Heart Transplant

Brace for Impact

IMG_3341

The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. Insert P-A-N-I-C.

These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.

But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…

We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.

This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.

Advertisements

Lets Talk

Organ donation is often a hard conversation to have. An open discussion is difficult since the topic is about death but remind yourself it is also about life. When the unthinkable happens we do not have time to think about donating organs since we are dealing with grief and a variety of emotions. We all need to open the discussion and I hope I can show you why.

Did you know that organ donation can save 8 lives and further saves up to 80 lives now with tissues, valves and other vital organs in the human body. I have seen and continue to see people and children whose lives have been saved by this wonderful gift. I currently personally know ten children in our province who have had transplants and are doing amazing things with their lives. My daughter had also been a recipient of donor tissues and she continues to thrive. We are very thankful that she is no longer in immediate need of a donor heart but we however know that this will be necessary in the future.

Each year thousands of Ontarians get a second chance to live life to its fullest, thanks to the kindness of people who have given the ultimate gift but sadly everyday on average 18 people die waiting for that second chance. Some people still believe that you can be too old to donate but this is not the case. There is no age-related reason not to donate. We as compassionate human beings can plan to give a gift of life and we can start by opening a discussion with our family and friends. This is also very important since in Ontario even if you have registered at beadonor.ca your family can decide not to donate your organs. Canada continues to have one of the lowest donation rates so let’s change this! Let’s talk so we all know and then we can respect each others wishes. I am now going to include one of my favourite stories written by the late Robert Noel Test.   Read this to your loved ones to open up this discussion – it is so very important – Let’s Talk and remember loss can equal hope.

To Remember Me  
Robert Noel Test (1926-1994)

To Remember Me

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my “deathbed.” Call it my “bed of life,” and let my body be taken from it to help others lead fuller lives.

Give my sight to a man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who has been pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

Jean 

Jean is a regular blogger for Cardiac Kids, for more information about her or to read her daughter’s story click here 

 

354 Days

IMG-20140826-WA000820140913_180423IMG-20140819-WA0008

 

When I first joined as a part of this blog, I didn’t realize how difficult it would be to conjure up posts. Obviously, my last one was spur of the moment – I emailed it to Meghan and asked her to replace my original post, which was meant to be as an introduction of Elentiya’s journey with CHD. I never dreamed that I would have had to write a post about another Warrior earning his wings.

A month after Strati passed away, Elentiya was admitted to 4D for the fourth time in her short life; it was the hardest admission we had have to deal with. A month after we stood by our friends as their little boy fought heart failure, we were suddenly in a similar situation. Elentiya was diagnosed with Acute Heart Failure, and the fear was real. We had seen Strati fight so hard with his own heart failing, and the fight to have him listed for a transplant, and here we were, no longer being followed by the Single V team, but being switched to the Heart Function team.

Acute Heart Failure. I had a family member say to me, shortly after we announced the diagnosis, “it’s not as bad as it sounds, is it?” and I honestly didn’t know how to reply. What part of those three words doesn’t sound bad? And what, of the things that come with it, isn’t as bad as “Heart Failure” sounds? Things were supposed to get easier after Elentiya’s Glenn; at least, that’s what we were told. That was how things normally went. But, as my parents put it, Elentiya is like her mother: she doesn’t do anything the easy way, and when something happens it can never be a small occurrence – it has to be the whole shebang.

I have had days, especially recently, where I want to throw in the towel. My life is so far from normal; so far from what I thought it would be at almost 23 years old. Don’t get me wrong, I love being a mother, and I seem to have found my passion through the CHD community, but this road isn’t an easy one by any means. In fact, some days just seem so hard that I wonder what I did, or who I upset, to be dealt this hand. What did I do to have my only child be born with such a vital part of her body fight against her? Why did I bring Elentiya into this world, when all she seems to do is suffer? Those are the days I feel sorry for myself; the days when I see other people doing normal people things – going out, getting an education , working… Things that I don’t get the luxury of doing anymore.

On August 15, 2014, Elentiya was listed with the Trillium Gift of Life Network for a heart transplant.

My biggest fear, from day one, was that my beautiful little girl was going to need a new heart. We all know how having a CHD is so limiting and terrifying, but the concept of giving her a new heart… That goes above and beyond the simplicity, if you will, of HLHS.

On August 15, 2014, all of my biggest fears in relation to my daughter and CHD became real. I should have been relieved that she was successfully listed for transplant – a new heart would mean no Fontan. It would mean being able to take trips to places like Disneyworld. It would mean being able to be “normal”: I could put Elentiya in daycare and follow my dream of becoming a Cardiac Nurse (that shouldn’t surprise anyone, by the way; I am, in a sense, a pseudo-nurse as is.) What is the normal way that someone should react when their biggest fears are right there in their face? I cried. I was angry. I was sad. Most of all, I was terrified. We had been given a 1 in 4 chance that Elentiya won’t make the 9month-1 year+ wait for a new heart. And that’s with her being on the milrinone to keep her heart as healthy as can be. How could I – how could anyone – not be scared with those odds? “A 75% chance of surviving is a better way to look at it,” is what I’ve been told, and I absolutely agree. But people need to understand – Elentiya is 1 in 100. Elentiya having HLHS was a 1% chance. One percent. Tell me how one can focus on the bigger, more positive number, when the smallest and worst number is the number their child was given?

But enough feeling sorry for myself. It is what it is, which seems to have become my motto. Elentiya needs a new heart – a new life, even – and all we can do is wait for it.

In the meantime, she is being “optimized” by her entire team. Her OT is working with her every day, and she is meeting milestones above and beyond what we expect of her. She’s been put on 1.1 kCal for her feeds, and because she is doing amazingly with “real” foods now, she is being cycled over 18 hours, which means she has 6 hours in a day where she doesn’t need to be “plugged in” to her g-tube.

On those days where I find myself struggling to smile, or more often, struggling not to cry, I look at my daughter and realize how amazing she is. She has fought every single day of her life, and she will continue fighting, even after she receives a new heart. She is my biggest inspiration. She is my Hero.

****************

I wrote that blog just over a month and a half ago, and a lot has changed since.

Three hundred and sixty-five days ago, Jon and I welcomed a little Blessing in the form of a 6lb 1oz baby girl, with big blue eyes and a head of blonde hair. In many ways, Elentiya was perfect.

Eleven days ago, on September 19, Jon and I said good-bye to that same little Blessing.

From the very beginning we had said that this battle was Elentiya’s to fight, and we would fight alongside her until she couldn’t anymore. We said we would know when she couldn’t do it anymore. We knew.

I don’t think it’s important for me to go into detail about what happened during her last few days. Those last few days didn’t define our daughter. The way she was, full of character and amazement… Elentiya defined herself.

She went peacefully, just so everyone’s mind is at ease. We all did everything that we could, her little heart just couldn’t handle it anymore. I held her, and she held her daddy’s hand, right up until she took her last breaths.

I think it’s a normal reaction to question things as time goes on. If she had been listed when we wanted her to be, would it have been different? If we hadn’t pushed her to be on cpap, would it have been different? Why couldn’t she have waited for her first birthday?

The truth is, nothing could have changed the outcome. And I can truly say I wouldn’t have wanted anything to change.

Elentiya touched a lot of hearts. She is mourned and missed by so many people. It’s true that we said good-bye to her, but in the grand scheme of things, she never went anywhere.

From a personal standpoint, my daughter is everywhere. She is the breeze that surrounds me on a cool day. She is the sunshine that warms my entire being – inside and out. She is the smile and laugh of all the other children I see. She is truly an unbroken spirit – the force that drives me to be more than I am, and do more than just what I plan to.

I miss her terribly. I watch her videos, look at her pictures, smell her clothing… I do cry at least once a day. The tears are both joyful and heartbroken. I’m happy that I was given the chance to be her mother, and to learn and grow with her. But I’m also sad to know that I will never hold her again, or see her start school.

You don’t have to apologize to us when you see us. Truth is, there’s nothing you can say, and I’d much prefer it if you just gave me a hug and asked me “what’s next?”

Jon and I will be going on a vacation in the upcoming weeks. Somewhere warm, where we can relax and come home again with a clear mind. We’ll take some of our daughter’s ashes and sprinkle them in the sea. She always loved swimming, and now that way she can swim for as long as she wants.

I’m carrying on with my plans to become a Cardiac nurse. Starting in January I’ll be taking the Pre Health Science program at George Brown, to prepare myself for 3 years of nursing school. I promised Elentiya that I wouldn’t give up on my dreams, and that I would help children just like her, and parents just like us.

In the end, Elentiya gave me purpose. She taught me not to sweat the small stuff. She showed me what it’s like to feel a happiness so strong that it swells up inside of me. She left me with a promise that I will never be the same person I was three hundred and fifty-two days ago. Similar to the tattoo of her name that is on my wrist, Elentiya has left me with an eternal mark, an undying love for someone who loved so unconditionally.

You are my Sunshine,

My only Sunshine.

You make me happy

When skies are grey.

You’ll never know dear

How much I love you.

Please don’t take my Sunshine away.

20140730_11272020140815_10293420140815_13562020140726_201719

Elentiya Noctua Elena Sokoloff-Lefevre
September 30, 2013 – September 19, 2014

Caitlin

Caitlin is a regular blogger for Cardiac Kids, to learn more about her click here.

Please check back next week for a special post from a guest blogger.

Living in the Shadows

Instead of being a heart mom, I am  a heart sister.  Also, instead of growing up with a sibling battling congenital heart disease, for the first 5 years of his life, my brother lived an ideal and healthy childhood.  Not even the doctors could predict what his future entailed.

On October 22nd, 1993 my parents were blessed with a beautiful and healthy baby boy.  By September 1995, my parents had built up what they believed was an ideal family, with two perfectly healthy children, a son and a daughter.  They had it all. Their dream home, family, and jobs.  What could possibly go wrong?

Throughout my childhood, my brother Matt was not just my big brother.  He was also my best friend, and my role model.  I wanted to do absolutely everything he did, regardless of my age or my capabilities.  By the age of 5, my brother had begun to play soccer, and baseball, and was the happiest bundle of joy anyone had ever met.  This was all true until the summer of 1999, when he was barely able to keep up to me, his three year old sister, when we went for bike rides.  The doctors were convinced that it was just asthma, and could be easily monitored.

Like any mother would, my mom failed to stop at this simple diagnosis.  She knew in her heart that there was something more to her son’s illness than simply asthma.  How could a perfectly healthy child suddenly become so sick that his lungs, liver, and the rest of his organs stopped functioning properly?

With further investigation, the doctors diagnosed him with restrictive cardiomyopathy. Essentially, he was experiencing a severe form of heart failure, which ultimately restricted his ventricles from filling his heart with the proper amount of blood, which resulted in his heart losing its ability to circulate fresh blood to the rest of his organs.  To this day, the cause of this disease is still unknown, and the odds of being diagnosed are (with no exaggeration) one in a million.  There is no physical treatment that can cure this disease; therefore, receiving a heart transplant was, and is, the only viable option, which presented any possible hope at receiving a second chance at life.  At this point, the doctors weren’t able to tell us if he would survive another day, year, or decade, and we were told he could drop dead any minute of a heart attack with no warning at all.  The doctors weren’t even able to tell us if a match would ever be found, or if his disease could be cured.  Even if he received a transplant, there was no guarantee that he would ever return to a ‘normal’ life.   This left us with one option.  To wait and see if a donor heart would become available in time to save Matt’s life.

At this point in time, I was only 4, and completely unaware of the severity of my brother’s illness, or the risk that I could lose my big brother at any moment.  For me, it was always an adventure to go to Sick Kids with him, because every time we went, we would both receive a beanie baby (him as a reward for enduring all the tests, and me because I wanted to be just like him).  The one thing I didn’t understand was why all the little boys and girls were so sick when there were all the fun toys and games for them to play with.

If all the other children had to be pushed around in wheelchairs and hooked up to IV’s, was I going to be next? If my brother got special treatment why couldn’t I? I didn’t think there was anything wrong with him.

At least that’s what I thought, until December 19th 1999.  To this day, there isn’t a single moment I’ve forgotten from that very night.

It was around 9 o’clock in the evening when the phone rang.  No sooner did my mother come running up to my room and began packing an overnight bag for myself.  She called a number of different family friends in search of a place for me to stay the night.  I soon found my whole family in the car, and me being driven to my piano teachers house with no explanation.  At first, this seemed exciting.  It would be my first real sleepover.  Those thoughts didn’t last too long, as I spent a majority of the night in tears wondering why my family had left me, and where they were going without me.  I was still too young to know every detail about my brother’s sickness and why it required my parents to leave without taking me with them.

To my complete and utter surprise, my grandparents showed up at the doorstep the following morning.  No later did I find them driving me to their house in Ottawa, still without my parents or my brother.

Christmas soon came, and of course this is every child’s favourite holiday! Family, turkey, and of course Santa; what could go wrong?  As much as I enjoyed adding yet another Power Ranger figurine to my collection, it just wasn’t the same opening presents without my brother.  I still didn’t know where he or my father were.

Losing a family member is absolutely devastating, and I can’t imagine how my life would be without my brother.  Lucky for me, I didn’t have to, as a match was found and my brother was transplanted early in the morning on December 20th 1999.

Being the sibling of a transplant recipient (or anyone battling a life threatening illness for that matter) is one of the most challenging tasks imaginable. As I grew older, I became more and more aware of the severity of his illness.  He was put on immunosuppressant drugs to reduce the risk of his body rejecting his new heart.  But with these drugs, came illness.  He spent grade one being home schooled to reduce the risk of catching colds going around the school. To ensure I didn’t pass any disease onto him as well, I was also required to stay home from school (not that this was something I was complaining about).

Most younger siblings live their lives being the centre of the show.  My parents did their best at balancing the attention, but I’m sure you can imagine the difficulty of this when you have a sick child.  This was especially difficult during the first few years when he was required to go into Sick Kids quite regularly.  My parents did everything in their power to ensure his body didn’t go into rejection, which resulted in our family making sacrifices that slowly became second nature.  This resulted in us both being forced to grow up faster than most children, just to adhere to what became our new lifestyle.  This was especially prominent when my brother always received extra help from my parents when he missed school for regular check-ups, clinic appointments and the regular trips to Sick Kids, which soon began to occupy his childhood.  As a result, this forced me to mature faster, and learn more things on my own just to keep up with what had become a new set of standards.

Despite what seemed to be a never-ending list of appointments, he would always put up a front making it seem like he didn’t mind any of the testing he was forced to endure, and that it had instead became part of his life.  Regardless of his age, he would always come back strong and optimistic, acting as if nothing were wrong.

Although, receiving a transplant seems to be the worst thing to happen in the world, it also provided us with many opportunities most families would never have a chance to encounter or be exposed to.  My brother was able to compete in both the national, and international transplant games, which allowed us to travel to Edmonton, London (Ontario), Windsor, and Australia.  We have also been exposed to a whole new community of transplantees and their families that stand as a support system letting us know that we have never been alone in this battle.  Experiencing this has provided my whole family with a new outlook on life, proving that life isn’t measured by how many days you live, but instead how you spend them.

Like any transplant family, mine has forgone a ‘regular’ lifestyle just to keep my brother alive.  To this day, almost 15 years post transplant, my brother is healthier than any doctor could have ever imagined, and surpassed any expectations set out for him.  He’s entering his fourth year studying microbiology at the University of Guelph, and has battled more in the past fifteen years, than most people face in their entire lifetime.  To this day, he is still my role model, and my respect grows for him with every new task he accomplishes.  He inspires me to persevere through even my toughest times, and it’s because of him that I have grown to be the person I am today.

Growing up in his shadow has taught me so much, and I thank him for each and every lesson I’ve learned.  He is the most selfless person I know, and with all the illness and travesty he’s faced, he knows not to fret over the small things in life, because in reality they have a miniscule effect on the greater outcome. He is a prime example that just because life may present you with roadblocks, they are in no means a reason to give up.

Ultimately, transplants are similar to running a marathon. 3 equal parts of preparation, mental toughness, and heart. Once you breakdown the mental barriers that you will in fact reach the 26.2-mile finish line; the rest of the battle is enduring the pain, and persevering right until the end. If you have enough passion and strength to fight through to the finish, the first two steps make the race that much easier.

Kathryn

Kathryn is a guest blogger for Cardiac Kids, her brother Matt has been speaking at Cardiac Kids events since he was a young teenager. Kathryn has become more involved with the charity as she has grown, volunteering at events to show support. Kathryn will be working with Cardiac Kids in 2014/2015 as a sibling mentor.  

Check back next week for a post from Laurie