Donate or Register to join us here: http://www.cff.org/LWC/GenevieveGuermont
(A note on this blog: This is "my story" as I wrote it for the CF foundation to publish to encourage participation in the Ft Lauderdale Cycle for Life on Jan 25th. For those of you that know me or have read previous posts, it may be a bit repetitious but I wanted to post it here in tact as it is my current perspective on my history and future with CF.)
I will.
I have always wanted to ride in the CF cycle for life, but I have never been healthy enough to participate.
My story with CF begins when I was diagnosed at age 16. Although I had had more colds, flus and infections than most kids, my childhood was fairly healthy and the diagnosis of CF came as a shock to my family and I. A day before, I was a teenager with a whole lifetime ahead of me. Then suddenly, we were faced with the harsh reality of CF, an incurable, chronic progressive illness with an average lifespan of only 27 yrs.
Not knowing how my unique story with CF would unfold, I forged on with my life as planned. I headed off to college, graduated and started a career. Cystic Fibrosis was always there. Sometimes just as maintenance with inhaled medications, physical therapy, handfuls of pills, coughing fits and sometimes worse with infections, fevers, exhaustion and what seemed like never-ending cough. At its very worse, it was ER visits and hospital stays for infections that needed weeks of IV antibiotics. Managing CF was always a fine line, a balance between taking care of myself, putting my health first and living my life to the fullest, knowing that it may be shorter than most.
For 14 years I was able to manage my CF and keep up with a career and a full life. However, as the years progressed my health deteriorated. I was sick more often and for longer, requiring harsher antibiotics and each time I would not quite fully recover, losing a little lung function each year. I required more maintenance therapies, more rest, and I was slowly taking more and more of the activities I loved out of my life. As I turned 30, it became clear that I could no longer keep up with my full time job. Having to stop work was heartbreaking for me, it felt as though everything I had painstakingly built was being taking away by CF. I eventually came to look at it as a new chapter in life, one that would call on my courage to be self-aware, and make mature decisions not guided by ego. I left work, my home in manhattan and decided to make the most of my "retirement" by moving to the beautiful beaches and warm salty air of south Florida.
For two years, I enjoyed Miami and although the warm weather offered some relief, it became increasingly harder for me to live on my own. After a hospitalization in May 2012, I lacked the stamina to take care of myself and spent the summer living with my parents in hopes of rebuilding my strength. I returned to Miami in September 2012 but my first clinic visit revealed my lung functions were lower than ever and I went back into the hospital. Further exams showed that my heart was incurring damage from the poor condition of my lungs and my doctor told me it was time to begin considering lung transplant options. Over the course of the next month, I continued to decline and I was flown to Duke in Durham, NC for immediate evaluation for lung transplant.
The next year proved to be the most difficult and most beautiful of my life. The lung transplant process was harder than I could have ever imagined. But now, almost a full 12 months past my surgery, I feel better than I have my entire life. I have returned to Miami and I am back to living an independent life. For the first time that I can remember, I am not plagued by a deep cough. Exercise has become an enjoyable challenge rather than an exasperating fight against suffocation. I have gone swimming, surfing, hiking, biking and even ran a 5K in October. Although a second chance at life and an opportunity to be freed from the constraints of CF lungs, lung transplant can not be viewed as a cure for CF. Unfortunately lung transplants have many complications and despite the best care only 50% of patients are alive 5 years post-transplant.
I have always wanted to ride in the CF cylce for life, and on Jan 25th, 2014 I will. I am not only riding for myself - to prove that I can, I am riding so that no other CF patient has to go through the ordeal that I have gone through. So that children and young adults today with CF don't have to watch their health deteriorate despite their best efforts. So they don't need to spend their lives thinking and planning for a limited future. So that a lung transplant isn't their only chance to breathe an unrestricted breath. This is a realistic goal within our grasp and as long as I can continue to fight for cure for CF, I will.
I would be remiss not to take this opportunity to say out loud what I think each day, to say thank you to my donor, my anonymous hero, and their family who was able to offer hope in their moment of greatest despair. To them I am truly eternally grateful.
Gigi 2.0 Cycle for Life Team
Donate or Register to join us here: http://www.cff.org/LWC/GenevieveGuermont
