Thursday, February 20, 2014

A Showdown with CF this Friday

"Why Me?"

I ask those two words a lot more than people know. I have moments where I get so frustrated and just want to give up. I'm fortunate to have a strong and supportive family who won't let me quit. The people who primarily accept the role as my ass-kickers are my parents who had to live with me for the better part of 2 decades and my wife, Andrea, who has had to live with me for the last thirteen years. Sometimes I need a kick in the butt when things aren't going my way. Don't we all?

I got a nice note from a 12-year old in California a few weeks ago who said that I'm his hero because of the way I fight this disease and publicize it. It made me feel really good. When I was a kid, I didn't have any CF role models. I'm not saying I'm a role model because I'm far from perfect but just the fact that I'm relatively healthy at 40 years old helps a young kid with CF to believe that he or she can do it too. I hope that my example won't be as rare a decade from now. Heck, I hope there is no such thing as cystic fibrosis by then.

Thanks to the little boy who made my week.

A past I'd prefer to forget

I remember the last time I quit. I was on IVs about 6 years ago and I'd had them off and on for 5 weeks. My doctor, at the time, went out of the country, my IV's were pulled too early and I had several serious allergic reactions while on the drugs. I freaked out and became a shell of myself. I quit on my parents that month. I quit on my wife (who was pregnant at the time). I quit on my daughter. Worst of all, I quit on myself. Not a day goes by that I don't regret how I handled that situation and how I pained the people that I love. Part of me never wants to deal with that physical pain again but another part of me wants a second chance to prove that I can overcome it mentally.

I still battle a lot of bitterness regarding the 40 years I've battled this disease. It sucks that I spend over 2 hours of my day doing treatments when that time could be better spent hanging out with my family. I hate that every doctor's appointment seems to feel like a life or death scenario. Lastly, I hate that I will someday have to explain to my children about my life expectancy and that they are both carriers of the disease that killed their aunt and that their father fights everyday.

When I was younger, I let a lot of this bitterness towards CF consume me but I try not to do that as much now. I try to look at the positives in life but I do have moments when all of these fears and frustrations rear their ugly heads.

The Comeback

A few weeks ago, I began my comeback against CF. I went back to Lori at Bodyrich Fitness and had two extremely grueling 30-minute sessions. Some of the things we do on a weekly basis include running at high speeds on the treadmill, running up 5 and down 5 sets of stairs and doing tons of bicep and ab exercises. I also spend most of that workout fending off her barbs that she uses to motivate me. I love it. Lori definitely pushes me more than I can push myself on my own.

Rising up against CF

I started on TOBI earlier this month. I tried a new technique which definitely helped lessen my coughing. It involved keeping my neck straighter and raising my chin more. The great thing about the new TOBI Podhaler is it only adds about 5 minutes to my therapy morning and night as opposed to the old aerosol which added roughly 40 minutes twice a day. I also learned a better way to clean my nebulizers which decreases the likelihood that germs will attach themselves to my equipment.

Friday - The Nerves are setting in

As I'm writing, I just found out my sputum culture results. For anyone who has had to wait on results from a doctor's office, you know what that wait can feel like. It can be grueling at times. When I finally received the results, I was both relieved and concerned. Most of the bacteria they found were the same as usual and there was no trace of pseudomonas which is the scariest CF bug. However they did find one bacteria that was not oral antibiotic sensitive meaning IV antibiotics will probably be necessary. After consulting with my doctor at Emory as well as 2 of my previous doctors, I have decided to take another pulmonary function test this Friday (just 3 weeks after my last one). If the results are worse or un-changed (and sadly I suspect this will be the case), I will go on IVs. If they're better, I will stay the course. I'm trying not to go into this as I sometimes do as just the patient. I can't go into this having my fears block me from making wise judgements regarding my health. I'm looking at the determination whether to go on IV's more as a family decision rather than just my decision. I want to do whatever it takes to keep me strong for not only me but for my wife and my children. I owe them that. The likelihood is that I'll have to go on IV drugs for 10 days to 2 weeks before I can do another PFT to determine if the drugs are working.

I'll keep everyone updated after my Friday appointment. I hope that all of you are doing well healthwise.

Regardless of Friday's report, I won't give up. I can't. I have too many people who I love who depend on me to fight this disease at 100% every second of every day. They won't be disappointed this time around...

And neither will I.


"Every day with CF is like running for your life...but it's a race I plan to win!"