Tuesday, August 13, 2013

Transplant lists and non-compliance: Who decides who gets a heart?

The internet is abuzz today with outrage over a teen being kept off the transplant list due to suspicions that he will be non-compliant.  You can read about that here.
As a transplant momma, I have to weigh in on this one.
When you are worked up for a transplant, you go through extensive screening.  We are talking pyschologists, financial counselors, docs, nurses, pharmacists, social workers, and surgeons.  Each patient is assigned their own transplant coordinator to act on their behalf.
Transplant is not "just" a surgery.  It's a complete lifestyle change.  If you do not follow the changes required of you, you WILL reject your organ.  It's that simple.
My two daughers, 4 and 7, would have been denied a transplant, too, had I not been committed to making sure that they take all their medications, are doing their best to avoid germs, follow proper food safety measures, and get to all of their doctor's appointments.
Some will cry out that it's unfair.  That it's medicine's way of "playing God" and picking and choosing who can and cannot have a transplant.  In this case, some are playing the race card, as the teen in question is black.  And of course, some are blaming this on our president.
Here's the bottom line:  there just aren't enough organs to go around.  It's a sad truth that people die every single day waiting for a lifesaving transplant.  The decision to list or not to list people is not taken lightly whatsoever.  If, while on the list, a patient develops a fever, they will go inactive on the list.  This is to ensure that the transplants that are performed are given the best shot at being successful and saving the most lives.  It has nothing to do with economic status, race, gender, or whether your doctor likes you or not.
Think of it this way:  Say there's a new drug that was developed that cured cancer.  The hitch?  That it was not widely available, and there wasn't a way to get more faster.  Say you have inoperable end-stage cancer and this drug would cure you, but they gave that drug to someone who turned around and flushed it down the toilet.  How mad would you be?  Not only did this person in essence take your change at living, but they wasted their own.  It's a little bit like that in this situation. 
If the doctors have reason to believe that this kid will not comply with post-transplant protocol, they really have no choice but to make the decision not to list him.  Doing anything else would be irresponsible.  It would be willfully wasting a good organ, when there are plenty of people out there that would do whatever the doctors asked of them to get that transplant.  People that would treat it as the gift that it is, cherish it, be grateful for it, and take excellent care of it.  We don't know the whole story behind the doctors' and/or UNOS' decision to not list this boy.  I am sure that further details cannot be relased, as it could stir up a storm of litigation.  Keep in mind that not everything is as it seems on the surface.  Also remember that just because he is denied NOW doesn't mean that that will never change.  He CAN commit to showing the transplant team that he's ready, willing, and able to do what needs to be done.  He CAN make it happen. 
As a parent who's been there, twice, I applaud the doctors and UNOS for their stringent and thorough screening.  I don't envy them their position.  It must be awful to deny someone.  After all, doctors are who they are because they want to save lives, and this is the opposite of that goal. 
Until more organs are available, or until they can grow people their own replacements from stem cells (Research is progressing on this, which is so encouraging.), the transplant teams around the nation have no choice but to handle things this way.  They want to be giving as many people as they can a shot at a successful transplant, and non-compliance is not the way to get there.
I cannot imagine being in that family's shoes right now, nor can I imagine how the medical community must feel.  I will continue to pray for all, and hope that things will work out in the end.
In the meantime, I encourage all of you to be sure that you are a registered organ donor.  Organ donation is a complicated thing, but it's a beautiful thing as well.

Wednesday, August 7, 2013

Leaving a legacy

It's been a hard week for me. 
The CHD and transplant communities lost a brave boy named Cameron one week ago today, and yesterday was his funeral.  I was there, of course, to say goodbye to this warrior child, and I was amazed at what I saw.  An absolute sea of red (we were asked to wear Cameron's favorite color to the service, and we all were happy to do so) filled that church.  It was heartbreakingly emotional, yet so inspirational.  Cameron touched many lives and will continue to do so through his brave journey.
As we left the church, I got to thinking about the legacy these transplant kids leave. 
Every single day, they defy the odds.  Every heartbeat is one that without the miracle of organ donation would not happen.  So many want their kids to grow up to be President, to make millions of dollars, to invent something no one can live without.  Transplant parents?  We just want our kids to be.  That's it.
Today is Madi's four-year heart transplant anniversary.  I am amazed and grateful every day, but on these special anniversaries, I get to thinking even more.  What do I want for Madi?  My greatest hopes for her are simple.  I never ever want her to think that she is above lending a helping hand to someone in need.  I want her to strike out in the world and do what she loves, whatever that ends up being.  (I am laying my bets on something to do with cars.)  I hope that she does everything with a sense of gratitude for where she is in life, and never takes it for granted.  I want her to appreciate life down to the smallest of things-the miracle of rainbows, the smell of fresh cut grass, the tiniest of ants crawling up the driveway.  I want her to ask questions, to have a thirst for knowledge, and to seek the answers to those questions.  If she decides that being a janitor is exactly what she wants to do with her life, then so be it.  I just want my kids to know that no matter what they do, to do the best they can and leave the rest to fate.  Cliche?  Maybe.  Yet it's exactly what I want for my daughters.
Kids like Cameron, Tru, and Nathan (just three of the heart warriors I know that have recently gone on to Heaven) leave a legacy that cannot be matched.  I hope that when people speak about my girls, they can say the same.  That they are living a legacy that we all would strive to, while doing honor to the brave, incredible warriors that have left this Earth way too soon.