Wegeners journey

[Pmarsh]

It sounds like your daughter has similar breathing and exercise issues to me. I was a competitive swimmer growing up and throughout university. More recently I have turned to competing in triathlons and bike races. I was diagnosed with Wegeners almost exactly a year ago - mainly with chronic sinus issues and acute lung inflammation and bleeding. Over the past year I have tried to get back into shape and keep up with regular exercise. In May I had a flare and they found granulomas (lesion) in my right lung. My lung capacity is certainly not what it used to be. I use inhalers when I exercise but find they don't help a great deal. I'm still convinced it's a matter of getting the Wegs more under control and my lungs will improve. I practice some breathing exercises each day that might help. Just some deep breathing and using a respirometer from time to time.

Hopefully your daughter can get back in the pool and to top form soon. All the best...

[jojoizzy]

Sangye,
Could you explain what you know PFTs being normal range, but TLV/ RVC being elevated (216% showing hyperinflation/ air trapping)? I still don't understand why or how lungs can be affected but never have the PFT show abnormalities despite obvious wheezing, short of breath, etc

[Sangye]

I'm sorry, I don't know enough about PFTs to explain that-- a pulmonologist should be able to.

[Trudy]

I still don't understand why or how lungs can be affected but never have the PFT show abnormalities despite obvious wheezing, short of breath, etc

The PFTs are alot of different tests that they use as many equations to determine results as were in our high school algebra books. I have had asthma since childhood and my PFT can be normal. The TLV is Total Lung Volume and the RVC is Relaxed Vital Capacity (all the air expelled from the breath you took in). In a healthy lung 1/3 of the air stays in the lung when you breath out the other 2/3. In a diseased lung this changes. In a healthy person if you were to take a deep breath and hold it, your lung would be hyperinflated; so in a diseased lung of diminished capacity (or from pressure from inflamed tissue outside the lung) the same result could occur. The result is shortness of breath(SOB).

I have found that for a few hours (max 4 hours for me) after taking Prednisone that I am not SOB. I imagine this could alter a PFT result. I know medication can alter my blood test results. I was taking my weekly Vitamin D the day before my blood test and it looked OK for 2 months. The next month I decided to take it after the test and my score was below normal. What I am trying to say is examine when meds are taken in relationship to the testing.

Hope this did not confuse you even more!