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

Gigi 2.0 is running!

I am running...
To build strength
To prove that I can
To honor the life of my donor
To raise money and awareness for the lung transplant foundation
To visit the beautiful fall foliage of NY
To use these healthy lungs I was gifted to the fullest
To tell my body we will conquer
To inspire
To experience
To celebrate
And because I can.

I've been training to run a 5k since Feb 8th, 2013. At 4pm that Friday I was wheeled into the operating room on oxygen with failing lungs. Over the next 5 hours, my lungs were removed and replaced with the healthy lungs of someone who had just lost their life. I woke up in the ICU and was cautiously weaned off the ventilator until I took my first new breath on my own. Twenty-four hours later I would be helped to my feet and I summoned all my strength and courage to take two steps to relocate into the chair next to the bed. It was a complete and total re-start: I had very little muscle mass left and I needed to learn to not only use my new lungs but to trust them. I can remember walking on the treadmill for 5 minutes at 0.1 mph and it was the hardest thing I have EVER done. By the time I left the hospital, twenty-five days later, I could cover a mile over the course of a day.
The following three months I was in physical therapy 3 hours a day, 4 days a week. When I started, I was exhausted walking at a snail's pace for 20 minutes. By the time I finished, I could do 40 mins straight on the elliptical. Since then I've been, swimming, biking, surfing, paddleboarding, hiking, kayaking and finally last month, I started running.

At eight months post-transplant, I will be running the Fall Foliage 5k in Rhinebeck, NY near my hometown, on Oct 13th, 2013. If you are nearby, join me in the run or come out to show your support!!

To contribute to my cause and help fund research to improve long term outcomes for lung transplant patients, please make a donation on behalf of my team to the Lung Transplant Foundation here:
http://www.firstgiving.com/fundraiser/gigi2-0/lungapalooza-2013-a-walk-for-breath

Details:
Rhinebeck is an easy, beautiful ride by car or train from the city. The run starts at 10am, so it is possible to hop on the train the morning of and make it to the start on time.

Register to participate here:
http://fallfoliagehalf.com/

If you are interested in coming, message me and we will work out the final details!
Xoxo
Gigi 2.0

New and Improved

Well it's been a while and once again I have a lot to catch up on here.
I fought a round of rejection and won. I was hospitalized for pancreatitis twice. I had an infection in my incision, 80+ staples removed from my chest, my IV line removed and I celebrated my 3 month lung-iversary. I am stronger, breathing better and feeling better than I can ever remember, EVER. Overall it's been a great month!!

So yes there have been a "few bumps in the road" as we all say in the transplant world. Firstly, pancreatitis is a bitch. It felt like the worst hangover imaginable that lasted all day and all night for 5 days straight. Plus I had the misfortune to experience it twice in 3 weeks. My doctors believe they found the cause and it was easily remedied by adjusting my antibiotics. My bout with rejection was more scary than painful. Rejection is not uncommon the first year after transplant and there are several progressively more severe options for treatment. Luckily I responded to the first line of treatment and besides some puffy cheeks I didn't experience any nasty side effects. So aside from setting me back a few weeks on my official discharge date from Durham, my bumps thus far have been easily managed and have not affect my lung performance. I am a happy girl.

Yesterday was big day in my recovery. I spent my first night alone, on my own, fully independent in over 9 months. I made myself breakfast, I took my medications, I fed and walked juju and I even did a few dishes. Such simple, boring everyday tasks that feel so good to do entirely for myself. I thought of this moment from my hospital bed post transplant and it seemed impossibly far away. It still astounds me to think of how much progress I have made in just 3 1/2 months. I have erased over a decade and a half on my lung function. My lungs are performing similarly to when I was 18. And even then I was coughing everyday, tired easily and hospitalized often for pneumonia.

This weekend my NY girls are visiting and I can't wait for them to see me so strong. Like many of you reading this post, they have been by my side through the many ups and downs of CF. For years now my friends have quietly made adjustments for me, carrying my bags, dropping me off, coming home early, helping me with my medications and treatments, and just always trying to make things as easy and as comfortable as possible for me. And now this weekend I can laugh without coughing, I can carry my stuff and I plan to make them struggle to keep up with me! :)

Although my lung function and energy levels are great, the plan for my recovery is still not completely finalized. I may have to have a surgery on my stomach next month to prevent any acid reflux from harming my beautiful new lungs. I have a few more tests on my stomach and will meet with the surgeon to discuss the first week in June. There is also a small amount of unresolved fluid hanging around my heart and lungs causing some concern that it could be infected. So I may need to undergo a needle biopsy to directly test the fluid. Once these issues are addressed I should be cleared to go home, hopefully by early July. I've decided that "home" will be Miami. I miss the beaches, the beautiful weather and the laid back lifestyle. In due time, I will of course come back to visit NYC to do everything and see everyone I love as the new and much improved Gigi 2.0.

Breath by breath, step by step, day by day...

Gigi 2.0 Beta

Firstly, I hope that most of you have been able to catch some news on my recovery through bits and pieces on FB, random text messages and the "grapevine" of friends and family. I'm sorry I haven't been writing much. The slew of medications I am on and simply the exhaustion from keeping up with my demanding medical routine was giving me frequent migraines making it difficult to write anything substantial.

There is no other way to put it than simply, a lot has happened. It has been more than the sum of all my journeys to far away lands, many mis-adventures and hours of education combined. In some ways its seems my whole life has been boiled down, distilled and purified over the course of a few months. There is certainly more than I can possibly ever confine to a blog post, but I am going to do my best to convey my experience in words and photos.

To get started, YES I am out of the hospital!!!! I was given my freedom exactly three weeks ago. Although I couldn't walk out on my own - hospital policy to be in a wheelchair- I was able to snap a quick photo of my parents & I standing in front of duke hospital on that glorious evening and I walked the remaining few steps into the car. It was a beautiful ride home. Since I am a regular at hospitals, I know those first few moments outside the sterile white walls should be treasured. It is a beautiful feeling to see the outdoors without a window pane in the way. Although only a few weeks, the elapsed time felt like months. A parallel world filled with beeping IV poles, chest tubes, unlimited monitors and zero privacy that all serve constant reminders that you are very, very sick. It is not as though I am suddenly living a carefree, medical intervention free existence, quite the opposite, but as you can imagine it feels sooooooo good to be "home".

In the past three weeks I have made huge improvements. Each day a little better than the day before. My schedule is busy. I have multiple doctor appointments a week and some last the whole day. When I am not in clinic, I am at a 3 hour physical therapy program. When imam not at PT I'm at home much eating, sleeping or taking medications. I'm taking over 60 pills a day broken up into 5 different times, 3 inhaled medications each twice a day and I have a feeding tube that runs overnight. It's a lot to manage and to get comfortable with as most of it is completely new to me. The medications are harsh but tolerable. My chief complaints at this point are frequent migraines, most likely a side effect of the meds and exhaustion, and pain from the incision and its 80-something staples. Yes, staples. Ouch. Oh so also I am on lots of pain meds and those make my brain foggy and forgetful. So please be extra generous to me with regards to spelling, grammar, and general making sense of things. ;)

Now to the fun part... My NEW lungs. My very own working set of breathers. It taken us some time to get used to each other, as my dad accurately pointed out shortly after my surgery, "just like shoes, you have to break them in". Everyday we are becoming more comfortable and more confident with each other. I am walking around not on oxygen, not out of breath and not coughing!!! And of course I have attended to my first item of duty, taking juju for a walk. I have been making a list of of all my new lung firsts and ill share them with you soon. My firsts this weekend were walking 2 miles nonstop, at a brisk 3.5mph no less, and going out to the diner with a friend for lunch.
For now and forever I am taking things breath by breath, step by step, day by day...

Thank you again for all the messages and support!

One day at a time...

When Genevieve had this great idea to start a blog, what she really meant is that it would be a great idea to start a blog where all of her friends get a chance to be guest bloggers :)  My turn! And I apologize in advance for the length – just so much I want to share!

Let me start off by saying that she is doing really well. Brianna previously mentioned that G had a rough weekend, and gave you all of the medical lingo (in case you don't know, it's actually Dr. Brianna, which means we'll leave the medical updates to her)!  I won't dwell on details, but those were the hardest few days for G so far, physically as well as mentally.  It was bad, really bad, but the bottom-line is that she pulled through, and is back on track.

Michelle and I drove down earrrly Tuesday morning, and when we arrived at the hospital, we were told to put on protective gowns/gloves to prevent infection.  Before we walked into the hospital room, I was honestly imagining the worst, but to my surprise, she looked great, even though showering has dropped to the bottom of her list of priorities :)  She had just come out of intensive care that morning, and continued to have difficulty talking, due to a surgery she had on her vocal cords last week. Anyway, she welcomed us with big hugs, even though she barely had enough energy to pick up her own chapstick the day before.  Her body went through a lot of trauma over the weekend, so she's slowly trying to rebuild her strength and stamina.  She compared herself to a baby, who has to learn everything from zero, but she's making progress, even able to stand up on her own now. 

G is on more meds than I can count. She has an IV pole with bags and bags of medicines hanging next to her bed. There are huge tubes coming out of her body for all kinds of purposes (ie suction, drainage, etc.).  The slightest move in the wrong direction can cause major pain.  We saw where the surgeon made his incision across her chest, and the staples he used to close her up.  I have visited her in numerous hospitals, but the atmosphere here is very different. It's hectic, and you can feel the sense of urgency in the air.  People are constantly coming in and out of the room at all hours – nurses, doctors, physical therapists, stress management coaches, etc. It's overwhelming and stressful, even for a visitor. I may or may not have almost fainted 3 separate times, and G not so subtly reminded me that this is why I switched out of pre-med while we were in college :)

The first highlight of the visit came when her doctors gave her the OK to eat something of honey-like consistency (after not eating or drinking anything for 2 weeks), and like Bri said, for G, this means fancy homemade truffle-infused mashed potatoes made by Claude!  If only I could have captured the look on her face!! Pure bliss!!

The second highlight was during her treadmill exercise…it's hard to believe she had been bedridden for the previous 4 days (and constantly connected to an oxygen tank for the past 6? months), because she did the treadmill not once, but twice that day!!! And although I've seen countless people finish all kinds of races, I have NEVER been so proud of someone for walking 15 minutes at a speed of .6 mph (you read that correctly --> .6 mph would equate to 1 mile in 100 minutes).  But she did it with her head held high and with a smile on her face.  This is somewhat of a personal triumph for me, because she has always been my #1 cheerleader for whatever race I choose to do, whether it's in New York, Hawaii, Kentucky, wherever, she always has her 'Go Deena' placard ready to go! This was the first time the positions were switched, and it was really touching for me to be on the sidelines cheering her on for once…definitely one of the many moments to bring tears to my eyes.  Now she's already up to 1.0 mph!! Put the Ethiopians and Kenyans on alert!! ;)

It was an emotional visit for all of us. Lots of tears, good ones and bad ones.  She talked to us about moments when she's sad and/or scared. Like when she feels like she is doing everything she is supposed to be doing, everything that is within her control, yet something can and does go wrong.  She ends up feeling helpless, anxious, powerless, etc. She also feels a sense of obligation to the previous owner of the lungs to do them justice. And she will. It's just daunting.

There were also lots of laughs, the deep hearty ones that used to make G go into a coughing fit, but during this visit, I don't think I heard her cough even once. In the 16+ years I've known her, not a day has passed without a cough. It's hard to believe this is her new normal.  Woo hoo to healthy lungs! 

The highlight of the highlights has to be the Post Love Project, organized by Sarah, another childhood friend of G, who collected 'postcards' from friends, and friend of friends, to share memories, stories, pictures, artwork, etc. with G.  We were lucky enough to be there when the package arrived. I described the scene as 'Christmas in Durham', and it really was, although in this scenario, I guess Ellie plays Santa :)  G had no idea this surprise was coming, and as she opened the package, her expressions went from confusion to excitement to utter joy. There were postcards from childhood friends, with whom she hasn't spoken to since 6th grade, or friends from Gold Key Lake (her cabin in the Poconos), college friends, high school friends, teachers, childhood crushes, and postcards from as far as Uganda, Zimbabwe, London, France, New York, PA, NJ, MA, Miami, New Orleans, and more. There were pictures of her as a little girl in dance class or swim team, and pics from college when she dressed up like a space alien at the Science Museum in Boston to win tix to London (no, she didn't win), pics of her convincing friends to swim across the Gold key Lake in the Poconos and then being 'banned from the beach' for the rest of the summer, drawings from her friends' babies, vacation pics, motivational quotes, and on and on and on.  Each story, picture, or card was unique and heartwarming.   It was such a special evening, and it really touched her to see how much love and support there is for her. 

Although it did break my heart to see her in the hospital, I left there feeling inspired and hopeful. I'm feeling optimistic about her progress. Her attitude is upbeat and positive. She has a wonderful team supporting her, both professional and personal, all wanting her to succeed. The staff at Duke is excellent. Ellie and Claude are the same loving supportive parents that they have always been, continuing to be there day after day, night after night. Ellie is a rock. And Brianna is simply amazing, not only as a childhood bestie, but also has a bright knowledgeable doctor.   And of course all of you are constant sources of encouragement as well. She is so grateful for the support. I can't tell you how many times she whispered 'Thank You' to anyone and everyone during our visit. The support is invaluable. When she can't sleep, which is quite often, she will turn on some music and look through the pics on yogi. Hint hint – keep posting to gigistransplant@yogile.com (just send pics to the email address). I will post some pics from the visit as well. 

The last good piece of news is that we heard she might be able to see Juju soon!

G – As you prepare to say au revoir to your old lungs and welcome in the new ones, just remember, "Life is not measured by the number of breaths you take, but by the moments that take your breath away."

I'm so excited for you!! Keep up the good work!!

XOXO Deena

Gigi, a treadmill, and Pandora

As many of you know from Deena, Gigi is out of the ICU and rocking out
in her new floor room. She is doing great. She already walked 45
minutes on the treadmill today while listening to the Pandora station
"the Drums" (which btw is awesome if you havent listened to it), and
sporting her very cool Puma gym shoes. She still has 4 chest tubes
which are on suction. The goal is to slowly lower the suction, then
have them attached to nothing, and then removed all together. They've
already started the process and shes doing awesome! She is only
allowed honey-thick pureed food, which for most people in the hospital
means pudding. For Gigi, this means Dad-made truffle oil mashed
potatoes with pureed ham or carrots. She is looking tough and
beautiful as ever.
Send love. xo.