Weird respitory issue- anyone have this?

[barbaraW]

Hi,
The Dr. just told me that based on my breathing 'scores' I shouldn't be working so hard to breathe. She is going to have me tested to see if something else is going on too. That would be good if there was something else intesifying the shortness of breath that could be alleviated.

What are your breathing scores and what is your bi-pap time and breathing experience?

My FVC was 57% and my sucking test was 60. I am on my bi-pap for about 14/24 hours a day. When I am not on bi-pap I am working my auxillary muscles to breathe. The Dr. says at those scores I shouldn't need bi-pap so much and shouldn't have the difficulty. It is much worse when I exert myself- walking, standing, bending. I can only walk short distances before the pressure under my rib cage starts and breathing gets difficult.

I would be a lot more mobile/active if I could breathe better!

What is your experience? Anyone have these scores and can share what it is like for you?Anyone have any other lung issues?

thanks for any insight. I will be going to a pulmanologist and getting the in depth breathing test next week- will keep you posted.

Barb

 

[joelc]

Barb, not sure why you would be having trouble breathing at your current level.

My FVC is 30% and I use bipap while sleeping only. (7/24)

One thing I did experience.......anxiety causes real issues!
Be totally honest with yourself - how are you dealing with stress and the anxiety of your breathing problem? I had to sit down and really think about this awhile ago, what I found is that I was tense......since dealing with this my dependency on bipap, and shortness of breath, has been significantly reduced. My FVC is still the same, but if I stay calm my breathing is better - much better!

You could always have a secondary lung infection problem. That did happen to me once and it made a huge difference.
Also, this is a bad year for allergies......how are yours?

Hope you get to the bottom of it really soon.

 

[barbaraW]

what is your fvc and bi-pap hours?

That is really intersting to hear- thank you for responding. at 30% do you have the breath to exert yourself- walk or exercise..?

I am tense, I am sure that contributes. I think it is more than that too...allergies or lung infection are possibles, I will follow up on that.

It would be interesting to hear what others fvc % is and bi-pap hours and breathing ability with exertion..I am wondering if there are clear patterns.

thank you!

 

[Al]

Hi Barb. My last (may29) FVC was 62. I have been using Bipap for sleeping for 2 1/2 years at 18/8/18 settings. Just had a sleep study 2 weeks ago and the tech said things looked good. I use a power chair but transferring really winds me.
AL.