Great Strides- Hunt for a Cure

Great Strides Santa Rosa was yesterday, April 28.  Hunt for a Cure walked with 11 walkers and raised over $4300.  Thank you to everyone who walked and donated to make out team so successful.  The walk was awesome: great weather and a really good turn out.  We also had the benefit of a local sorority to volunteer at the walk, helping with registration, food distribution, and passing out water.  (Thanks to Uncle Danny and Walgreens for donation water!)

I like participating in Great Strides. It is fun to walk with friends and family.  It is also fun to meet with other CF families right here in my own community.  Being there is also very inspirational...leaving with new fund raising ideas for next year!

Also a few days prior to the walk, I was able to talk about CF and the walk on a local radio station.  Attached to the bottom of this blog post is a recording of the show...just in case you missed it!

(Late) Work Out Wednesday -6x6 Work Out Challenge

I am in the second week of the 6x6 Work Out Challenge.  The first week was awesome!  Here is what I accomplished:

Sunday April 1: 30 minutes Yoga I tired this video, which is set up into 5, 10 minute segments.  I tried 3 of the 5 segments. This was a good video, two of the segments were intense enough for increasing the heart rate and one segment was more focused on relaxation. 



Monday, April 2: 45 minutes on the elliptical
Tuesday, April 3: 40 minutes water aerobics
Wednesday, April 4: 40 minutes of Yoga.  This time I tired this video:



This is a great video, which focuses on breathing, stretching and relaxation.

Thursday, April 5: Day off
Friday, April 6: 30 minutes elliptical and 20 minutes circuit training.
Saturday, April 7: 60 minutes water aerobics...in the rain!

That is a total of 265 hours of exercise.  This week, however is not going so well.  I was not able to exercise on Sunday due to my Easter plans.  Then on Tuesday I woke up with a cold and not feeling well.  I have been home sick for the past two days and just trying to rest.  I am in no condition to exercise...I don't even have the energy to go for a walk.  I am feeling much better today, but I need one more day of rest before getting back to the gym.  Even though this is out of my control, it still feels frustrating.  I am going to continue with this challenge for the next five weeks...and just pretend this week didn't happen!

Work Out Wednesday: 6x6 Work Out Challenge

I have decided to name my current work out challenge the 6x6 challenge (Exercising six days a week for six weeks).  I am currently on Day 4 of week one.  Still early in the challenge, but so far successful.  I am planning on giving a recap of this full week during the next Work Out Wednesday post.  This post is intended to set my goals for next week.  This could alter slightly, depending on if I am able to fit in a work out on Easter.  But this is my plan.

Sunday April 8-30 minute walk
Monday April 9-45 minutes elliptical
Tuesday April 10-40 minutes lap swim
Wednesday April 11-30 minutes of yoga
Thursday April 12-30 minutes cardio, weight training
Friday April 13-Day off
Saturday April 14-60 minutes water aerobics

CF Clinic Update

I guess my last CF Clinic was rather uneventful, being that it has taken me almost a month to post about it.  My appointment was March 2.  My PFTs were at baseline, although the F25-75 was back down to 52.1%, down from 89.1%.  This was disappointing.  I thought my new treatments were responsible for raising the F25-75, but now that number is down around to my normal reading.  The doctor is not concerned with this because my FVC is at 115% and my FEV1 at 96.7%.  But I was really hoping to keep the F25-75 higher, just because that number is always so low. 

We discussed albuterol side effects (again).  I bring this issue up at every visit.  I don't like albuterol.  I am very sensitive to it as it makes me jittery.  My doctor and I go around and round on this issue.  She is of the belief that the benefits outweigh the side effects.  I am not so sure.  It is very uncomfortable to have my heart rate increased.  And it really effects my nervousness.  I am already a nervous person, I don't need that compounded by medication.  I asked to switch to Xopenex, which is similar to albuterol, but does not have the same side effects.  The doctor told me there are no studies to support that...but I have used Xopenex and I don't experience the same side effects as I do with albuterol.  I left the appointment without any real course of action and I continue to use albuterol once a day. 

The only other area of significant discussion was about stopping omeprazole.  I had been using omeprazole to control heart burn.  Since I had been doing good, we decided to stop omprazole to see how symptoms would be off of the medication.  So far I have been doing great. 

We also discussed my sinuses, which have been doing exceptionally well.  I have minor flare ups here and there, but I have not had signs of infection since December 2010.  We talked about stopping the use of budesonide in my nasal rinses.  After consulting my ENT, we have decided to stop this medication too. I have not used budesonide for about two weeks now.  Doing good so far, but I am a little nervous about not using any medications in my sinuses.  This is the first time in years that I have not treated my sinuses, so I am hoping it is sustainable.  But at the same time, it is nice taking a break and seeing how I respond.  I do coninute to perform nasal rinses once a day.

After the elimination of budesonide and omperzole, here is my current medication list:

Source CF multi-vitamin
4,000 units of vitamin D
albuterol by nebulizor, once a day
hypertonic saline, once a day
pulmozyme, once a day