Fundraising

I have officially starting raising money for the Great Strides walk on May 18th. This will be the 19th year that my family has participated, and I'm hoping it will be the best one yet. I have set a goal of $7,000 for my team, but I really think we can beat that. If you would like to make a donation tot he Cystic Fibrosis Foundation, just click on the Great Strides link in the top left corner of this page.

I'm also selling tshirts again this year. If you are interested in ordering one, just let me know. They are $20 a piece.

Pushing us into Bubbles

The Cystic Fibrosis Foundation has now come out with new infection control regulations. There have been regulations in place for quite some time now, but they are getting more strict more frequently. Many people have seen the episode of Grey's Anatomy where there was a couple who both had CF. The man was needing a lung transplant, but his doctor said she wouldn't do it unless he and his girlfriend broke up and stayed away from each other because of the fear of getting each other sick. While a doctor would never do that, those of us with CF have been told to stay away from each other. There is a greater possibility of us catching some horrible bacteria from each other that can make us sick. With that being said, I believe there is a line between being safe and telling us to live in a bubble. Here is the email I received today from the foundation laying out the new rules and regulations.
 

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

The key elements of the Foundation’s new policy are:

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices.  

Now let me begin by saying that I do understand why they are doing this, but I believe they have taken it a step too far. The regulation that I have a big issue with is the first one on the list. Just this month, I got the opportunity to speak at Martinis and Movies with another young woman who has CF. Now, that is not possible. We raised $14,000 by speaking at that event. Now we can't join forces to try to raise money. If I ever speak at an event inside like I eventually would love to start doing, no person with CF will be there to hear me. Likewise, if someone else with CF is speaking, I won't be able to go hear what they have to say.

My parents did not raise me to live in a bubble. They encouraged me to follow my dreams and to live my life the way I wanted. Never was I told I could not do something because of cystic fibrosis. That is why I have such a hard time accepting this. There is a way to keep us safe without secluding us even further. CF is already a lonely disease.  I don't want to live in a bubble. I want to be able to participate in all of events.... that should be part of my rights as a CF patient.

I guess I just have to accept it and deal with it, because I doubt the foundation will be changing its mind. It's just sad and disheartening that we get pushed further and further away from the only people who can really understand the difficulties that we go through every day with this disease. At least we have social media... without that, I would never be able to get to know anyone else dealing with the things I deal with.

Frustrated

There really isn't much new to report in my life, but I did need to vent slightly about insurance. This week, I called in my refill for Pulmozyme (one of my breathing treatment medications). I still had a few days worth of medicine left which would give the pharmacy time to get in stock since they very rarely have the medications I need available. I received a "courtesy call" from the lovely automated pharmacy woman informing me that there would be a delay on my refill. I assumed that meant they were having trouble getting it delivered and chose to wait it out.


I ran out of the medication yesterday and decided to call the pharmacy to figure out what in the world was going on. The man I talked to was very nice as he informed me that my insurance was refusing to cover the medication because they believed that I didn't need it. Let me say that I have been on this particular medication since I was diagnosed at six years old. Not to mention, I have cystic fibrosis, a lung disease, and Pulmozyme is a breathing (lung) medication. To say the least, I was extremely frustrated with the whole situation. What is the point of having insurance if they aren't going to help you when you need it?

I called my CF clinic at Vanderbilt and got the CF nurse on the job. She called the pharmacy and the insurance company and discovered that they would only cover my prescription if it is ordered from a certain pharmacy because they get a discount. (Pulmozyme is not cheap by any stretch of the imagination.) My doctor sent the prescription to that particular pharmacy, and I gave them a call. The woman told me that they would be getting in touch with me as soon as they had it in their system. Time keeps ticking away, and I have yet to hear from them about receiving my prescription. The cherry on top of it all is that it is a mail order pharmacy meaning that it may take longer to get my medicine.

Enough with the negative for the day though! I am on day 19 of being compliant with my treatments (minus Pulmozyme today). Yesterday, we had the Great Strides kickoff, and it was fantastic to get to meet some of the parents who have younger children with cystic fibrosis. Because CF is a lonely disease, I have found that I really don't know many of the people in my own community who are dealing with the same things I am. I am so thankful to be in the position to meet with and hopefully, inspire these younger families taking on the cystic fibrosis battle.

On that note, Happy Friday! Enjoy the weekend! We are supposed to have warm weather, and I intend to spend some good, quality time outside in the sun! :)