General Health Update

Nobody likes getting a cold.  But for most, it is a few days of being miserable and then back on to normal life.  It is not so simple when you live with Cystic Fibrosis.  For me, most common colds turn into full lung exacerbations.  While this has not turned me into a total germ-a-phobe, I do cringe when someone speaks the words "I'm getting over a cold."  It's inevitable...I soon too will have the same cold, but suffer through much more complicated recovery. 

On April 9, I went to bed with that I-think-I-am-getting-a-cold-feeling.  Sure enough I woke up the morning of the 10th sick.  Sore throat, fatigue, stuffy nose.  I stayed home for work for two days (and watched a ton of movies).  By that Friday, I could tell my lungs where now impacted, as I started coughing more and more.  Without hesitation, I call my CF Clinic to start a course of oral antibiotics. I wanted to start treatment right away.  Prescriptions were ordered for 750 mg of Cipro twice a day and 160 mg of Sulfamethoxazole-Trimethoprim twice a day.  I waited out through the weekend to start the antibiotics hoping the cold would just stay a cold.  But the lungs where not clearing up and I could tell they would not clear up on their own. 

After completing the two week course of treatments, I still had a lingering cough.  Not so much chronic, but I would go through coughing "spells" as I would cough a lot in a short amount of time.  I was concerned with these symptoms post-antibiotics.  So I went into my clinic to check in with the doctor.  I saw "the other" CF doctor at my clinic...he is very clinical.  He talks to his patients like we are all medical doctors, using terminology that the average person just doesn't know.  But the bottom line was this: my PFTs only dropped slightly, about 5%, but still above 90%.  His thoughts were I would recover on my own...not really the help I was looking for.  I generally think in more aggressive terms when it comes to my care.  I have a follow up call with the CF doctor on June 10.

Since then, I started having sinus headaches, so I think the cough is more related to post nasal drip rather than an infection in my lungs.  I am working with my ENT...but he is hard to get an appointment with.  We did speak on the phone and he had me start Pulmicort in my nasal rinses and increase rinses to twice a day.  I have used this medication before, but I don't think it is helping this time.  My visit with the ENT will be June 11.

One thing I love about my health care team is the ability to communicate via e-mail.  Although the doctors don't always get back to me as quickly as I would like, they do respond.  It makes managing my care so much easier.  We can be in communication without having to make appointments. This can help facilitate prescription, tests, and general advise.  Good stuff!

Cystic Fibrosis Blog Roll

No Two Snowflakes Are Alike is now part of the Cystic Fibrosis Blog Roll site.  This site was developed as a blog resource for Cystic Fibrosis bloggers.  The website has a blog roll of various CF related blogs.  It is a great place to start if you are wanting to find people in the CF community who are blogging or if you want to advertise your own CF blog.  Check out the website and follow the instructions if you want to have your blog added to the list.

Being One of San Francisco's Finest-Fundraising

As promised (and over due), this is the first part in my new blog series called Being One of San Francisco's Finest.  This series is to reaccount my experience with this Cystic Fibrosis Froundation event.

When I accepted the nomination to be one of the Foundation's Finest, I also was making a commitment to raising $3000.  I have been fundraising for Great Strides for a few years now, so I had some experience with fundraising, but it was hard to know if I could really raise that much money.  After all, when you are raising funds for a cause, I only know so many people that I can ask to make a donation.  Luckily, for the purpose of this event, raising funds could be done by traiditional donations, selling tickets, or securing action items.  Not only was I honored to be nominated for this, but I wanted to take on the challenge of raising this money for the Foundation. 

First, I had to come up with a fundraising plan.  I decided the best goal was to raise $1000 in each catagory: ticket sales, donations, and auction items.  To achieve this goal, I basically did two things: sent a letter to everyone I know accouncing the event, providing an invitation to the event and asking for a donations and I also sent letters to wineries asking for donations of bottles of wine.  I received very little response from both of these efforts. I felt a little undersupportive and started getting nervous about my ability to raise this money.   I needed a plan B.

I decided to focus on auction items, because I know most people wait until the last minute to buy tickets and make donations.  I knew that support would come in time.  But the auction items where not just going to magically show up on my door step.  I wanted to continue to focus on a wine country theme and shifted my goal from bottles of wine to more of a wine country get-a-way.  A night stay at a hotel, golfing, and dining. I started thinking of people I know working in these industries to ask for help. 

Skipping over the step-by-step details of soliciting auction items, I found a lot of support.  Donations were made by my friends in the community and they were very generous.  Here is where I ended up:

Foursight Wines- 12 bottles of wine
Londer- 12 bottles of wine
Clos du Bois- two bottles of wine and a private tour of the winery
Fritz- two bottles of wine
Fountain Grove Inn- one night stay and $100 gift certificate to the restarunt, Equis
Fountaingrove Gold Club- a round of golf for six.
Drinking Pink Stars-a San Francisco themed pillow and wine themed napkins

In all, I far exceed my goal of $1000 in auction items.  The final value of all items was calculated at $2200! Thank you to all of my auction item donors!

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