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MOST off the dr's I have worked with, admit me when I request it. Nobody knows how you feel better than you do. MOST CF trained Dr's know that. If my PFT's are low (and I am unhappy with it) that is my first clue. If I also have SOB with little exhertion, that is another. You have to decide what...

MOST off the dr's I have worked with, admit me when I request it. Nobody knows how you feel better than you do. MOST CF trained Dr's know that. If my PFT's are low (and I am unhappy with it) that is my first clue. If I also have SOB with little exhertion, that is another. You have to decide what...

MOST off the dr's I have worked with, admit me when I request it. Nobody knows how you feel better than you do. MOST CF trained Dr's know that. If my PFT's are low (and I am unhappy with it) that is my first clue. If I also have SOB with little exhertion, that is another. You have to decide what...

Do you go to the UPMC Clinic? If so, ask Connie, Carolyn or Diane - they will be able to point you in the right direction.

Do you go to the UPMC Clinic? If so, ask Connie, Carolyn or Diane - they will be able to point you in the right direction.

Do you go to the UPMC Clinic? If so, ask Connie, Carolyn or Diane - they will be able to point you in the right direction.

I have made this mistake. The Pulmozyme is a protein based - mucus thinning med, right? I used the same neb as Xopenex - a derivative of Albuterol an airway opening med, right? So for 2 weeks I had to whisper - lost my voice (yep, for 2 weeks). Anyway, my doc told me that the effects of the...

Welcome home Karla! The only good thing about long hospital stays - the supplemental insurance payment. Are you breathing like a champ now?

I find Xopenex causes jitters - only deeper down (if you will). With albuterol I shake visibally, but with Xop I feel it more inwardly.

I bring my x-box and hook it up to the room tv. also doubles as a dvd player!

I lived in Florida for 2-3 years (before I knew about CF). I didn't know why then but I did feel better while there. My CF Doc tells me that the salt water does make a small difference. Florida, on the coast, is a pleasant place to live.

I was just put on hypertonic. While in the hospital (14 days!) it worked wonders, especially after a couple of days. I should get my home supply Friday!

Dude, Other people in the room = BAD. The doctors here won't even let my brother and I stay in the same room for contamination possibilities!

Richmond, Va

Christian, As a veteran of coughing blood, I know it is unsettling. One of the reasons I get blood in sputum is a moving plug from a small airway into a larger one. The strain of the plug moving causes pain and some blood. This is only temporary - if it continues to hurt, call doctor again. The...

Ours are really the same too, but I feel like I have great input into my own health. Go in - register & pay (of course) Weight and vitals. Into exam room - wait for usually student doc. Answer 1 million questions about how I'm doing. Student doc goes and gets the REAL doc and we talk more about...

People after my own heart. My wife and I did the same thing!!! CONGRATULATIONS!!! We've been married now for 15+ years - and still going strong. -steve

People after my own heart. My wife and I did the same thing!!! CONGRATULATIONS!!! We've been married now for 15+ years - and still going strong. -steve

Trapped air in our lungs also can cause us to hunch over, sapping our height. I too have seen a small decrease in height. I work on my back muscles too, due to all the coughing tightening my front torso muscle. I think this actually helps me to maintain my height. -steve

My wife and I are on our 2nd house. We moved closer to my Med Center - in case of more going wrong. I found a job close to home and am working full time still. My wife is going to school and working. This house is in both of our names - the last one was just in mine. -steve