Re: Update on health issues...

[Guest guest]

Beth and Sher -

Thanks for your input. I like swimming but have never used a snorkel, Sher.

This will be interesting. I think I may have had this problem for a very long

time as I know I had sleep paralysis upon waking when I was in my early 20's,

but just chalked it up to the night before (lol... used to be a drinker in my

pre-marriage days). It will be interesting to see what a good nights sleep will

be like because I have lived my adult life believing that it has always been

this good! This was one of the recommendations from Best Doctors by the way.

Still pushing the insurance company to go to National Jewish Health center in

Denver. According to the Nat'l Jewish website, my insurance is one accepted

there and my husband's company has an office in Denver. Keep you fingers

crossed. I am keeping copies of my correspondence (email) with them in case I

need to call in bigger guns. :-o

Stefani Shaner

ILD / 2006, Diabetes II / 2006, PF / 2009, severe sleep apnea / 2009

>

> Stef,

> It sounds like a good solid plan to me! I'm glad that at least they are

getting to the root of the sleep problems. I think you will notice a big

difference in how you feel during the day once you get situated with the C-Pap. 

Everyone needs to be able to sleep, especially those of us with health issues!

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: sfshaner

> To: Breathe-Support

> Sent: Thursday, April 23, 2009 1:37:51 PM

> Subject: Update on health issues...

>

>

>

>

>

> I got a call from the Sleep doctor and I have SEVERE sleep apnea. I am going

in next Wednesday (4/29) for the CPAP titration to determine what level of

oxygen I will need and to be fitted with the CPAP mask. And to think that no one

thought to test me before this!! I am still waiting for the insurance

authorization, and have sent an email to Nat'l Jewish Health to see if they can

help. My doctor is out of the office until May 4 and I have an appointment for

May 5. I have printed out the pulmonary physiology request form and intend to

have it filled out for complete PFT, Blood Gas and either the walking pulse

oximetry or the exercise tolerance test when I go in to see my doctor on 5/5. I

want to go to Denver, get the tests, have results sent to my Dr. in Utah and a

recommendation for pulmonologist in UT. Does this sound like a plan or what?

>

> I was really depressed this AM and shook it off and pushed the envelope.

>

> AND what is it with doctors... they take vacation just when you would like to

see them.

>

> Stefani Shaner

> ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea / 2009

>

[Guest guest]

Stef

Now you need to fnd out answers to both issues, what level of apnea and

what level of oxygen desaturation. They are entirely separate issues,

although they can be treated in conjunction with each other.

>

> I got a call from the Sleep doctor and I have SEVERE sleep apnea. I

am going in next Wednesday (4/29) for the CPAP titration to determine

what level of oxygen I will need and to be fitted with the CPAP mask.

And to think that no one thought to test me before this!! I am still

waiting for the insurance authorization, and have sent an email to Nat'l

Jewish Health to see if they can help. My doctor is out of the office

until May 4 and I have an appointment for May 5. I have printed out the

pulmonary physiology request form and intend to have it filled out for

complete PFT, Blood Gas and either the walking pulse oximetry or the

exercise tolerance test when I go in to see my doctor on 5/5. I want to

go to Denver, get the tests, have results sent to my Dr. in Utah and a

recommendation for pulmonologist in UT. Does this sound like a plan or

what?

>

> I was really depressed this AM and shook it off and pushed the

envelope.

>

> AND what is it with doctors... they take vacation just when you would

like to see them.

>

> Stefani Shaner

> ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea / 2009

>

[Guest guest]

Andy

Whichever I chose, I would go to the office that would be serving you

and talk directly with the manager about your current and anticipated

needs, expectations, and how they would serve you.

While I agree with MB that it does depend on the local management, I

also have to say that on an overall national basis Lincare does fare

better than Apria. I'm basing this on many forums as well as the BBB

reporting on both. Seems Lincare has found it more beneficial on the

whole to bribe doctors than to shortchange patients (yes, they were

required to pay $12 Million in fines). That said we do have members in

specific locations who get good service from Apria and members with both

good and bad from Lincare.

You might also check where you're likely to go as there are others with

broad coverage, but not national. American Homepatient is an example.

> >

> > I got a call from the Sleep doctor and I have SEVERE sleep apnea. I

> am going in next Wednesday (4/29) for the CPAP titration to determine

> what level of oxygen I will need and to be fitted with the CPAP mask.

> And to think that no one thought to test me before this!! I am still

> waiting for the insurance authorization, and have sent an email to

Nat'l

> Jewish Health to see if they can help. My doctor is out of the office

> until May 4 and I have an appointment for May 5. I have printed out

the

> pulmonary physiology request form and intend to have it filled out for

> complete PFT, Blood Gas and either the walking pulse oximetry or the

> exercise tolerance test when I go in to see my doctor on 5/5. I want

to

> go to Denver, get the tests, have results sent to my Dr. in Utah and a

> recommendation for pulmonologist in UT. Does this sound like a plan or

> what?

> >

> > I was really depressed this AM and shook it off and pushed the

> envelope.

> >

> > AND what is it with doctors... they take vacation just when you

would

> like to see them.

> >

> > Stefani Shaner

> > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea / 2009

> >

>

[Guest guest]

Andy

Whichever I chose, I would go to the office that would be serving you

and talk directly with the manager about your current and anticipated

needs, expectations, and how they would serve you.

While I agree with MB that it does depend on the local management, I

also have to say that on an overall national basis Lincare does fare

better than Apria. I'm basing this on many forums as well as the BBB

reporting on both. Seems Lincare has found it more beneficial on the

whole to bribe doctors than to shortchange patients (yes, they were

required to pay $12 Million in fines). That said we do have members in

specific locations who get good service from Apria and members with both

good and bad from Lincare.

You might also check where you're likely to go as there are others with

broad coverage, but not national. American Homepatient is an example.

> >

> > I got a call from the Sleep doctor and I have SEVERE sleep apnea. I

> am going in next Wednesday (4/29) for the CPAP titration to determine

> what level of oxygen I will need and to be fitted with the CPAP mask.

> And to think that no one thought to test me before this!! I am still

> waiting for the insurance authorization, and have sent an email to

Nat'l

> Jewish Health to see if they can help. My doctor is out of the office

> until May 4 and I have an appointment for May 5. I have printed out

the

> pulmonary physiology request form and intend to have it filled out for

> complete PFT, Blood Gas and either the walking pulse oximetry or the

> exercise tolerance test when I go in to see my doctor on 5/5. I want

to

> go to Denver, get the tests, have results sent to my Dr. in Utah and a

> recommendation for pulmonologist in UT. Does this sound like a plan or

> what?

> >

> > I was really depressed this AM and shook it off and pushed the

> envelope.

> >

> > AND what is it with doctors... they take vacation just when you

would

> like to see them.

> >

> > Stefani Shaner

> > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea / 2009

> >

>

[Guest guest]

Andy

There is very little of the country where you wouldn't be near an Apria

or a Lincare.

Now, if you use a local provider most of them do belong to associations

with local providers throughout the country. You can then use those for

oxygen when traveling. The only problem is you'll have to pay. I was

with a local provider when I made a 17 day trip last year and had to pay

for refills of my reservoir twice at $50 each time.

> > >

> > > I got a call from the Sleep doctor and I have SEVERE sleep apnea.

I

> > am going in next Wednesday (4/29) for the CPAP titration to

determine

> > what level of oxygen I will need and to be fitted with the CPAP

mask.

> > And to think that no one thought to test me before this!! I am still

> > waiting for the insurance authorization, and have sent an email to

> Nat'l

> > Jewish Health to see if they can help. My doctor is out of the

office

> > until May 4 and I have an appointment for May 5. I have printed out

> the

> > pulmonary physiology request form and intend to have it filled out

for

> > complete PFT, Blood Gas and either the walking pulse oximetry or the

> > exercise tolerance test when I go in to see my doctor on 5/5. I want

> to

> > go to Denver, get the tests, have results sent to my Dr. in Utah and

a

> > recommendation for pulmonologist in UT. Does this sound like a plan

or

> > what?

> > >

> > > I was really depressed this AM and shook it off and pushed the

> > envelope.

> > >

> > > AND what is it with doctors... they take vacation just when you

> would

> > like to see them.

> > >

> > > Stefani Shaner

> > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea /

2009

> > >

> >

>

[Guest guest]

Andy

I took a 50 pound reservoir with me, in my van. While driving most of

the day, I didn't need oxygen. Refilled portable from the reservoir.

Took the reservoir in at night to the hotels or relatives houses.

Started with it full so used about 150 pounds of oxygen on the trip or

just over 51,000 liters which would be an average of just over 2 lpm,

balanced by zero when driving versus 3-4 when active.

> > > >

> > > > I got a call from the Sleep doctor and I have SEVERE sleep

apnea.

> I

> > > am going in next Wednesday (4/29) for the CPAP titration to

> determine

> > > what level of oxygen I will need and to be fitted with the CPAP

> mask.

> > > And to think that no one thought to test me before this!! I am

still

> > > waiting for the insurance authorization, and have sent an email to

> > Nat'l

> > > Jewish Health to see if they can help. My doctor is out of the

> office

> > > until May 4 and I have an appointment for May 5. I have printed

out

> > the

> > > pulmonary physiology request form and intend to have it filled out

> for

> > > complete PFT, Blood Gas and either the walking pulse oximetry or

the

> > > exercise tolerance test when I go in to see my doctor on 5/5. I

want

> > to

> > > go to Denver, get the tests, have results sent to my Dr. in Utah

and

> a

> > > recommendation for pulmonologist in UT. Does this sound like a

plan

> or

> > > what?

> > > >

> > > > I was really depressed this AM and shook it off and pushed the

> > > envelope.

> > > >

> > > > AND what is it with doctors... they take vacation just when you

> > would

> > > like to see them.

> > > >

> > > > Stefani Shaner

> > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea /

> 2009

> > > >

> > >

> >

>

[Guest guest]

Andy

I use liquid and I have that much oxygen at all times. I have a larger

reservoir in my home and a 50 lb. reservoir in my van. I have a Helios

Marathon as my portable.

However, even before I had this full time, I never had a problem getting

a reservoir for a trip. Likewise, if you need canisters or a POC or a

concentrator for a trip, you should have no problem getting it. You just

have to ask, discuss, and perhaps insist. But oxygen does not have to be

any deterrent to auto travel.

Beth does the same but with canisters and a concentrator. Maybe

she'll post the logistics of how she does one of her road trips.

> > > > >

> > > > > I got a call from the Sleep doctor and I have SEVERE sleep

> apnea.

> > I

> > > > am going in next Wednesday (4/29) for the CPAP titration to

> > determine

> > > > what level of oxygen I will need and to be fitted with the CPAP

> > mask.

> > > > And to think that no one thought to test me before this!! I am

> still

> > > > waiting for the insurance authorization, and have sent an email

to

> > > Nat'l

> > > > Jewish Health to see if they can help. My doctor is out of the

> > office

> > > > until May 4 and I have an appointment for May 5. I have printed

> out

> > > the

> > > > pulmonary physiology request form and intend to have it filled

out

> > for

> > > > complete PFT, Blood Gas and either the walking pulse oximetry or

> the

> > > > exercise tolerance test when I go in to see my doctor on 5/5. I

> want

> > > to

> > > > go to Denver, get the tests, have results sent to my Dr. in Utah

> and

> > a

> > > > recommendation for pulmonologist in UT. Does this sound like a

> plan

> > or

> > > > what?

> > > > >

> > > > > I was really depressed this AM and shook it off and pushed the

> > > > envelope.

> > > > >

> > > > > AND what is it with doctors... they take vacation just when

you

> > > would

> > > > like to see them.

> > > > >

> > > > > Stefani Shaner

> > > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea

/

> > 2009

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Beth

You still accomplish the same with tanks so describe one of your longer

trips to him and how you would go about getting the supplies including

how many canisters of different sizes you might need on the trip.

> > > > >

> > > > > I got a call from the Sleep doctor and I have SEVERE sleep

> apnea.

> > I

> > > > am going in next Wednesday (4/29) for the CPAP titration to

> > determine

> > > > what level of oxygen I will need and to be fitted with the CPAP

> > mask.

> > > > And to think that no one thought to test me before this!! I am

> still

> > > > waiting for the insurance authorization, and have sent an email

to

> > > Nat'l

> > > > Jewish Health to see if they can help. My doctor is out of the

> > office

> > > > until May 4 and I have an appointment for May 5. I have printed

> out

> > > the

> > > > pulmonary physiology request form and intend to have it filled

out

> > for

> > > > complete PFT, Blood Gas and either the walking pulse oximetry or

> the

> > > > exercise tolerance test when I go in to see my doctor on 5/5. I

> want

> > > to

> > > > go to Denver, get the tests, have results sent to my Dr. in Utah

> and

> > a

> > > > recommendation for pulmonologist in UT. Does this sound like a

> plan

> > or

> > > > what?

> > > > >

> > > > > I was really depressed this AM and shook it off and pushed the

> > > > envelope.

> > > > >

> > > > > AND what is it with doctors... they take vacation just when

you

> > > would

> > > > like to see them.

> > > > >

> > > > > Stefani Shaner

> > > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea

/

> > 2009

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Joyce

No, I don't own the reservoir currently in my van. It is supplied by

Lincare. However, if you want to purchase a reservoir, they are

available from many used and reconditioning companies as well as on ebay

and craigslist at times. The prices new for Caire Liberator 10's and

20's (25 lb and 50 lb) are approximately $1200-1500. Used ones typically

run $400-700, sometimes slightly less.

> > > >

> > > > I got a call from the Sleep doctor and I have SEVERE sleep

apnea.

> I

> > > am going in next Wednesday (4/29) for the CPAP titration to

> determine

> > > what level of oxygen I will need and to be fitted with the CPAP

> mask.

> > > And to think that no one thought to test me before this!! I am

still

> > > waiting for the insurance authorization, and have sent an email to

> > Nat'l

> > > Jewish Health to see if they can help. My doctor is out of the

> office

> > > until May 4 and I have an appointment for May 5. I have printed

out

> > the

> > > pulmonary physiology request form and intend to have it filled out

> for

> > > complete PFT, Blood Gas and either the walking pulse oximetry or

the

> > > exercise tolerance test when I go in to see my doctor on 5/5. I

want

> > to

> > > go to Denver, get the tests, have results sent to my Dr. in Utah

and

> a

> > > recommendation for pulmonologist in UT. Does this sound like a

plan

> or

> > > what?

> > > >

> > > > I was really depressed this AM and shook it off and pushed the

> > > envelope.

> > > >

> > > > AND what is it with doctors... they take vacation just when you

> > would

> > > like to see them.

> > > >

> > > > Stefani Shaner

> > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea /

> 2009

> > > >

> > >

> >

>

[Guest guest]

Joyce

No, I don't own the reservoir currently in my van. It is supplied by

Lincare. However, if you want to purchase a reservoir, they are

available from many used and reconditioning companies as well as on ebay

and craigslist at times. The prices new for Caire Liberator 10's and

20's (25 lb and 50 lb) are approximately $1200-1500. Used ones typically

run $400-700, sometimes slightly less.

> > > >

> > > > I got a call from the Sleep doctor and I have SEVERE sleep

apnea.

> I

> > > am going in next Wednesday (4/29) for the CPAP titration to

> determine

> > > what level of oxygen I will need and to be fitted with the CPAP

> mask.

> > > And to think that no one thought to test me before this!! I am

still

> > > waiting for the insurance authorization, and have sent an email to

> > Nat'l

> > > Jewish Health to see if they can help. My doctor is out of the

> office

> > > until May 4 and I have an appointment for May 5. I have printed

out

> > the

> > > pulmonary physiology request form and intend to have it filled out

> for

> > > complete PFT, Blood Gas and either the walking pulse oximetry or

the

> > > exercise tolerance test when I go in to see my doctor on 5/5. I

want

> > to

> > > go to Denver, get the tests, have results sent to my Dr. in Utah

and

> a

> > > recommendation for pulmonologist in UT. Does this sound like a

plan

> or

> > > what?

> > > >

> > > > I was really depressed this AM and shook it off and pushed the

> > > envelope.

> > > >

> > > > AND what is it with doctors... they take vacation just when you

> > would

> > > like to see them.

> > > >

> > > > Stefani Shaner

> > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea /

> 2009

> > > >

> > >

> >

>

[Guest guest]

Pink

Yes, they provide me with two reservoirs at no charge to me. They do it

all for their standard medicare payment (80% medicare and 20% from my

supplement). I discussed this need with them prior to changing to them.

> > > > >

> > > > > I got a call from the Sleep doctor and I have SEVERE sleep

> apnea.

> > I

> > > > am going in next Wednesday (4/29) for the CPAP titration to

> > determine

> > > > what level of oxygen I will need and to be fitted with the CPAP

> > mask.

> > > > And to think that no one thought to test me before this!! I am

> still

> > > > waiting for the insurance authorization, and have sent an email

to

> > > Nat'l

> > > > Jewish Health to see if they can help. My doctor is out of the

> > office

> > > > until May 4 and I have an appointment for May 5. I have printed

> out

> > > the

> > > > pulmonary physiology request form and intend to have it filled

out

> > for

> > > > complete PFT, Blood Gas and either the walking pulse oximetry or

> the

> > > > exercise tolerance test when I go in to see my doctor on 5/5. I

> want

> > > to

> > > > go to Denver, get the tests, have results sent to my Dr. in Utah

> and

> > a

> > > > recommendation for pulmonologist in UT. Does this sound like a

> plan

> > or

> > > > what?

> > > > >

> > > > > I was really depressed this AM and shook it off and pushed the

> > > > envelope.

> > > > >

> > > > > AND what is it with doctors... they take vacation just when

you

> > > would

> > > > like to see them.

> > > > >

> > > > > Stefani Shaner

> > > > > ILD / 2006, Diabetes II / 2006, PF / 2009, Severe Sleep Apnea

/

> > 2009

> > > > >

> > > >

> > >

> >

>