Monday, October 14, 2013

My numbers may be down but my outlook on life is far from it...

"Andy, your numbers are down. What's going on?"

Those eight words bring up so much anguish.

Those were the exact words spoken by my doctor this past Friday.

I didn't know what to say when the doctor asked me that question. "What's going on?"

I hate the CF cough!

When I was younger, I knew what it was. I was lax in taking my meds. I wasn't getting enough exercise. I wasn't doing my treatments everyday. I could just say "Ready or not, here I come!" and I'd be back on my feet as long as I was complying with my doctor's plan. It was that simple.

It's not that easy anymore and it has nothing to do with me not complying.

It's age.

I'm 40. CF is coming for me. I know it. My doctors know it. My body knows it. That means I have to work that much harder to beat it. I caught a virus over a month ago and I can't seem to shake it. My numbers are down 8% and if this continues I'll be on IV meds right after Wish for Wendy. This comes at a tough time because we're in the midst of moving.

CF is winning right now but unlike the past I won't let depression get to me. I will prevail.

I know that I have to take a stand and fight this and so I began last Thursday (one day prior to my doctor's appointment) as I knew my appointment was not going to be very positive. I started by hiring a personal trainer. Jumping rope nearly killed me. I was coughing up a storm. I had to stop 25 minutes into a 40 minute workout. I know that if I keep working, I'll get there. I'm doing a few other things to get better. I'm eating a little more to get my weight up. When fighting an infection with cystic fibrosis, it's important to have some weight behind you. Can you say "Hello Gummy Bears?" Ok, maybe not that extreme but I am grabbing smoothies after every workout session and eating more snacks during the work day (mostly gluten-free).


I'm delegating many of my responsibilities for Wish for Wendy to the CF Foundation. I used to hate delegating. Now I'm giving myself no choice. I'm fortunate to be working with Linda Murphy who does a great job there. I'm also making sure that I keep to a strict regimin by doubling up on Pulmozyme, making sure to take all of my antibiotics on time and keeping in good shape by walking Magic everyday and working out to the best of my ability. I'm very fortunate to have Andrea who has taken the bull by the horns with everything around the house and who is amazing with the kids. I love her so much. Thanks honey for all you do.

It's difficult coughing and seeing people around me notice. Andrea asks if I'm ok. My trainer is concerned and is worried about pushing me. My mom and dad are constantly checking on me and telling me to rest. The thing is I can't lay in my bed and just accept the fact that I'm sick. I need normalcy. Of course, I also have a sister who is a reality TV star so I'm not sure I even know what normalcy is anymore.

I need to live my life. People who don't have terminal illnesses don't get that. When I get sick, I don't stop exercising, I certainly don't lay in bed and I don't call in sick to work. I do the opposite. I work out harder. I constantly think of ways to get better. I never want to say that I could have done something to get better and didn't. I have to be mentally strong when battling a physical issue. In the past, I would have collapsed onto my bed, pulled the covers over my face and hoped that life would just end. I can't do that anymore. I have too much responsibility. I have Andrea, Avery and Ethan and I cannot and will not let them down.

I will not let these three down!

I wish I could just repeat those words from my youth, "Ready or not, here I come!" It's just not that easy. Not anymore.

The doctor e-mailed me Tuesday with my culture results which is always scary. Imagine waiting to hear if you are really sick or worse, need to be hospitalized. That's what it's like waiting to hear if I have pseudomonas or some type of bacteria that is not antibiotic-sensitive. The bright side is that both bacteria that I cultured are sensitive so I'm on two more oral antibiotics. The good thing is that I finished a previous antibiotic and just finished my 28 days of TOBI. Just call me CVS.

I'm trying to deal with all of this while dealing with a move, running Wish for Wendy, captaining my softball team, working a full-time job, being a dad and being a husband. The latter two are my top priorities. I have to be healthy for my family. I'm not asking for pity. I chose all of these roles and to be honest I enjoy them all. It just sucks when CF rears its ugly head and I'm forced to make changes.

I am starting to see mild improvement. My cough is slightly better. I do feel a little bit more energy. I'm able to get through my workouts with my trainer without being too winded. Things are moving in the right direction and I will make sure that they continue to do so.

My plan is to be 80 to 90% by Wish for Wendy which is in another 10 days or so and I'd like to play for my team in the tournament. I've been down and out for more than a month now so I realize that my goal to be relatively healthy in a third of that time is pretty unrealistic. Doctors would probably be a bit skeptical. Of course, if I believed in medical books and doctor's predictions, I would have died years ago...

But I'm still here!

After much thought, I now have a response for those words "Andy, your numbers are down. What's going on?"

A comeback! That's what's going on. Cystic fibrosis is going down! Ready or not, here I come!

Maybe it is that easy.


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