Sunday, September 23, 2012

"She had a transplant, she's fixed, right?"

It's a common misconception that when someone gets a heart transplant they are "fixed."  I can definitely see how people would think that, but it's simply not true.  Yes, a heart transplant can allow a person to have a much better life.  It can make it so that they finally feel better, can climb stairs, run & play, or just liveHeart transplants save lives.  But it's not an easy road, that's for sure.  Here, I'd like to shed some light on what it's like to live in the transplant world.  It's my hope that I can help others understand why there are some areas in my girls' lives that are very very different than their childrens' lives.  And also why it's so important to really adhere to what some may call my "paranoia" about the things we can and cannot do.

First things first: a heart transplant (or any other organ transplant) is trading one disease state for another.  Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system.  In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times.  These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them.  They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer.  In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low.  They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now.  So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause.  Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.

Another common myth: once you are transplanted, that organ will last forever.  False.  Most heart transplants last around 10-ish years.  Now this is just an average.  Plenty of people live 20 years without needing a new heart, and others will need another one two years out.  For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted.  Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will.  And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above.  So I don't.

Germs, germs everywhere.  Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants.   Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies.  Public pools?  *Shudder* Not for my kids-I'd be better off letting them swim in the toilet.  School, of course, is a necessary evil.  But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style.  But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school.  With hand sanitizer.  And a bubble wrap suit.  Just kidding.  (Wouldn't that be cool, though?!?!  Ha ha.)

Constant monitoring and doctor's visits.  When was the last time you had to bring your 6-year-old to have a bone scan?  What's your three-year-old's resting blood pressure?  How's your daughter's fluid status today?  Don't know?  To all of the above, I say: been there, done that.  Every single organ system is monitored in a transplant patient.  Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like.  Sometimes they take biopsies.  Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table.  My 6-year-old could direct you around the Mayo Clinic.  It's just a fact of life for us.

Still think transplant's a permanent fix?

In no way do I mean to gripe and groan about transplantation.  If not for transplants, and organ donors, neither of my children would be alive today.  I am a tireless advocate for organ donation.  I will never rest.  We are absolutely and totally blessed with our two beautiful girls.  They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing.  It's just that it's not an easy road to travel.  Is it worth it?  You bet.  I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman.  They are both doing extraordinarily well.  They live their lives as normally as possible, and that's what matters.  They'll never be the same as their peers.  We have basically fought for every single aspect of everyday living that most take for granted.  That's ok, though, because it has made us open our eyes to the blessings that surround us.  We really have stopped to smell the roses.  We just don't touch them.  Fungus on the rosebushes, ya know.

Friday, September 21, 2012

The upside of being a Heart Mom

Yeah, I know.  You are probably looking at the title of this post and thinking "Is she out of her mind?!?!"  Well, yes, but that's beside the point.  There really is an upside to being a heart mom. Allow me to explain..
While I would love to have never had the need to even stick my toe over the line into the heart world, here I am.  There's no going back from it, so I may as well seek out that ever-elusive silver lining to this cloud, right?
When you become a heart mom, you are thrown into what I like to call a swirling vortex of terror.  It's like getting the proverbial rug pulled out from under you, in the middle of a rainstorm, while being struck by lightning.  More than once.  When you get the chance to breathe again, it's like this sixth sense kicks in that you weren't even aware you had.  The need to search out others like you.  To find out all that you can about what's wrong with your child, and how you can go about "fixing" it.  (And once you've been in the heart world for longer than five minutes, you quickly learn there's no fixing things, just dealing with it.)
If you're lucky, like me, you stumble upon a community of heart moms.  It's like they have radar: "There's a new one of us out there, we must go support her!"  These heart moms swing into full force.  They coordinate meals, bring care packages, send cards, start prayer chains, and swoop in with every bit of advice that they have.  They let you cry and whine, play the "why me" game, and then help you to suck it up and move forward.  They sit with you while your child is in their umpteenth surgery, even if you don't want to talk at all.  They get coffee, hold your hand, and pick you up when you crumple to the floor in fear.  And if they can't get you to get up, well then they just plunk right down with you.  When you have a long hospital stay, they rally the troops to fundraise for your family, offer to watch your other children, walk your dog, feed your cat.  They bring you chapstick, lotion, gas cards and hugs.  They flood your Facebook wall with well-wishes, prayers and love.
Even if you've never met these people in person, they become your family.  They speak your language-one of caths, ejection fraction, Lasix, chest tubes and Heparin. Talking with them is a relief, because they get it.  Without long, drawn-out explanations, they just get it.
The strongest people I have ever known-ever-are the heart moms that have lost their children.  Even in the midst of their grief, which will never go away, they celebrate every triumph with you.  When your child gets out of the hospital, they are the first to send a text, or drop off a meal.  It amazes me. My children are my heroes, but the heart moms I know and love are a close second to that.
No matter the time, the situation, the place, I know that I can count on them.  I hope they know that I am more than happy to return the favor.