Wednesday, October 30, 2013

3 Years of Work:Roller Coaster

Work, Effort, Time, Committment:


Princeton, MY HOMETOWN is going to be hosting their first GreatStrides Walk on June 28, 2014!!!!!! I'm so excited to get the community invovled and hope there is a great turnout! SAVE THE DATE! more info posted as I figure out the details. Sign ups coming soon too...

Now, in regards to people asking me for my secret on how I got my lung function from 38% to 64%. Nothing shocking, but here is the story:

All my life I have done multiple nebulizers every day in order to make sure my lung function stays high. However, I struggle with my lung function and was not always very compliant with meds.

During the day I do 3-4 albuteral nebulizers, 2 hypertonic saline 7%, 1 pulmozyme, and 3 caystons (or 2 Tobi). I used to skip the extra albuterals. However, the hours of sleep I get each night, my weight, and the amount of "running around" I do also affect me. I'm not always able to take the time to do all my nebs.

Naturally, while at the University of Illinois, I was on campus at least most of the day, and in the evening I was either at play practice, doing some other student organization. I was always really busy and super involved. And even though I loved it, love the people and friends I made and all the events I attended. My health definetly suffered. I was on IVs a lot while at U of I. It seemed I couldn't stay healthy. I wasn't exercising, eating right, and skipping some nebs..

If you look at my lung function chart here you can see my lung function was in the 30s until I moved home in Dec 2010 (after I graduated). It slowly was inclining after that BECAUSE:

1. I was doing more meds, because I wasn't in school full time and was only working part time.
2. I started exercising, walking at first... Then slowly added bits of jogging
3. I was taking time to eat at least 3-4 meals and 2-3 snacks a day.

Adding exercise and jogging was hard, but read about how I did it and the 5K I did HERE: in the 5K blog!

Then if you look in September of 2012 it declines again... Well, I was waitressing, going to school full-time, doing multiple clubs (show choir, theatre, etc) and I was also babysitting part time.

(Although I had the best babysitting kids, they know about my CF and that I have to do nebs, the 4 year old little boy I watch, one time even told me "Sheesh  put back in your mouth". - greatest kids ever, seriously, love them. Sheesh = Cheriz.... lol)

And of course I don't work out or jog if going to school. I skip meds/meals if too busy, etc.

So what's my secret???

Simple: When I'm not working and going to school I have time to do all my nebulizers and jog. I think the jogging is what really helps me. This may be TMI. But I have never been able to get the mucus to come out. I guess my trachea is too small. My old Doc even had trouble doing a bronchoscopy on me, which might also be why when I get that virus that causes sores in my throat I have trouble breathing. In march they kept saying they were going to have to trach me...yipes. When it comes out of my lungs, it just goes down into my stomach...another reason I have GI issues... But jogging sometimes makes me throw up a little afterwards...which is the only time I have enough force to get the crap that is killing my lungs to come out! I just don't eat before I jog...

Bottomline: I think the jogging and being complaint with meds has helped. In the last month with my being in and out of the hospital, not being able to go to classes and work, has given me time to do my meds. Plus, the two Antibiotic IVS, 1 Steriod IV, and two oral antibiotics probably helped kill any infection I had going on that was hurting my lung function!

I just make a plan or schedule. I follow my routine to be able to get as much done as possible and hope my work pays off at Clinic. I have a large Dry Ease Board in the kitchen with everything on it!

 So we'll see how everything is at my next clinic on November 22nd.

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