Tuesday, June 15, 2010

A day in the life of someone with CF, Ethan's progress and a few other tidbits

Hey Friends,

Well, every person with cystic fibrosis is different but here is what my daily routine is. Wake up between 5:30 and 6:30am. Do my workout for 40 minutes, run for ten minutes and then begins the CF part of the program. I do my nasal treatments, puff on my inhaler, administer my hour-long therapy (which is 2 hours every other month since I add on a one hour treatment called Tobi)and then I go up to hang with Andrea, the kids and Magic. Andrea is a trooper as she keeps the kids as long as she can in the morning before she has to get ready for work. Ethan now loves coming down to see me while I do my therapy and Avery is slowly getting the hang of it, but she spends more time with mommy. I can't blame her. My machine is very loud and I don't exactly have a lot of room to move to do things with her. Ever since we got Diego on the Wii though, Avery has become a little bit more of a willing participant. Sometimes we have to fight between me playing Madden and her playing Diego. Guess who wins.

At night, after the kids have gone to bed, I repeat the same routine as the morning except I don't have to work out or run (and I actually get to play Madden). I take thirty to forty pills per day depending on the number of antibiotics that I'm on. I always take pills with meals though I try to hide the pills by taking them under the table. It's something I learned to do at a young age but most of you have caught on by now.

It's a bit frustrating that every time I go to a doctor's appointment, they tell me seven to ten years for a cure. Sounds more like a prison term which is fitting since at times that's what CF feels like. I am seeing evidence though that new drugs are coming out and making a difference. I hope one day CF does indeed stand for Cure Found.

The last few days have been disappointing and it's probably due to the unbearable heat (or the fact that the Braves keep trotting out Kawakami but I digress). I'm coughing a little more which Andrea noticed. I don't feel bad but I have a bit of a cough right now. I'm sure it will get better as time goes on.

Ethan had a great doctor's appointment today and that has been the highlight of my week. I call him my double miracle, while Avery is my single miracle. It was a miracle that we could conceive him (and Avery for that matter) and a miracle that he has gotten so much better. Ethan had an infarct at birth which is essentially a stroke that affected his brain. Our doctor at Piedmont was very negative about his odds of living a normal life. Every time the phone rang in that hospital, the doctor came back with worse news. Ethan suffered seizures too at a young age so we had to have him on a breathing monitor that we had to keep him on for most of his first year.

Our neurologist is impressed with his language skills and especially with his comprehension (he gets that part from Andrea and so does Avery). He is always going to be left-handed the doctor said. I wonder if he thought that was a bad thing. To my baseball friends, I have put the Braves on speed-dial. How funny that my daughter is named Avery and my son is now left-handed. Steve Avery might be their godfather one day.

My softball team continued their regular season winning streak. It's now at 9 as we destroyed our opponents on Monday. We are one heck of a team. I hope we can show that in the playoffs this time around. We're called OFF THE BENCH because my old team kept me and my co-captain on the bench and I make sure everyone plays on this team and no one sits an entire game.

I have watched "Remember the Titans" about 100 times over the past few weeks while I've worked out. Our cable doesn't work in the workout room TV so we can only watch videos. I've also watched the original "Karate Kid" about 200 times and occasionally I'll throw in "Fletch" for a laugh. I feel bad for Andrea because I end up quoting every movie and I can see by her facial expressions that she might soon injure me but I can just do the Crane technique and I should...never mind.

I'm doing pretty well but sometimes I think about the future. I can't help it as I'm at the doctor about 6 times a year right now when it used to be once or twice. I am closing in on the life expectancy for CF patients too. Am I going to need a transplant? Will I be in the hospital and lose that time with Andrea and the kids? Will my health fall apart one day? Will my kids be without a dad when they need my advice? The difference is now I realize that the voice I'm hearing is my depression and I have to just mute it and go on living. I cannot look back.

I can't really control the health aspect except to do my meds and keep up my workout routine. I can only remain positive and I am trying but I have my tough days. I haven't always made the best decisions and until recently I was terrible at coping with my problems and that made it worse for everyone around me especially Andrea.

I hate saying that CF has led to other issues in my life but it has. I was at a doctor's appointment the other day and my case worker told me that kids and young adults are now being tested for depression and high anxiety so that they can get the proper meds and help before they act out in negative ways. I wish the doctors had been this proactive when I was younger.

Still I take responsibility for my issues and will continue to work through them with the help of others who can empathize. I have a lot to be thankful for, which reminds me that Andrea and I are going on a date on Saturday. It's been too long but I'm excited to plan something fun without children, so Chucky Cheese is out.

Andrea hopes to keep her T-2 playoff run going tonight. Keep your fingers crossed. We had our first Wish for Wendy meeting last night and I think we are in good shape to go for a total in our eleven years of $1 million.

Congrats to my buddy Ross on his soccer championship and thank you Ross for publicizing my blog. I was wondering how I got so many Philadelphians to follow. You'd think I was Chase Utley.

I hope I didn't ramble too much. Stay well, everyone.

Here is today's homemade quote of the day:

"No matter how strong of a person you are, you will make mistakes. That's life. It's the strong person that cannot only admit to making mistakes but who will work to make sure that positive results can one day come out of them."

Best Wishes,



  1. Keep positive and keep inspiring people. Thanks for creating a blog and keeping all of us updated with your health/life. Hang in there!

  2. Andy! You (and Andrea) are true inspirations! I enjoy reading your blog and keeping up on your activities through FB! I'm really amazed by what you have been able to accomplish and I am so happy that I was able to participate in Wish for Wendy many years ago! Your kids are beautiful! I miss you guys!