Re: air hunger, CoQ10 and Barbara

[Guest guest]

Barbara - I'm so glad to hear that you are doing better. It's a bummer to be

crashed for so long. Is your new doctor in Lawrence or KC?

Thanks Laurie or - sorry - can't remember which one answered the

question about orphan drug status. If it is in that category will insurance

pick it up for mito patients?

Smurffy - air hunger is my WORST symptom. I could barely function at all

before they put me on oxygen about a year ago. My sats were mostly OK - but

they occasionally caught them going into the 70s and 80s with exertion so

they could justify putting me on oxygen. It is a life-saver for me. I use it

about 8 hours a day - morning, noon and evening for 2-3 hours at a time -

Occasionally I need it more - sometimes I can even get away with using it

less. When I get a cold or something that messes with my breathing, I tend

to be short of breath and/or have more air hunger - but other than that I do

pretty well. My sleep study showed no real problem at night (except when

lying on my back, which I rarely do).

Anyway - the regular regimin of oxygen rather than just when feeling bad

seems to be the best for me. Hope that helps.

Anne

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[Guest guest]

Anne,

My new doc is in Lawrence. We have known him for quite a few years

through friends, and my old local pcp highly recommended him--said

he likes hard problems and challenges. For sure I am a challenge.

The first time I saw him as a patient he said, " You are a mess! "

Agreed.....

Barbara

>

>

>

>

> Barbara - I'm so glad to hear that you are doing better. It's a

bummer to be

> crashed for so long. Is your new doctor in Lawrence or KC?

>

> Thanks Laurie or - sorry - can't remember which one

answered the

> question about orphan drug status. If it is in that category will

insurance

> pick it up for mito patients?

>

> Smurffy - air hunger is my WORST symptom. I could barely function

at all

> before they put me on oxygen about a year ago. My sats were mostly

OK - but

> they occasionally caught them going into the 70s and 80s with

exertion so

> they could justify putting me on oxygen. It is a life-saver for

me. I use it

> about 8 hours a day - morning, noon and evening for 2-3 hours at a

time -

> Occasionally I need it more - sometimes I can even get away with

using it

> less. When I get a cold or something that messes with my

breathing, I tend

> to be short of breath and/or have more air hunger - but other than

that I do

> pretty well. My sleep study showed no real problem at night

(except when

> lying on my back, which I rarely do).

> Anyway - the regular regimin of oxygen rather than just when

feeling bad

> seems to be the best for me. Hope that helps.

>

> Anne

>

> _________________________________________________________________

> Add photos to your e-mail with MSN 8. Get 2 months FREE*.

> http://join.msn.com/?page=features/featuredemail