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.

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.

Losing my religion

Well, life got away from me again and I MAJORLY slacked on the blogging front.  I know, no surprise there.  But hey, I have two kids under 8 with the energy capacity of Red Bull-amped chimpanzees, so who could blame me?

Anyway..

I've said it before, I will say it again: I was raised Catholic.  Did the baptism, communion, confession, stuff.  Sang the hymns, can still repeat the proper responses expected during Sunday mass. My kids are both baptized. You know what I took away from my years in church?  There's a lot of Latin in Catholicism.  And the Bible?  SO not a user-friendly read.
As I have grown older, I have come to realize that my church is wherever I make it.  My "religion" is simply my relationship with God.  I have faith.  I just don't pin myself to an "organization" anymore. That's all religion really is, if you think about it: an organization.  Just like the Parent Teacher Association at school.  You have the devout, devoted, crazy-busy, living-for-the-organization folks, just as you do the uber-perfect, over-scheduled soccer mom in the PTA.  The church, just like the PTA, only seems to like you if you have something to give, and if you fit with their concept of "right."  I am not a PTA mom.  I don't fit anyone's mold.
So many use their religion as a platform on which to stand and spew judgment.  They justify their intolerance of others who they think are "wrong" with the fact that they go to church on Sunday, or read their Bible.  I don't know about you, but my parents raised me to believe that we are all humans deserving of love, understanding, compassion and acceptance.  It shouldn't matter who you love, where you worship, if you read the Bible or not.  If you are a good, hard working, productive, honest citizen you're all right in MY book.  I could care less if the person you are married to is the same sex as you.  Why is that my business?  If you pray, cool.  If you don't, that's also cool.  Cause guess what?  YOUR life is YOUR life.  Unless you are out there committing crimes or being a jerk, it should not matter what you do with your time, or who you do it with.
I know I have blogged about this very topic before.  You may be sick of reading about it.  But the truth of the matter is this: I wouldn't have to blog about it if I wasn't faced with overriding judgment every time I turned around!  It's everywhere!
What happened to holding yourself accountable for your own doings?  Owning your rights and wrongs, your sins and your triumphs?  Everyone says that the world is going to hell in a handbasket. They're right.  But you know what?  The fact that the Pledge of Allegiance has been taken out of some schools has nothing to do with that.  We are so busy looking for someone to blame for all the bad in the world, that we forget to stop and look in the mirror.  We forget to reach out a hand to someone in need, no matter where we are at in our own lives.  We forget to band together as a country and act like the beautiful, brave, free melting pot that we are.  We judge people who are different colors, who love differently than we do, who practice a different faith than we do.  Where's the love in that?
I am conflicted.  Really and truly.  How do I reconcile the church of my childhood with the wonderful people in my life that some religions say are horrible?  How can I look at my kids, remember what they faced, and think about what they have yet to face, and not want, no, NEED something to believe in?  I guess it comes down to just trying to be the absolute best person I can be.  I know that I will fail, and I will fall on my face, and it won't be graceful.  But you know what?  That's OK!  
If you truly believe, you know that you don't need a building full of like-minded people to tell you that you are a good person.  You already know.

The carousel church

It's been a battle.
Raising two children is a task in and of itself, and when you throw dilated cardiomyopathy, brain injuries, and two heart transplants in the mix, it gets downright chaotic.  There have been many times when I felt like I was pushing a three-ton rock up a steep hill and just when I thought I had things under control, the rock would go tumbling down the hill, dragging me with it.  Round and round we'd go, the boulder and I, finally landing in a disheveled heap at the bottom of an abyss.  Looking up, what did I see but yet another hill.  A steeper one.  So it goes.

But every now and then, a moment of clarity comes through.  A burst of understanding, of knowing that the effort is not unnoticed, and not unrewarded.  I had one of those moments this weekend.

We took the kids to the Mall of America to visit the MN Sea Life Aquarium.  The girls have always shown an immense love of all things that live in the sea.  No matter how many times we visit the aquarium, their enjoyment and awe is always as fresh as the very first time we went.  This visit was no exception.  Madi and Sydney oohed and aahed at the giant tank of rays, and gasped when they spotted the neon-green eel wrapping itself around a rock.  They "petted" starfish and sea urchins, and were over-the-moon excited at the tanks of jellyfish.  As I watched these creatures swim past (or overhead, in the case of the part of the aquarium that's in a tunnel), I tried to look through my daughters' eyes.  Such a simple thing as a turtle seemingly near enough to touch brought them such great happiness.  

Then it was off to Nickelodeon Universe, the Mall of America's indoor amusement park.  The lights, the sounds, the shrieks of delight from people on the various rides, was so exciting to my children.  Madi got to ride on the ferris wheel, and literally skipped her way into the line with her daddy.  My sister, Sydney and I waited on the ground below, and waved furiously every time we saw that little blond head go past.  After that, Madi and Sydney both got to take a ride on the carousel.  It was Sydney's very first time on a ride of any kind.  She had always been either too little or too sick to be able to enjoy a ride, something that was always heartbreaking to me.  I wondered if she would be a bit scared, but that worry quickly passed.  She sat up on that horse, laughing and waving like nobody's business.  Her smile was as wide as I have ever seen it, truly what you could describe as a "megawatt" grin.  It took my breath away, and brought tears to my eyes.  For that moment in time, Sydney was "just" a kid, having a great time with her parents, sister and auntie.  She didn't have to stop for therapy or medication, or have a doctor's permission.  Her only requirement was to "remain seated for the duration of the ride."  Just like everyone else.

Without an organ donor, she wouldn't have had that moment.  As the carousel kept spinning, full of bright lights and calliope music, I said a whispered thank you to the donor family for this moment, and for all the moments that Sydney gets to have.  (And Madi too!)  I prayed that somewhere out there, the thought that their loved one lives on in a bright, happy, beautiful sunshine girl brings them a bit of peace.  I prayed that they could feel my overwhelming gratitude and love for them.  And then I went to meet my family as they got off the carousel, my girls grinning like fools.

Praying at the carousel... who'd have thunk?  Just goes to show you, "church" is anywhere and everywhere.  Faith is in your heart, especially if you are blessed enough to have a transplanted one.

How CHDs affected me

Someone asked me not too long ago how I think being in the CHD world has affected me the most.  I am still quite baffled by the question.  It's part of the reason why I haven't blogged at all this week, CHD Awareness Week.  I have been somewhat lost in thought about this topic, as there are many ways my life has changed.  I don't feel like I can pick just one, but here are the ones that make the top of the list.
Appreciation
It's an oft-repeated mantra of people who have faced down demons.  "I learned to appreciate the little things."  But it's so, so true.  It doesn't matter that I don't live in a gigantic house with a fleet of shiny new luxury cars to ride around in.  Nor is it a big deal that we are a one-income household.  Of course, we'd all like to have a little extra money every month.  To be able to afford to go on vacation would be fabulous.  In the scheme of things, though, it's no big deal.  We make do.  We dine like kings without leaving our house, and marvel at all the little things we do every minute of every day.  Things that normally wouldn't warrant a second thought. You know how new parents will go watch their newborn sleep, totally in awe of their child?  I still do that and Madi is darn near seven years old.  It was my husband's birthday yesterday and I asked Madi if she wanted to sign his card.  She did, and scrawled a near-perfect "M" inside the card.  I couldn't have been more thrilled if she'd written the latest New York Times bestseller.  I have been brought to tears at the sight of my child finishing a plate of spaghetti.  Seriously.  And then I promptly laughed at myself, which brings me to the next item...
Humor
Sometimes, life deals you a crappy hand.  Sometimes, it happens more than once.  When you have some of the world's greatest doctors totally stunned at the fact that both of your children have now needed heart transplants, what is there left to do?  You laugh.  When your child hasn't pooped for two weeks due to all the narcotics that they've been on, you laugh at the poor nurse that has to give her an enema.  You laugh even harder at the lucky one who gets to bathe her after the apocolyptic "code brown" that ensues.  When your daughter learns to get out of restraints designed to keep her from messing with her IV or feeding tube, you just sit back and giggle.  With nurses around to take care of their every need, you get a glimpse into your child's personality that you may not have noticed before.  Instead of worrying about changing diapers or cleaning up vomit for the third time in a day, you get to do the playing, singing and laughing with your little one.  As time goes on and your kiddo looks better every day, it feels so wonderful to crack a smile.  To truly enjoy all the personality traits you never knew your child had.  And to share your smiles with someone you love, which is the next topic.
Community
More often than not, at least in my case, when the going got really tough with my children, people I thought I would be able to count on for anything turned tail and ran.  For whatever reason, they just couldn't handle this new way that I had to live my life.  I am ok with it now, most of the time, but as it happens it cuts like a knife.  So what's a modern mom to do?  Why, turn to Facebook of course!  There is an online community of heart parents that are out there just waiting to lend their support and knowledge to a newbie.  When I was at my lowest, they were the ones I turned to because they knew where I was at mentally and emotionally.  I didn't have to go into lengthy descriptions of what this term or that medication meant-they already knew.  They prayed, wrote sweet letters and cards, and sent care packages like no one's business.  They came for visits armed with chocolate and hugs.  They stood by my child and held her hand as the heart monitors and ventilators beeped, ignoring the whirr of the ECMO machine like it wasn't even there.  They cried with me when things got scary but never ever allowed me to lose hope.  They let me know that they were my family and always would be.  There is nothing so valuable as someone who totally understands where you're coming from.  I guess, besides the fact that I am most thankful for my two miracles, this is the part of the CHD world that's affected me the very most.  It's the club I never wanted to be a part of, this heart parent thing, but in them I have found home.
Aside from the absolutely incredible gift that my children were given by their organ donors, knowing where I belong, and that I will always be loved unconditionally, is the very best gift of all.

Why I'm angry at heart month

Be warned: I'm mad.
It's February, which means that it's heart awareness month.  February 7th-14th is CHD Awareness Week.  We get busy in my household in February, hoping that we can spread awareness, pay forward the kindnesses given to our family, and maybe educate some people on what it's like to have a congenital heart defect sneak up on you and slap you in the face.
I post pictures of my children when they were in the hospital.  Post-surgical pics full of tubes and wires.  Photos of my children with ventilator tubes in their throats.  Feeding tubes down their nose.  Catheters.  You know why I do that?  So that people stop and take notice, and perhaps take a moment to educate themselves on the number one birth defect.  Also so that my girls can see that they are strong, and they have beaten the odds, and overcome some serious stuff.
On Facebook (and in "real life"), I have lost friends because they said they couldn't handle the pictures.  Or my posting of CHD facts.  Or when I repost fundraisers for people who have lost their children, so that they can get help paying for their child's funeral and/or headstone.  They tell me it's "sick", "wrong", "annoying", "too sad", "disturbing."  Do you think I LIKE the fact that my children have gone through this?  That I ENJOY thinking about my daughters being on life support, going through strokes and CPR?  Or that I take some kind of sick pleasure begging people to throw a few dollars at a fundraiser for a little boy who died in the same room that both of my kids "lived" in post transplant?  Believe me, it's no freakin cake walk.  I hate that my daughters have had to face this.  That any kid does.  Or any parent, for that matter.  The truth of the matter, though, is that without constant posting, people brush it aside.  Even with the CHD postings that my heart family and I flood Facebook with, I strongly suspect that most people have forgotten about it in the amount of time it takes them to scroll their mouse past a posting.
Would you ignore my posts if my children had cancer?
If they lost their hair?
If I was trying to raise money for pediatric cancer research, or for a child who lost their battle to cancer?
No.  You wouldn't.
You'd donate to fundraisers.  You'd come to our blood drives.  You'd look at pictures that showed a child's battle with cancer and remark about how strong they were, what a warrior they were.  You'd do whatever it took to help a local family pay for their child's headstone, without a single question about why it was so expensive or why they can't pay for it themselves.  You'd help deliver blankets, books, and toys to kids in the cancer ward at the hospital.  You wouldn't tell me to stop being so vocal about my child's illness, and you certainly wouldn't criticize my parenting for never, ever wanting to stop until there was a cure.
Why?
Is my child not as important?
Do heart kids not deserve a chance, too?
Isn't it worthwhile to allocate funds toward research to combat the number one killer of our children?
I give to pediatric cancer research.  I participate in fundraisers for kids with cancer.  I never think twice about it.  Because it's a child that's in pain, a family that's floundering in their difficulties.  I take no issue with the attention that cancer patients receive.  I just want the same for my own children.
I want to be able to post things about congenital heart defects and organ donation without people rolling their eyes, saying "There she goes again."  I want people to want to know more about CHDs and how they can help eradicate this monster.  I want my friends and family to support me and mine by supporting the efforts I try to make toward CHD awareness.  For them to never forget that CHDs do not discriminate.  That they take more lives than all childhood cancers combined.  That they are severely underfunded research-wise, and the healthcare costs for them reach into the billions every year.  Yes, billions.  With a b.  I want people to stop what they are doing when they see a picture of a heart baby, full of tubes, and think about the tremendous courage of the child and their family.  To reach out to them.  To pray for them.  To truly care about this fight that so many of us are in.
This is our world.  We live it every day.  Heart parents, like any other parents of a child with a serious medical condition, just want to be heard.  Really heard, and not just for one week out of the year.

Don't be judgin' me

It's getting harder and harder to keep my mouth shut.  Not that I generally have a problem expressing my opinions but I suspect what I am about to say will cause some uproars with people.  It's cool.  I am ready for it.  At least I think I am.  So here goes:
I am pro-choice, and pro-birth control.  Yep.  True story.
However, I am NOT a "baby killer" or a "murderer", and I am rather tired of being labeled as such.
Now let me make this clear.  I do not think that abortions should be a form of birth control.  I do, however, believe that if a woman is raped and gets pregnant, she should have the option of an abortion.  That's my prerogative to believe it, and no amount of comments from others will change that.  Rape is a crime, and there's no reason that someone should be forced to carry a baby that is the result of that.
Birth control?  I take mine every day.  I am involved with a lot of support groups online that center around having special needs kids, kids with heart issues, and of course ones that are for transplant families.  I can't tell you how many times I have been asked "Are you having another child?"  I would have loved to have had another baby.  However, with my two children both needing heart transplants, there's obviously some pretty dominant nasty stuff in my husband's and my combined gene pool.  Time and time again, I hear "Well you shouldn't take birth control, you should let God decide.  Because God will take care of your children no matter what."  That statement makes me so mad I could scream.  I believe that having another child would be irresponsible.  I also believe that God is okay with birth control-why would He want anyone to purposefully bring a child into this world that could spend their life suffering?  And yes, God does provide.  He doesn't pay my bills though.  He doesn't make it so that my kids wouldn't have to go through what they did.  I learned many valuable lessons along the way, true.  I continue to learn due to what has happened.  That doesn't mean that it's easy.  It is not what anyone would want for their children, that's for sure.  And while we are on this topic, I may as well mention the phrase "God doesn't give you anything you can't handle."  AHHHHH!  I think this may be the saying that I hate above all else.  Really?  So my friend who lost her son.. she should "just handle" it, because God says so?  Nope, nope, nope.  PLEASE, people, think about what you are saying when this phrase comes to your mind.  It's so stupid, really.  If it were true, then some of the people in the world are "able" to "handle" loss, therefore they go through it?  No, I think the more appropriate expression may be "God helps us handle what we are given."
So back to the whole abortion/birth control topic: stop calling people baby killers.  It's disgusting.  I am not a baby killer, nor would I ever want to kill a baby.. or anyone.  I just believe that it's not the government's place to tell me what to do with my body.  That's a right I alone hold, and no one will be telling me any differently.
You're pro-life?  Cool.  I respect that completely. Don't believe in birth control?  Fine by me.  Not my body, not my business.  Just don't use your opinions as a platform to judge or belittle others.   Remember, there is only one judge.  And it's not you.  Or me.