Thursday, May 31, 2012

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!

Monday, May 7, 2012

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.

Cystic Fibrosis Blogroll

Saturday, May 5, 2012

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!