Report from today!

[Guest guest]

I went today for some more testing. I went in for my echocardiagram and the tech...first thing she said to me...."Are you still smoking?" ...... one of my Grumpies punched her right in the nose. I informed her that I had never smoked and that Pulmonary Fibrosis was not caused by smoking!!! I could see by the look on her face that she had no idea what PF was. But, the rest of the test went fine. She was gentle and nice. My chest wall and especially the sternum area are so tender. I hate echos for that reason. I am sore tonight from it. She would not give me info. I see the doc on the 4th...will know then.

My 6 minute walk test was different than any I have ever done. Always before they carried or pushed my portable, had me walk as slowly as possible and kept me hooked to an oximeter.

Here they said they followed the directions given by the American Thoracic Society. They did not keep an oximeter on me. They told me to push my own tank and walk at a pace that I would normally walk if I were not sick. When I could no longer walk they would have me sit and take my saturation reading. Well, I made it 1.48 minutes and had to stop. My 02 was at 59. They said if they did it the way I always did it, I would have been stopped at 88. Which means I would not have gotten out the door into the hallway.

To me, this is a much more realistic test. They had people every 10 feet or so and a guy right behind me with a wheelchair. Bizarre! But, this test makes sense to me. The other one is so controlled and unrealistic.

I am so very tired. And a little scared. When I finished rehab in August and began maintainence, I was walking 30 minutes on the treadmill at 5L...plus other excersizes. A very few months later, I can not walk 2 minutes.

My whole life has changed. I don't drive, I barely get out of the house at all.

And YES....I too HATE this disease!!!

I don't like this poor, pityful me. This is not me. I feel like some alien has taken over my body and I have no control.

Hugs, Joyce