Tuesday, September 17, 2013

Oh lungs...

High School reunion and Clinic Update:


I had a busy weekend. I worked Friday night, then we drove the 2 hours back to my hometown and Saturday was packed full. I (along with 2 other classmates) put together our 10 year reunion.  It all came together and turned out pretty nice. We had the parade at 1pm with the reunion that night at 5-10pm.  I had a great time and really hope all my classmates enjoyed it too.

Then Sunday we returned home. Monday I had classes and CF CLINIC!!!

Here's the update. We re-tested my liver function. I won't know results until later this week. Also, we discussed my issues with insurance and receiving meds. My weight was VERY good at 102 lbs. I haven't been triple digits for a year and really have been struggling. However, I realized last week that my high as calorie powder has been disappearing quicker. Andrew is tricky. He has been putting a ton apparently in the hot cocoa that he keeps offering to make me.

So yay! However, the last two weeks I have been wheezy and raspy. My lungs have been really full feeling and crappy. I figured allergies... This clinic my lung function FEV1 went from 54 to 49... Ugh. Last year I was 61. How defeating feeling.  I guess everything is catching up to me. I'm going to school full-time (15 hours a week), working 16 hours at my Internship (Hospice Care-Social Work- note my director understands my immune system and health needs), and working 12 hours at Family Video. So on top of that 43 hours I'm doing research, homework, running errands (and commuting 40-80 minutes a day between work/school)... I'm doing my minimum needed therapies (2 abluterals, 2 hypertonics, 1 pulmozyme, and 2 Tobi).. BUT I need to do more.

I need to do the extra stuff. Like get enough sleep, exercise, etc. Doc. B has me taking prednisone for the next 5 days. If I don't start to respond and feel better in the next two days I will go on Cipro (since I'm allergic to the main other antibiotics) for 14 days. If that doesn't work hospital tune up. However, Dr. B thinks it could be a small infection and allergies and I will bounce back without need of IVs :-)

So hopefully my lungs feel better by Friday. I will not let myself continue to decline. The only time in my life I seem to increase in lung function is when I'm not going to school and not working more than 20 hours a week. It's really frustrating. I want to go to school, I want to work full time. BUT I want my health to go up.

So Andrew and I are going to start a more scheduled approach to our days. Hopefully we can keep up with it and it will pay off.

Lot to implement, lots to change, and a lot of work. Hope it works :-)

2 comments:

  1. Take time to smell the roses or if your allergic try freshly baked cookies! Don't stress yourself out! Take time to relax! Make sure you have Cheriz time!

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  2. yep, I don't have as much this week, so that's what I'm gonna do! Thanks Martha! ps the banana walnut pancake was amazing!

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