not been doing as well. Full face gives me claustrophobia. Got permission to switch to LifeEasy nasal mask but couldn’t really try it as insomnia wouldn’t let me get to sleep until 6:00 a.m. (Thanks for all the great info on the Insomnia Monster thread.) I was able to use it last night, and it felt a whole lot better than the full mask.

With the bandages off, I discovered my scalp had been rearranged and I have about 60 staples and 20 stitches. Now the staples are driving me crazy at night and I can’t wait to get them out on the 12th. So between the cpap and the staples, it’s been a rather interesting week.

I want to get a machine that records data. DME and doctor both said it’s not that important. But I’ve learned from you guys how important it is. I saw on my cpap that it needs to be adjusted according to your altitude. As I live at 4,000 feet my machine should have been set for a higher altitude but was set at sea level. So I know I need to be my own best advocate.

Some connections I’ve made this week
I think I’ve had sleep apnea for most of my life. I am 63. But I have always survived on
the catnap. Even in my 20’s when I worked, I combined my two breaks into one so I could take a 20 minute nap in the afternoon.

As a child I was terrified of the dark. Always felt like I was going to die in my sleep.
Also never really liked that child’s prayer “If I should die before I wake, I pray the Lord my soul to take.” You know that’s a really scary prayer for a child. Think about it.
I always had to have a light on and I wouldn’t go to sleep until I could see the dawn light.
I noticed with the cpap that I again need a light on during the night as I would still wake up in a panic, but more because of the mask..

I wonder now if the fear of the dark was because of sleep apnea. Hubby is a sound sleeper even a hurricane wouldn’t disturb him. But when my daughter and I had to share a room four years ago, she said I would snore and then stop breathing and she was worried all night. When a friend wanted to treat me to overnight at one of the fancy Hawaii hotels I didn’t want to go because I didn’t want to disturb her sleep. That is what finally made me request a Sleep Study. Sad that that was my motivator.

And about the insomnia - I couldn’t figure out how I could have sleep apnea and insomnia at the same time. How could I be so tired yet couldn’t go to sleep. I read somewhere that the insomnia is your body (subconscious) not wanting to go to sleep because of the fear of not breathing.

I just requested a copy of my sleep study. The only information about sleep apnea has come from this wonderful and informative forum. I am very grateful for all the generous contributors here.

[bayourest]

welcome to the forum. You have definitely come to the right place. You're right, you need a data capable machine and dont let them give you one that's not! You have a lot of stuff to work on at one time so stay with it here and you will surely get all the help you need as you deal with each step

[Wulfman]

Since you're dealing with Kaiser, about the only way you're going to get a data-capable machine is to buy it out-of-pocket.
The "up-side" of that is that you'd have a backup machine for various purposes (like traveling).

Hope everything goes well with your cancer.
From my own experience, I spent a week on Maui in March of '84 and in three hours on the beach got the worst sunburn of my life. My head and forehead were peeling for a long time afterward.
So, hats ARE good!


Den

[Janknitz]

Aloha, CCL.

I used to live on the Big Island. During that time we were doing infertility treatments and I ran out of a crucial drug that was not available ANYWHERE on the Big Island. I eneded up having to fly to Oahu just to get a vial of this medication--expensive, time consuming, and upsetting, especially since I was a hormonal WITCH at the time . So I know exactly what you are talking about. To get special blood tests required to be done no later than 8:30 a.m. I'd have to fly to Oahu on the first flight out of Hilo, RUN to the taxi stand and just make it to the lab at Kapiolani by 8:25. No fun!!!! Bad, bad memories.

When you live on an outer island like that, data is even more important. There's no way you can run to Oahu just to have them check your mask fit for leaks or something trivial like that. You need to be able to access your data and report to Kaiser what's going on, and you need to be able to help yourself if nobody on the Big Island is able to help you because all the specialists are an airplane flight away.

I just don't know WHAT the doctors are thinking on Oahu--they have no clue what it's like to access specialized medical care if you live on an outer island. Sheesh!

DO NOT accept anything less than a data capable machine, and in your case I'd INSIST on an APAP so you can do a home titration if necessary (Kaiser in Northern California sends people home with loaner APAP's to do home titrations anyway, so don't let them tell you it's not possible! ).

[Hueffenhardt]

Hey, Crazy Cat Lady,

Welcome to the forum. I hope your scalp heals quickly. Good luck with cpap and dealing with your insomnia.

Since you are a friend that I knew before either of us started cpap, I'll share a link to my cpap story: viewtopic.php?f=1&t=58929

It is good to see you here and to hear that you are getting the treatment you need.

[Janknitz]

Since you're dealing with Kaiser, about the only way you're going to get a data-capable machine is to buy it out-of-pocket.

Not so, Wulfman! Kaiser of Northern California (I don't know about other regions) ONLY provides data capable Respironics System One Pro's, autos or Bipaps depending on the results of your sleep study. They want to be able to monitor the EFFICACY of your treatment and make changes without the expense of more sleep studies. The sleep labs have the software to read the data and they will work closely with you to make sure that your therapy is working for you. They can't do that without data.

I got an APAP before I knew ANYTHING about OSA or what to ask for. Kaiser is its own DME (Crapria is the supplier), and has complete control over what you get if you have their DME coverage. I didn't have to jump through any hoops to get it. I'm not sure what their criteria is for
APAP vs. CPAP, but I slept in one position all night during the PSG home study, so it wasn't for positional apnea.

Kaiser has a vested interest in effective treatment because it saves them money later on by preventing or delaying the long term effects of untreated SA. So it makes sense for them to make sure that not only are you using your CPAP, but that it's effective treatment for you.

I'm not a big Kaiser fan, but I do think they do a pretty good job on OSA. I can't say if they are as good for complex apnea, PLMD, or UARS type issues, though--this is based on personal experience and observation and I have straightforward OSA. They do everything in groups so I saw what others were getting, too.

[Wulfman]

Since you're dealing with Kaiser, about the only way you're going to get a data-capable machine is to buy it out-of-pocket.

Not so, Wulfman! Kaiser of Northern California (I don't know about other regions) ONLY provides data capable Respironics System One Pro's, autos or Bipaps depending on the results of your sleep study. They want to be able to monitor the EFFICACY of your treatment and make changes without the expense of more sleep studies. The sleep labs have the software to read the data and they will work closely with you to make sure that your therapy is working for you. They can't do that without data.

I got an APAP before I knew ANYTHING about OSA or what to ask for. Kaiser is its own DME (Crapria is the supplier), and has complete control over what you get if you have their DME coverage. I didn't have to jump through any hoops to get it. I'm not sure what their criteria is for
APAP vs. CPAP, but I slept in one position all night during the PSG home study, so it wasn't for positional apnea.

Kaiser has a vested interest in effective treatment because it saves them money later on by preventing or delaying the long term effects of untreated SA. So it makes sense for them to make sure that not only are you using your CPAP, but that it's effective treatment for you.

I'm not a big Kaiser fan, but I do think they do a pretty good job on OSA. I can't say if they are as good for complex apnea, PLMD, or UARS type issues, though--this is based on personal experience and observation and I have straightforward OSA. They do everything in groups so I saw what others were getting, too.

Well, that's the first I've heard of that.
It's never made any sense to me that these manufacturers would be making any thing other than fully data-capable machines and that the medical/equipment providers (doctors and DMEs) would not insist on anything other than fully data-capable machines. The manufacturing costs would be significantly less and the data would be there if and when the doctors come to realize that it does have value.

Thanks for that bit of info.


Den

[Crazy Cat Lady]

welcome to the forum. You have definitely come to the right place. You're right, you need a data capable machine and dont let them give you one that's not! You have a lot of stuff to work on at one time so stay with it here and you will surely get all the help you need as you deal with each step

Thank you bayourest. I'll fight for a data capable machine. This forum has helped me with my first baby steps.

[Crazy Cat Lady]

Since you're dealing with Kaiser, about the only way you're going to get a data-capable machine is to buy it out-of-pocket.
The "up-side" of that is that you'd have a backup machine for various purposes (like traveling).

Hope everything goes well with your cancer.
From my own experience, I spent a week on Maui in March of '84 and in three hours on the beach got the worst sunburn of my life. My head and forehead were peeling for a long time afterward.
So, hats ARE good!
Den

Thank you Den. I've never been a sun bather but have lived in California, Guam, and Hawaii so the years have added up. Hope you have fond memories of Maui in spite of the sunburn.

[Crazy Cat Lady]

Aloha, CCL.

I used to live on the Big Island. During that time we were doing infertility treatments and I ran out of a crucial drug that was not available ANYWHERE on the Big Island. I eneded up having to fly to Oahu just to get a vial of this medication--expensive, time consuming, and upsetting, especially since I was a hormonal WITCH at the time . So I know exactly what you are talking about. To get special blood tests required to be done no later than 8:30 a.m. I'd have to fly to Oahu on the first flight out of Hilo, RUN to the taxi stand and just make it to the lab at Kapiolani by 8:25. No fun!!!! Bad, bad memories.

When you live on an outer island like that, data is even more important. There's no way you can run to Oahu just to have them check your mask fit for leaks or something trivial like that. You need to be able to access your data and report to Kaiser what's going on, and you need to be able to help yourself if nobody on the Big Island is able to help you because all the specialists are an airplane flight away.

I just don't know WHAT the doctors are thinking on Oahu--they have no clue what it's like to access specialized medical care if you live on an outer island. Sheesh!

DO NOT accept anything less than a data capable machine, and in your case I'd INSIST on an APAP so you can do a home titration if necessary (Kaiser in Northern California sends people home with loaner APAP's to do home titrations anyway, so don't let them tell you it's not possible! ).

Sounds like you lived in Hilo. We live in Volcano. When were you here? We have a Hilo Clinic and can do some routine stuff. But surgeries, hospital stays and sleep studies all take place on Oahu.

[Crazy Cat Lady]

Hey, Crazy Cat Lady,

Welcome to the forum. I hope your scalp heals quickly. Good luck with cpap and dealing with your insomnia.

Since you are a friend that I knew before either of us started cpap, I'll share a link to my cpap story: viewtopic.php?f=1&t=58929

It is good to see you here and to hear that you are getting the treatment you need.

Thank you for your well wishes. Again, I want to tell you how comforting it was to see a familar name.

I read your cpap story. Wow you have excellent recall. Sounds like you really had good sleep techs. I was asked if I was a mouth breather. When I said I thought
I was as my mouth gets dry, the tech said that I would get a full face mask. Held it up my face and said, This is what it will feel like. That was it. No choices, no trying it on. At my DME there was an order for a full face and that was it. After reading this forum I reguested to try a nasal mask and was told I had to get a new script. Which I did. Doctor was hesitate because the script was for full face and my pressure probably wouldn't be correct. I said, I would at least want to try a nasal mask before I commit to a long time of cpap with a full mask.

[Crazy Cat Lady]

Since you're dealing with Kaiser, about the only way you're going to get a data-capable machine is to buy it out-of-pocket.

Not so, Wulfman! Kaiser of Northern California (I don't know about other regions) ONLY provides data capable Respironics System One Pro's, autos or Bipaps depending on the results of your sleep study. They want to be able to monitor the EFFICACY of your treatment and make changes without the expense of more sleep studies. The sleep labs have the software to read the data and they will work closely with you to make sure that your therapy is working for you. They can't do that without data.

I got an APAP before I knew ANYTHING about OSA or what to ask for. Kaiser is its own DME (Crapria is the supplier), and has complete control over what you get if you have their DME coverage. I didn't have to jump through any hoops to get it. I'm not sure what their criteria is for
APAP vs. CPAP, but I slept in one position all night during the PSG home study, so it wasn't for positional apnea.

Kaiser has a vested interest in effective treatment because it saves them money later on by preventing or delaying the long term effects of untreated SA. So it makes sense for them to make sure that not only are you using your CPAP, but that it's effective treatment for you.

I'm not a big Kaiser fan, but I do think they do a pretty good job on OSA. I can't say if they are as good for complex apnea, PLMD, or UARS type issues, though--this is based on personal experience and observation and I have straightforward OSA. They do everything in groups so I saw what others were getting, too.

Thanks for all this important infor Jan. I am copying to have in my files when I meet with my DME later this week.

[Janknitz]

Actually, we lived in HPP, between Hilo and Pahoa. It was fun living there. It's been about 18 years since we moved, and there was no Kaiser in my day. Almost everyone had HMSA and it was a pain to deal with! I used to work in home healthcare out of Hilo Hospital. That was a great experience. My husband worked for the company that dug the wells for Puna Geothermal. I loved Volcano--enjoyed going up there for cool air so I could wear my sweaters.

I do have to warn you that the DME formulary for Kaiser Hawaii may be different than the formulary in Northern California, and if they are not as "enlightened" you may be stuck with a non-data capable machine. Since Kaiser is your DME (the local DME is merely the "supplier") they are going to choose, not you, and no amount of arguing will make a difference. You should be able to call over to the DME department at Kaiser on Oahu and find out exactly what machines they supply and whether you want it or not. It may cost you more, but if you can afford to buy out of pocket you can get whatever machine you want online, and most will forgo the shipping costs. You may even be able to get a machine locally on Craigslist if you look.

[Goofproof]

I want to get a machine that records data. DME and doctor both said it’s not that important. But I’ve learned from you guys how important it is. I saw on my cpap that it needs to be adjusted according to your altitude. As I live at 4,000 feet my machine should have been set for a higher altitude but was set at sea level. So I know I need to be my own best advocate.

Most of the better XPAPs auto adjust for alt. Getting one that records full data is needed even more by someone that uses a nasal mask, so they can see if they are mouthleaking and control leaks better. welcome to our group, and best wishes on your operation outcome. Jim