Big news in the CF world

This came out today. This drug has been in studies for years and finally Kalydeco is here!!!

http://www.huffingtonpost.com/2012/01/31/kalydeco-cystic-fibrosis-cause-drug_n_1244218.html?ref=fb&src=sp&comm_ref=false

This will help so many.

Andy

Staying home and a hilarious response from Avery

I decided it wasn't worth it to go to Chicago. My health was at risk and it's not worth it. It's snowing in Chicago and I'd be walking quite a bit. I'm stuffed up, coughing and on antibiotics but I will get better. Am I depressed? A little but only because I feel like CF got the better of me. HOWEVER I know I made the right decision.

I'm frustrated with the insurance I took on the tickets though. They are making me fill out 7 pages of paperwork and get a letter filled out by my doctor (I feel like I'm back in grade school). I thought the insurance was supposed to make it easier. The guy on the phone asked me why I cancelled. I told him I had CF. He said "But that was something you had before the trip and we don't cover that." I said "But I have a cold which makes it worse." I felt so angry as if this guy didn't trust me. I wanted to scream, but I didn't.

I filled out most of the forms this morning and sent the rest to my doctor. I started antibiotics on Saturday and am doing a decongestant every 4 hours. I will get better.

I did have something really funny happen though. Avery, Andrea and Ethan went and saw "Annie" at the Fox (picture attached). Avery came home and said "Daddy, I'm very lucky and I know it now." I said "Awwww...sweetie. You realize now how lucky you are to have 2 parents who love you because for a long time Annie didn't have that and neither did her friends at the Orphanage? I'm so proud of you. That's an important life lesson."
Her response is the true punchline:

"No, that's not it. Mommy, let me have a whole bag of Cheetos!!!"

Kids will be kids.

Have a good one.

Andy

A Disappointing Doctor's Appointment

The great thing about having a blog is telling people when things are great. The tough part is being completely honest when things aren't so great. My appointment today was frustrating. My numbers were down 8 points after my all-time high 3 months ago. Still I'm back around my baseline so it's not like I should be freaking out.

This is the time of year where my numbers constantly decline. I'm looking at the positives. I stayed at my baseline despite having a slight cold, the weather being freezing and this time of year is always a tough one for me. I will have to continue to keep up my tough workout regimin.

Today was the first morning that I started using free weights instead of the machine. I could feel it in my muscles. I also ran up 5 floors of steps after my appointment to remind CF that I'm not backing down.

I now have to decide whether I'm taking my business trip to Chicago. It's freezing there and 10 inches of snow are expected Saturday. Is it worth it to go? Dr. Sueblinvong prescribed me Augmentin for safety. I have to weigh the factors and decide what I'm going to do.

I'll tell you one thing. In the past, frustration would have turned to sadness which would have ended up turning into depression. Today though, I can tell I'm mentally strong. Frustration has turned into anger which has turned into determination. I'm going to get right back on top in the next few months. Count on it!!!

Thanks for listening. I hope that everyone is well.

Andy

What's been going on?

Well, I have some exciting news. I have several new tour stops. I will be in Columbia, Missouri to celebrate a CF Education day and speak and I will also be speaking just outside of Dublin, Ireland later this year. I also have several other stops that we are confirming. I'll keep everyone up to date.

The Drive at 35 continues to get great reviews and selling very well. If you haven't read it, please order your copy at www.andylipman.com/books.cfm and I will sign it and send it to you.

Today I broke my record in my run, bike and swim all in the same day. I ran a mile in 9 minutes. When I first started running for speed around September I was at 13 minutes. I was able to complete 3 miles on the stationary bike in 9 minutes. My previous record was 10 minutes and my speed in September was 12 minutes. I swam 10 laps in 9 minutes which beat my original best of 12 minutes. I have a doctor's appointment this Friday the 20th so I'm doing everything I can to be in my best shape. My weight has also gone from 187 since the cruise to a lighter 182. Those double-ups on dessert on the boat didn't help much.

I've been meeting several wonderful people in regards to this book. I'm enjoying the opportunity to make CF awareness a global matter. I won't stop until CF stands for Cure Found.

Thanks for your time!

Andy

Battling my fears

Everyone has a fear of something. Here are my top 10 fears in life.

10. Not being good enough. I have a fear of waking up one day and thinking I could have done more. I learned how to fight this. Every day before I do something that I know is significant, I picture myself at 80 years old and how that 80 year old would look back and would want to take chances in life and not regret anything. Fortunately I feel like I can go back in time and make changes.

9. I fear not giving my family the life and love that they deserve. I want to treat Andrea, Avery and Ethan the way they should be treated. I want to be a great husband and father. I've had my moments where I feel that I have failed. But I have learned from those failures and will continue to work hard.

8. I have a fear of getting old and sick and dying from CF. I have this fear of a tube in my nose and an oxygen tank by my side. I fear that there may never be a cure. I try to remain positive but I'd be lying if I said that these thoughts don't populate my head from time to time.

7. Having social encounters - While I am not afraid to speak in public, I still get very nervous before any 1-on-1 encounter. I always have this fear of not knowing what to say or a level of discomfort. It reminds me of my college days and being afraid to leave my room.

6. Dealing with babysitters - since I was a kid and was beaten up by a babysitter and messed around with by a family friend, I've had a lot of insecurities about people and now having 2 kids of my own, I'm very worried with any new person we hire to watch them. I struggle with this quite a bit.

5. I'm scared of fire. I'm afraid to light candles but I've learned to do so with my kids wanting to light the menorah on Hanukkah. I burned my finger lighting a candle when I was a kid and it made it very difficult to light anything again. I've since worked on getting past it but I still have trouble even lighting matches. Good thing I don't smoke. Well, also a good thing I don't smoke since I have CF. Ha Ha!

4. Traveling. I'm not afraid to fly but I'm afraid that I will forget medicine or won't have the right adapter for my machine when I go overseas. I'm finally learning to get over the fear and am planning many out of the country trips this year.

3. Pulmonary Function Tests. While every person with CF has to give a PFT at least once a year, it's very scary for me. I know that the doctor can determine from that one test how my health is. It doesn't matter how much I'm running or working out, this is how I am judged.

2. Losing my fire. I'm afraid to lose my competitive fire because I know how much it has meant towards my fight against CF. When I lose at the smallest thing, I still want to win so badly the next time. I'm ok with that. I'm more than ok with it. I love it!

1. My sobriety. It's so important that I keep on the path of taking care of my depression and my addiction to social networking. I am more than two years sober but I have to continue to fight my issues.

Thanks for listening. I hope everyone is doing well.

Andy

It's been a quarter of a century

25 years ago today, I had my Bar Mitzvah. Why is that significant? Back then I was thirteen years old and little did I know then that I'd reached a milestone that day and not the milestone many might think. Yes, in the Jewish religion, I'd officially become a man. But in reality, I'd exceeded the life expectancy many doctors had given me. I had no idea at the time how lucky I was to be alive.

Today I am 38 years old and once again I exceeded expectations this year by beating the median life expectancy that CF patients now have. It's strange how much not only I have changed in those twenty-five years but also how much expectations for patients like me have changed.

I hope everyone is well. Stay strong.

Andy