Nov. 19, 2009, was my fourth anniversary. For me, life changed dramatically on that day. I remember the weather: gray clouds, a feeling of snow, possibly rain, followed by a little sun.
But on Nov. 19, 2013, there was no special celebration, no evening out. It was, after all, a Tuesday. And as much as my wife and I reflected and reminisced about this anniversary, we did not have time to celebrate. There was homework to be done, a ballet class my daughter had to attend, holiday presents that needed to be purchased and work to prepare for the next day. So I was a cog in the wheel of my family’s predictable evening routine, making my daughter’s lunch and ironing her clothes.
I guess in a way that is my celebration – to be able to say that I’m a part of this process, because four years ago I was not able to do any of these things. I have cystic fibrosis, a disease that causes thick mucus to clog your lungs, pancreas and intestines to the point that they can no longer function. And cystic fibrosis unfortunately causes numerous other adverse health issues. I won’t bombard you with the specifics of this complex disease, however, if you want more information go to ccf.org.
What I can tell you is that after living for more than 50 years with this disease that I was born with, my lungs were shot and I was in what’s termed end-stage lung disease. I was breathing with the use of supplemental oxygen and wasn’t able to do anything more than sit and watch as life marched on without me. I had been living this way for some time, with my health progressively deteriorating. For the last 10 years, I had just been struggling to survive.
But I am not alone. There are 30,000 people in the United States with cystic fibrosis. Some are in better health that I, some are in worse. Some live only a few days, but more and more of us are living longer, into their 40s, 50s and even 60s. The management of cystic fibrosis has improved significantly over the past 50 to 75 years. While infants born with cystic fibrosis 70 years ago would have been unlikely to live beyond their first year, today they are likely to live well into adulthood. There is no cure for cystic fibrosis, at least not yet.
The medical advances that have been made, however, are remarkable. Today there are medications to dramatically slow the progress of this disease. The dedicated doctors who specialize in cystic fibrosis and pulmonary care, especially the ones here in Buffalo at Women and Children’s Hospital, are second to none. I was born a little too late to benefit from all the tremendous research that is being conducted that will change the course of this disease forever, but I have no regret.
Four years ago I received a double lung transplant at the Cleveland Clinic in Ohio. This was not an available, viable option just 25 years ago, yet another example of the amazing medical progress in my lifetime. For information on organ donation check out unyts.org or donatelifeny.org. The transplant didn’t cure me of cystic fibrosis but it extended my life.
And it has changed my life. It has allowed me an opportunity to plan for my future and the future of my family. It has allowed me to enjoy what many of us take for granted. Simple things like walking, eating and breathing. The transplant has given all these back to me. So today I celebrate the mundane, such as making a jelly sandwich, ironing a T-shirt and taking our dog out for a walk. Today I celebrate simply living.