Sunday, August 23, 2009

Week 2 of my exercise program!

I started my week 2 training for the couch to 5k. It whooped my ass yesterday! I can only imagine today haha! I definitely need to get O2, and I ordered longer tubing from my DME company. They were “delivered” both Thursday and Friday, I found a 2nd attempt note on my front door Friday when I got home from work. WTF my mom was home all day both days! Dam UPS driver didn’t see the sign that says USE BACK DOOR! So they are going to try again Monday. I really need it because I can feel my heart going out of control when I am jogging. Luckily my mom’s boyfriend moved the treadmill to our front porch so I can run the line from my room only about 50 feet instead of the 300 it would have been to the garage. I was planning on doing it this weekend but they surprised me Monday with it. I was so happy!

I had a horrible PICC dressing change on Tuesday and now I want to beg for a port. I ended up coming close to passing out and then threw up. Before I pass out I always vomit and if I can get it all out of me then I won’t pass out…I’m nuts I know. The woman was incompetent. One she was so large I had to practically sit on her lap so she could reach my arm. Two she muttered “hmmmm” and “opps” too many times for my liking as she was removing the dressing. It hurt so bad and she ended up pulling the line out some! They are measured to land at a certain spot in your heart area so moving it is not good! It was only about a quarter to a third of an inch moved but still. I can see where the line laid on the opening before. There is blood caked around it. I had to get up twice to throw up! Her final comment was “well it’s coming out Monday so I won’t worry about that”!!! I didn’t even ask because I was afraid I’d pass out totally and she is so large she can’t bend over and we were home alone and I would die LOL. So needless to say I am going to see if I can convince Dr H. to let me get a port next time!

In other news, I was asked to be involved in another study. I can’t talk about it though but I am SO excited to do it! I was also told that I shouldn’t mention any research studies I do in my blog so OPPS!!!!!!!!!! I’m not deleting the ones from the Inhaled Cipro study but I may see if I can get them to be available only to my followers.

Today is my girl Bree’s birthday! And the best part?!?!?!? SHE IS HOME FROM THE HOSPITAL!!!!!!!!!!!!! She got home on Friday! Amazing! The best birthday present anyone could ask for!

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7 comments:

  1. NoExcusesAugust 23, 2009 at 1:09 PM

    Wow super cool that you are exercising.

    Sorry to hear about the PICC. I get so squeemish about that stuff too that I have to take a sedative when they put the PICC in. It's hell :(

    I think it's odd that you're not allowed to talk about your research studies. Who told you that? The doc? If it's the Vertex studies (which I'm hoping it's that), then I know they have a confidentiality clause. So that makes sense.

    But others like Cipro I don't think you signed a confidentiality clause.

    Getting CFer's to participate in trials is our BIGGEST barrier to improved medications. I think it's wonderful that you promote study participation on your blog.

    I don't do enough of that!!!!

    FIGHT ON Cysta Amy!

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  2. Somer LoveAugust 23, 2009 at 1:19 PM

    oops how were you suppose to know you weren't suppose to mention the studies... Thats weird.

    AWESOME JOB on the workouts!!! I am trying to be better at that too! 3 day a week for 30 min are mandatory anything else is a bonus :)

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  3. KateyAugust 23, 2009 at 1:24 PM

    congrats on the exercising....keep it up girl...but defintely get some oxygen :)

    that's crazy about the nurse changing your PICC dressing. I've almost passed out a few times when it's been done to me too! A port is awesome...highly recommend gettting one!

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  4. UnknownAugust 23, 2009 at 2:05 PM

    I love your blog...I also have Cf and I was inspired to do the walking program b/c of you. I also walk on a treadmill with O2. What speed do you walk on and then what speed to run...Thanks...Keep me motivated....Holly

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  5. UnknownAugust 23, 2009 at 5:12 PM

    Great job with the jogging! Keep it up cysta!

    You never want to hear a nurse go "oops" do ya?

    Ronnie

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  6. AmyAugust 23, 2009 at 6:54 PM

    Thanks cystas and fibros :) LOL always wanted to use it haha!!!

    Amy yes it is the Vertex study but shhh lol!!! She just told me that we shouldn't talk about other studies because it could sway people in either direction. I'll find out more when I talk to her on Wednesday.

    Holly, I walk at 3.1 and then I have been increasing my jogging speed each week too. Right now I am jogging at 3.6. I tried 3.7 today but it makes me desat too much. Once I get my O2 I will probably be able to increase the speed faster. I want to go faster because I feel like I am going to run off the treadmill haha!

    Thanks Somer. I do 3 days also. I want to walk some moore buuuuuut....I only have 3 days a week off so it's kinda hard to workout on my working days.

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  7. PiperAugust 24, 2009 at 10:01 AM

    could not be any more jealous about the study (in a good way, of course ;))! seriously, my center is doing it too, and i'm about to run out and steal someone's delta gene just to get on the darn thing. wanna trade? lol!

    then again, i'm probably not the best candidate anyway, so i'm glad people like you can participate!

    way to go on the exercise. i'm not doing the couch to 5K, but i did set a personal goal of walking 2+ miles at 4 mph (my doctor recommended fast walking over jogging for me, so that's what i do). hoping i'll be able to do that at the time i'm called for transplant...hopefully we can motivate each other!

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