Sunday, May 29, 2011

Update and Great Strides 2011!

Well after having a relapse in the hospital, I got out on Friday the 13th with plans to do 2 more weeks until I went to clinic and then they would decide if I needed it longer or not. Had some issues with my PICC leaking at the entry site, I think due to the fact that they could only make it a mid-line, and the hole where they put it was huge due to messing with it so much to try and get it all the way up my arm to my heart. It's still leaked on and off, but still works so I'm keeping it to finish my meds, which is Tuesday. When I went to clinic my numbers were not good, 38% FEV1, my baseline is 47% and I was almost to that when I was released from the hospital on April 18th. Not really sure why I had a sudden onset of illness so soon after feeling so good only 2 weeks before. The doctor is going to do more extensive testing on my culture's, told me to get rid of feathered pillows I have on my couch, and consider leaving my home for a while to see if it's something environmental, I don't think it is since nothing has changed in my environment. If my cultures come back normal then he wants a bronchial scope, I have had 2 of these in the past so I know what it's like. We also decided that the next time I need anti-biotics (hopefully not for a LONG time) I will have another Port put in, you can read about my last port here. I go back to clinic June 29th, he said all my cultures, will be back then, and we'll go from there. Hopefully at that time my numbers will be up I will feel great and there will be no need for any more test at all!



Moving on! We had our local Great Strides walk that I coordinate and run on May 22nd! This is our 3rd year doing the walk in my town. We live in a very small town rural area. So I was pleasantly surprised when we raised $10,000.00!! This is a great amount considering the size and the economic hit on our town. It was a beautiful day! We had a silent auction that almost didn't happen, but my amazing friend Kallie put it together for me within days of the walk! I had also organized tables for purple nail polish (our awareness color), temporary tattoo's, face painting and blue and yellow helium balloons all for 0.50 donations! We did a balloon release right before we started our walk in honor and in memory of those with CF or who have lost their battle. It was overall a great turn out with about 150 people! We had hotdogs and chips afterward. I love doing this walk every year and the fact that it is so successful makes me very proud. I am working on planning a Motorcycle/Hot Rod poker run for September, so if anyone can help with that or has some good idea's let me know.

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