Wednesday, April 27, 2011

Radio Spot

On Monday, I was on a local radio talk show to promote our upcoming Great Strides Walk and talk about life with CF.  A local woman who is a grandma to a grandson with CF works for a local radio station, KSRO 1350.  I guess for a few years now she has been setting up air time for people in the CF community to go on the air to promote the cause.  Another mother to two children with CF (her kids are now in their twenties) was scheduled to talk, but she didn't want to go on the air alone.  I had met this person at my Chevy's fundraiser.  She remembered me and contacted the Foundation to contact me and see if I wanted to participate.  I said yes without hesitation. 

I arrived at the radio station a little early, so they gave me a tour of the studios.  Four different stations are broadcast from this location.  It was fun to see the operations of these studios.  Just before our air time, the DJ Steve Jaxson came out and spoke to us for like 2 seconds.  I know he does this as his daily job, but there was apart of me that wanted to rehearse the whole show first so I would know what to expect.  I started getting nervous...what am I getting myself into?  What if I got on the air and totally froze? Everyone assured me that I would do fine.  The DJ would keep things going and give prompts on what to talk about.  Everything would come naturally.  Which is basically what happened.  Once I got talking, it was no different from just having a conversation with someone about my life with CF.  The fact that a whole group of people I couldn't see were listening to me never really crossed me mind.  It is really an easy way to practice public speaking skills because you can't see the audience. 

Although I was able to talk about a lot of good, informative information, the interview ended and I felt like I had so much more to say.  I had a great time and I hope to be able to do something like that again in the future.

Wednesday, April 20, 2011

Hypertonic Saline 7%-Day 1

Yesterday I started a new treatment to my routine: albuterol and hypertonic saline, both nebulized. The first hurdle with this treatment was actually getting the saline solution.  When I went to the pharmacy to pick it up, my prescription had been canceled.  As the pharmacist explained it to me, he simply thought the prescription was a mistake (?) and did not fill the order.  After explaining that yes I need the saline solution, I was then told it was not a medication that was in stock and it would have to be ordered.  Thanks Mr. Pharmacist for not only canceling the order, but also not having the medication even available just on the chance that I really needed it.  I was finally able to pick up my prescription Tuesday.

I've had nebulized albuterol before.  It usually makes my heat beat increase, but I didn't notice that last night.  The hypertonic saline is a pretty intense treatment.  It instantly irritated my throat, almost like a mild burring sensation.  It triggered a cough almost instantly.  It was a productive cough and I could immediately see the benefit of this treatment.  No noticeable side effects at this point.  Looking forward to seeing my reaction over the next couple of days to see if the results continue to be so noticeable. 

Tuesday, April 19, 2011

CF in the Community-Frank's Walk

My CF Clinic puts out a quarterly newsletter about various CF topics.  The most recent letter included an interview with a young man named Cody Frank, who is about to embark on an incredible journey. Cody, who has CF, is going to be hiking the Pacific Crest Trail.  This trail starts near the California-Mexico border and ends near the Washington-Canada border.  The trail is 2650 miles long and Cody anticipates walking about 25 miles a day.  A picture of the trail is provided below. 

Cody is dedicating this walk to his sister Jessie, who lost her life due to CF in 2009.  He will be carrying her ashes on the hike, a promise he made to her as her life was coming to an end.  The hike starts in 11 days.  Please show your support to Cody.  You can like is facebook page, follow his blog, donate in support of his effort, or check is webpage from time to time to see the progress of his hike.  If anything, please share his story.  I'd like to see full support of the CF community behind Cody and his hike. 

Tuesday, April 12, 2011

CF Clinic Update

Friday was my quarterly clinic visit.  I was not positive this was going to be a great visit. About a month ago, I had started a Cipro treatment after having difficulties on vacation.  I did a three week treatment and felt 95% better when my treatment ended.  About a week later, I started to feel run down, like I was getting a cold.  Since then my nose has been stuffy and I have been coughing more.  Only having a week off of Cipro before coughing more had me on alert...usually I get a good three to four months before needing to evaluate the need for antibiotics.  But a week?  Not good. 

PFTs, however, where telling a different story.  I had my highest FVC ever and my second highest FEV1.  My FEF 25-75 was the lowest ever, which I always test a lower number in this category.  In fact, this number varied by nearly 20% just from doing three different tests.  My doctors thoughts:
  • She explained that the numbers are only one line of evidence for managing care and she considers much more when thinking about treatments.
  • Her dilemma with me is whether to treat my symptoms with antibiotics or not.
  • She was not concerned with the low 25-75 number. 
  • We talked a lot about why the numbers can be great, but not really "matching" my symptoms.  I know I am allergic to grass, so there may be an allergy component to my symptoms. 
  • We decided to go a more conservative route to treat this set of symptoms.  I am going to start hypertonic saline and albuterol.  I am going to give it a trail run and check in again at next clinic to see if this helps with my symptoms. 
After the visit, I head over to Union Square in San Francisco for dinner and shopping.  I found great tops at H&M! My favorite.

Tuesday, April 5, 2011

The Sights and Sounds of a Comic Book Convention

April 1-3 was our annual weekend trip to San Francisco for WonderCon, a three day convention of all things geeky.  My husband is a huge comic book reader...he reads about 40 books a month and usually spends about $75-$90 a month on books.  Although I am not a comic reader, I do enjoy the convention.  It is so much more than comic books.  There is art, promos for new movies and tv shows, costumes, cartoons, games, and a variety of retailers. 

Here is my top ten list of the things I did last weekend in San Francisco:

10.  I met Cindy Morgan, who played Lacey Underall in Caddyshack.  She was super nice!
9.    I saw a promo for Cowboy's and Aliens, a new movie direct by Jon Faverau.  Mr. Faverau was there to talk about the movie.  He was really funny!
8.    I will buy almost anything with a dog on it.  I found three prints with cute dogs this year.  Now I just need to figure out where to display them.

7.    A company called "Kaboom" is a kids comic book company.  They publish comics based on pixar characters, like Car, Toy Story and Monsters Inc. and they have a huge line of Muppet comics.  I was so excited to find they were having a 2 for 1 sale.  I purchased four trades: Toy Story, Monsters Inc., Muppet Snow White, and Muppet Sherlock Holmes.
6.   Speaking of Kaboom, Travis Hill, Kaboom artist was there to draw personalized sketches for a small fee.  He drew me a sketch of Mr. and Mrs. Potato Head from Toy Story.
5.    I love the costumes at this convention.  It is fun to see the creative costumes people come dressed up in.  This year I dressed up as Princess Leia.  The funnest part about dressing up is walking to the convention from the hotel.  It is funny to watch the reaction of people.  Classic!

4.    I bought a limited edition Peanuts comic book.  Only 100 available and only being sold at the convention.  I received #97.
3.    Ethan has connected with a lot of other comic geeks in the area.  They are a great group of people and a lot of fun to hang out with us. And the best part about hanging out this year...I was not the only female!
2.    I loved drinking a huge latte in my Princess Leia costume.


1.   I found a company that was selling plush internal organs including LUNGS! I was so excited! This company called i heart guts sells all kinds of organs including hearts, kidneys, etc. I am keeping my lungs in my treatment area to keep me company.  I love them!