Monday, May 26, 2014

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.

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.  


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