Long Time

It's been forever since I've posted something, My aunt mentioned this, so I thought tonight I will sit down and write!
I've been really busy with my jewellery business, and trying to snag in the little bit of sunshine and warm weather we had for ONE week...this summer has been a major disappointment.
I am saving up all my money to go to barbados, tonight we actually were even going to put on a fire in the kitchen...can you believe it! It is august still, did someone forget to tell someone to turn on the sun for the summer...sigh.
Flights are expensive this year to Barbados though since one airline stopped flying there, so I don't think I will get there as often or for as long as I would have liked. I always feel so much better going down to Barbados though. The salt air does wonders for coughing up all the junk in my lungs which fester and grow bacteria, leading to lung infections...more IV's and more troubles. So I love getting down to Barbados, beathing deep and coughing up all the junk. Plus it's hot, and relaxing and I love the people...I was made for the heat!

I also wanted to go visit my cousin in the States, but flights to DC are $600, tres expensive...and unfortunately I am not the greatest driver and it's a 10 hour drive, so that's kind of out of the question...sigh money money money.

I had clinic last tuesday. My white blood cell count, which is the little guys that come out to fight an infection, so when it is above 11, you know you have an infection cause more White blood cells are out fighting something, well two weeks ago my white blood cell was 21.8!! the highest it's been in a long time, meaning I still have an infection roaming around somewhere in the depths of my lungs, even though I had no outward appearance of one, my cough was not worse or anything else, so we were hoping that it was just this medication prednisone...which of course all you other CFer's know is the most blissful and amazing yet horrible and awful drug all rolled into one teeny tiny tablet of a pill, which leaves a funny taste on your tongue if you don't get swallowed fast enough. This wonderful little drug gave me diabetes from being on it, and comes with all these other wonderfully delicious (tricks are for kids?) side effects. Anyways thankfully my whiteblood cell count on tuesday was down to 16...still not in the normal range, but she's coming down as I decrease prednisone, I'm now at 13mg...I was started on 50 mg February 24, 2009. I hear they give you triple digits of prednisone post transplant...good gosh that will send my blood sugar levels through the roof! at least it's only for a day or two after transplant that your on that high of a dose. My poor little body. I need to be in the best shape before transplant...'you walk into surgery for a double lung transplant...and you walk out of it'...as they say. Thus why I am working my buns off trying to exercise like crazy, so when the time does comes, my body muscles are all in their highest performance!
So on tuesday My FEV1% was 23%, up from 22% lung function...so it isn't really an increase. The doctors would not call it an increase, but hey i will take any little bit I can get! Back in June I was 19%, and only .71 litres or something...soo I'm making progress...slow but steady progress. So to me it is an increase.
I am now at 0.81 liters of air that I can breathe into my lungs. A normal person my age and height is suppose to have 3.53 liters and 100% FEV1 lung function.... Soo you can imagine why it's a little...well a lot harder for me to do the simplest of things like climb a flight of stairs or even vaccum my new apartment ( thankfully my wonderful mother vaccumes it for me! one day I'll be able to vaccuum the place without getting winded! (which by the way I just got a fridge for my apartment! and am having my first dinner party on monday night with some friends from university!)

I worked out for 50 minutes on the treadmill tonight. An incline of 1.5 and a 5 minute warm up at 2.8mph, requiring 6 liters of oxygen to keep my oxygen levels above 90 (regular people have oxygen levels of 99-100%) 15 minutes at 3.8mph hour at incline of 1.5 requiring after 10 minutes 8 liters of oxygen. 10 minutes at 3.5 mph, 10 minutes at 3.2 mph and 5 minutes at 3.0 mph and a 5 minute cool down all at incline of 1.5. This weeks total work out score so far, 3/5 days. Woo. I attribute me feeling so good, and having my numbers increase a little bit is due to working out. On September 2nd it will be my two month anniversary of working out 3-4 times a week! yay, go me. Nothing like having a transplant assessment thrown in your face, going through hell and back of a really scary week getting the assessment done, to motivate you to push yourself like crazy in the exercise department.
I've kind of exhausted all my other choices to try to increase what little lung function I have left, I've done the IV drugs, numerous times, I've been on prednisone, a steroid for inflammation in your lungs...there isn't a whole lot left the medical world can do for me, other then a transplant, which i'm 'too healthy' for right now, thus I take up my vows with exercising. It's the only thing left that I haven't exhausted yet to try to increase my lung function. So here I am at almost two months of working out, and I feel great! My goal is by Christmas to have increased my lung function to 0.91 liters.

Alright so sorry if that was a long and boring part of my post, but I was trying to write for the other CF people who read my blog who know all the medical terms and what not, and also write for my friends and family who don't know medical terms. My dear friend Katherine once said to me, when she was sitting in the kitchen listening to me and my mom hash about a day at clinic, " I love when you talk doctor to me" ahah Sometimes we don't realize that others don't know the lingo, it's kind of second nature to us know. We're basically...pretty much... doctors....haha

Also this week it is sad I saw a friend leave for new york to start her post graduate work as a genetic councilor. She got 1 of the 24 spots offered at her program in new york, which thousands applied for! Smart little cookie that she is! (I'll probably be her first patient, or my brothers with their wives in the future haha, we are the perfect family for her to get her hands on)
It was sad though, because we are all graduated...well mostly graduated, and moving on, people are getting careers, and moving to other parts of the world...an end of an era.
Anyways I have to get back to updating my website! 20 new necklaces are going up. I'm also joining etsy. Love that site. I will post again soon! I don't have to go back to clinic for three more weeks...we've been living there this summer it feels like, so 3 weeks will be a nice reprieve.