Going for Gold

My childhood summers in the Pocono Mountains, PA would start with the Fourth of July and wind down with the swim championships in late August. Every year from age 6 to 16 I swam with the spirited Gold Key Lake Gators. We practiced every weekday morning in a chilly lake and if you complained too much you were sentenced to a lap around the perimeter or worse yet, a swim across the lake. Our community was smaller than others in the league so every kid was needed on deck. If you could make it across a 25 meter pool, you were put in a race. At my first swim meet at 6 yrs old, I was told to jump in and swim like a frog as fast as I could. I did, and to everyone's amazement, I won. That year I ended up in 5th place at the final championship and each year thereafter I would at least place and sometimes even take home the gold.

In high school, college and in my early 20's, I was no longer part of a team but swimming would always be my first choice of exercise. As I became older and my lung condition deteriorated, it became harder and harder to swim. However, it was still a shock when I jumped in a pool shortly after arriving in Miami and found it nearly impossible to swim. The pressure of the water made my lungs feel even smaller than usual and I could hardly breathe. Where I could once swim a race with ease, it was hard for me to keep my breath and simply stay afloat. On my best days, I would try to swim short laps across the pool. My stamina was so weak that I could only manage a few laps and it was a very sad realization when I had to give up on swimming laps all together. I still loved the water and enjoyed the ocean but I couldn't go in further than where I could stand. Coming out against the slightest pull from the waves would exhaust me to the point where I would collapse to catch my breath as soon as I hit the sand. During my final months in Miami before my transplant, it was no longer safe for me to even go in the water without having a friend nearby to help me walk out.

Post transplant one of my first to-dos was to hit the beach again. In June of last year I came back to Miami for a week to look for an apartment to re-start my life. It was only 4 months after surgery, and I still had a feeding tube in my stomach. I couldn't go in any deeper than my waist, but at least I could feel the water crash against my legs again. A few weeks later back in Durham, that last tube was removed and I was cleared to swim. I'll never forget that first lap I swam in our condo's small pool. Although my body was still incredibly weak it was liberating to take a deep breath into my new lungs and submerge myself.

As soon as I learned of the transplant olympics, I knew I wanted to compete in the 50 and 100 meter breaststroke. It has been on my mind the entire year and in April I committed myself and began training. This time when I swam I felt like a kid again. I could breath well and push myself. I've been swimming about 3 times a week in pools all over Miami, one in NYC, and I even did an open water swim in the bay off Key Biscayne. I started my workouts swimming 600 meters (about 30 laps) and worked up to 90 laps or a little over a mile.
This weekend I will participate in the Transplant Games of America. The "transplant olympics", as they are nicknamed, take place every two years and are open to anyone who has had a life-saving transplant of any kind (lungs, heart, kidney, liver...) and living donors. Yes, you can be a living donor of a kidney, liver or a lobe of your lung. The events this year are taking place in Houston, TX over 4 days and, like the real Olympics, include an opening and closing ceremony.
Tomorrow as I swim my first race in almost 20 yrs, I will remember those wise words from my first meet: "jump in and swim like a frog as fast as you can". Of course I am grateful beyond words to simply participate, but I will be secretly hoping for a similar outcome and to bring home the gold.
As I swim I will be thinking of all the patients who are not well enough today to participate, of all the nurses, physicians, scientists who have made my life possible, the foundations who tirelessly fight our fight, my family and friends who support me each and everyday, and above all, someone whom I will never have the chance to thank in person yet gave me the greatest gift of all.
Become a donor today. http://donatelife.net

Thank you to Ekaterina Juskowski for the powerful and artistic photograph!!

Cycle For Life: I will

Gigi 2.0 Cycle for Life Team
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