The Gift of Life

Today has been set aside specifically to remember and pay tribute to those who have given us the freedom to live such beautiful lives.  We also take this time to remember all the loved ones we have lost over the years: flooding our thoughts with memories of their laughter, smiles, and the impact they have left on our lives.

Who are you thinking about today?  What did you love most about them? What do you miss?  What if a part of that person still lived on: gave new life?  Yes, I am talking about being an organ donor. 

In end stages of lung disease caused by CF the number one option for survival is a double lung transplant. Sure, the general population thinks that a lung transplant will easily cure everything: solve the problem of CF, but it doesn't.  A common question I am asked is, "why don't you just a lung transplant?" The surgery itself is highly risky, and then there is recovery, coupled with the fears of chronic rejection.    But what do you
do when that may be your only hope? What if it was your only option at another  2, 5, or 1O more years with the people you love? It was your only chance at any future? Your only possibility to breathe in more breath?

The Truth in Numbers

5O% of people die waiting on the transplant list due to shortage of available donors.  About 15O people with CF received a lung transplant last year.  8O% of People with CF who get the call for a match and survive the transplant, are still alive after the first year.  5O% are alive after 5 years, and only 1/3 of them are alive at 1O years. A lung transplant does not cure CF.  People with CF require 2 lungs, otherwise one would infect the other. The new lungs will not have CF, but the rest of the body's organs are still ravaged by the disease: kidneys, liver, pancreas, etc.  Also, there is a great risk of developing lung infections because of the immune system being suppressed.  Post transplant 6O + pills a day must be taken for anti-rejection purposes.  The body sees a new set of lungs as a foreign intrusion and tries to rid itself of the unfamiliar and what it thinks are a danger.   These drugs suppress the immune system to hopefully allow the body to take to the new lungs.  Antibiotic-resistant bacteria that infected the old lungs may still be present the sinuses and upper respiratory tract, causing the new lungs to take on the life threatening bacteria again.  Infection and chronic rejection are serious, common, and deadly factors of having a lung transplant.  

When the time comes and CF has progressed to end stage, a person with CF is confronted with whether or not to begin the journey of getting on the transplant list.  The CF team will go through extensive evaluations to make sure someone's body and mind are strong enough to endure the physical and mental demands of a lung transplant. The body has to be strong enough to be able to endure the high risk surgery, and then be strong enough to withstand the shock of recovery: physical and mental. 

My Choice

Years ago I would have told you firmly that I would never even consider a lung transplant being an option: I never thought I would actually need one, or that when when the time presented itself I must have reached "my time."  Denial is a beautiful thing until you're confronted with the hard truth that sometimes is your life.  At this moment my current lungs are stable and "healthy" enough to not have to discuss the option of a transplant.  But that day will come, and I will be confronted with the desperation of wanting so badly to be given more time. What would I do with the promise and hope of 5 more years? 1O years? More?  When that time comes I don't know what will happen or what we [me, Mark, my CF team] will decide, but for now at times the question itself plagues my mind.  With every set back, drop in lung function, PICC line, the future of making that decision becomes more real.  For now, I need to do everything I can to keep these lungs as "healthy" as they possibly can be, for as long as possible.

Hope

There are lots of people that are living long great lives because of a lung transplant: no longer having to breathe bravely for every moment to live.  They are no longer bound to watch the world pass them by, or feel as if time is slipping through their hands.  The honest truth about organ donation is someone else's life must be lost in order for someone else to gain.  We have all experienced loss in our lives, but what if that life we lost could still live on?  What if in that tragic loss there was some good that could be done? What if our grief gave someone else hope?  What if it gave a child its mother? A husband his wife?  A family its daughter? A best friend?  

Today we are celebrating the lives of those we have lost and for those who have given us our freedom.  We all have the power to give freedom.  Freedom from oxygen tanks, hospital beds, life support, and infections.  Please join me and become an organ donor: check the box. We have the power to give life.  

What would you do for extra time with the people you love? To live?

Please take the time to watch this moving documentary chronicling Eva's journey to transplant.  It sheds a whole new light into the physical, mental, and emotional journey of CF.  It can be found on Netflix.  

65_RedRoses

Fight2Breathe

Today's blog is dedicated to an incredible individual by the name of Caleigh Haber.  I stumbled across her story last November to which I am so grateful.  Her exuberant spirit in every breath, her positivity, and fearlessness have become a part of my every day life.  She has shown me what beauty and strength look like through the eyes of CF.  She has helped me realize that I do not need to pretend anymore.  That CF includes all of me, and it makes me just as beautiful in my own way. 

Caleigh is a beautiful 23 year old from San Francisco, CA who also has Cystic Fibrosis. She is currently awaiting the call for a double lung transplant.  Just a glimpse at her blog, Facebook, or Instagram gives the world a glimpse into her passionate will to breathe bravely. 

 Please enjoy her beautiful journey:
"When I think of my journey leading up to this point of needing a double lung transplant to survive, it is similar to the process of making a warm chocolate soufflé; I've made this dozens of times in the several kitchens I have been blessed to work in. I, as well as the soufflé, start as an egg. We both enter into life with goals. Mine: to be a good person, make myself proud, be a great athlete, become a pastry chef and defy the odds of Cystic Fibrosis. The soufflé: to rise.

As our journeys proceed, we beat hard, whisking away like egg whites, working hard to develop into its purpose. I joined gymnastics and cheerleading at a young age and competed at a professional level, until moving to San Francisco to pursue my biggest dream of becoming a chef at the Le Cordon Bleu. Along the way there were set backs putting me in the hospital, but that only drove me to work harder at accomplishing a degree. I interned before and after the program, absorbing every bit of knowledge I could. Like a mise en place (for all you non-chefs mise en place is the meaning for “putting in place”. It is refers to the preparation before production begins), I gathered my skills instead of my ingredients, working sometimes 13 plus hours a day on top of my medical regimen. But, I wouldn't wish for one second of the experience to be gone. Waking up when it was still dark out to do my breathing treatments and staying up way past the point of exhaustion to be sure I was getting enough calories for the day, was worth every second in the kitchen.

After my externship, I began working as a pastry cook. The adrenaline and excitement of the fast paced kitchen brought me such passion that I would go home unable to sleep, waiting to get back into the kitchen. The feeling of accomplishment that the culinary environment would bring me while working is unimaginable to a non-foodie. Creativity, texture, temperature, taste; all the things my chefs in school would look for. Those are the things as time went by that forced me to strive increasingly harder to be the best I could.

With so much happening in my life personally and professionally, I had reached my peak. I had all the love, support and energy around me, similar to the chocolate and sugar whipping vivaciously around the yolks. Then all at once the whisk was snatched from the copper mixing bowl, and just like that I lost control of the souffles journey, my own journey as well. The feelings now are peaked whites, sugar, yolks, and chocolate in a bowl slowly being folded to combine into the next step. The ramekins are ready with sugared edges, uniform to my own career, waiting for my talent to grow. In the meantime, I'm in a bowl trapped. This disease is present but I am not powerless, it is gripping but I am brave. Though it is surely the most frightening and unsure roller coaster of my life- I am making the conscience choice to take the very front seat because I can endure and fight. My struggle makes me who I am. I take this invisible disease; naked to the uninformed eye for what it is and let it be. Now it's time with your support to enjoy life with all that it comes. To embrace the experiences and capture the moments, whatever they may be and fight through it. I've known pain, struggle, and defeat that others will never have to experience, nor should anyone. Cystic Fibrosis has made me the friend, sister, daughter, who I am today- I have accomplished many goals, but I am not finished yet, not even close." [words by Caleigh Haber]

A Love for Life
In just the 6 quick months I have been following Caleigh and her story, she has battled blood clots, blood infection, G.I. issues, CFRD [CF related Diabetes], and many unyielding effects associated with end stage lung disease. Yet, she has a love for life that is intoxicating. Many days, her posts seem as if it were my own voice being reflected on the page in front of me: dreams of the future, a thirst for life, and making every breath memorable with people so dear.  Thank you so much Caleigh.  Love to you all.

Please follow her journey to transplant with end stage CF and consider donating to her fight. 
Website & Donate: http://fight2breathe.org/
Facebook: https://www.facebook.com/fight2breathe
Instagram: http://instagram.com/fight2breathe


What is your soufflé of life?