Tuesday, May 21, 2013

My Cystic Fibrosis Appolintment- lots to share!

My CF Clinic was today:
(its long, but has lots of info)

I have driven it before, but never by myself. I'm super short and have trouble seeing the lanes to switch to and it is a 6 hour ride in a car in one day (when stuck in rush hours traffic or construction is happening). Otherwise, it takes 2.5 hours each way. So the day can start at 7am and I won't get home til 8-9pm if we eat somewhere slow or stop at stores.

Dad & I had a great time in the car. Car rides alone with Dad = the most conversation from him ever! He gives me great advice on everything. I admire him soo much, my parents are the bombdiggity.

Now to the actual Clinic part. As you know in July of last year I was 107 lbs and 61% lung function. Highest in 2 years!!!!  Each clinic since a little down. I'm now at 54% lung function and 92 lbs. So bummerz. I could tell Doc was disappointed. He didn't lecture, he's pretty cool. He gave me a pep talk and basically said I need to kick it up a notch. The nurse asked me if I was doing the vest for 30 mins or more plus manual CPT. Are you kidding me? I barely have time for the vest usually. (oh, first problem.)

We discussed that I should probably see a neurologist if my seizure stuff keeps up. I need to get my follow up appt with the Rheumatologist for next week too. But, hey are checking my blood glucose and vitamin D next week, while at the surgeons office (Doc B wants to save me an extra needle stick- even though I don't care at all) :-) Speaking of....I HAVE to have my surgery soon. I never really talk about the hernia surgery, cuz its a lot of info. But, basically, I have two inguinal hernias (one is like a marble and one like a grape with the seed). Hernias occur with chronic coughing. The intestines push against the abdomen wall, break it down, make a hole and push through. The problem now is, they are actually pushing through. Usually I can push them back in, but they come back out with any type of lifting, running around or coughing. Which I do all three a lot. LOL. So my surgery is set for June 4th the soonest I and the doc can both do it, while still giving me two weeks of antibiotics before to make sure my lungs are okay and I'm healthy enough for the operation. So two weeks of Antibiotics and keeping healthy. Which she told me to take it easy and focus on meds...hmmmmm...

What I'm nervous about is I have already had 15% of my intestines removed. Each part of the intestines does a specific job, so it would be bad if they push out far enough that they won't go in, cuz I'm doing too much or coughing too much. That's emergency surgery, cuz it can cause gangrene and puncture/destroy the intestines that are caught. If I have emergency surgery it will be locally (which can't deal with CF stuff) by a surgeon who doesn't even know my history with surgeries and the fact I have plastic mesh that is destroyed already in me from this surgery from when I was a kid. So 2 weeks, I have to last two weeks. I can do this, I can take it easy. right???

My Doc said direct quote " Your lungs are decent enough you should be fine with the surgery" So that's good. I'd prefer "Your lungs are good, you'll be fine." But I trust my doc and surgeon, so here goes nothing. So June 4th can't come soon enough.

I'm not sure about getting a 2nd job now :-( with wanting to get my health up. Especially before the fall, cuz they will prolly decrease with me working full time and going to school full time.(plus I won't be near my parents). So I need optimal health at the start of this fall. I need to get it in gear.

(first night of compliance with Dr. B commencing)

Doing all my meds, focusing on jogging (once recovered), doing my full vest time and CPT every day, taking the nutritional supplements Doc wants me to take. If I'm compliant this whole summer, I could possibly see the payoff.

He wants to see me in 2 months instead of 3, so mid July I plan to impress him! And in other good news I gotta Vanilla coke at Steak N Shake! I never get pop, cuz the Caffiene. But I splurged! :-)


  1. Good luck with the surgery! I had a hernia repaired when I was 14 and as far as surgeries go it really isn't bad. Hopefully it will be a breeze for you!

  2. I love your ability to find the positive in the day. Hope the next two weeks flies by and the surgery goes well.