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Nine Weeks Post-Transplant: Life with My New Heart

May 18

Posted by: ACHA
5/18/2012 10:37 AM  RssIcon

By Lorelei Hill

Before I begin, I would like to take the time to thank those who commented on my last entry. Your interest in my progress is heartwarming. It was my ninth week in the city when the call for my new heart came, and so, it only seems appropriate that I am writing this entry during my ninth week post-transplant.

On the evening of March 9th the call came. Just hours later, I was in the operating room. Life as I had previously known it was over. Little did I realize, the life my family had previously known, at least for the time being, had also come to an end.

Over the Easter holiday, my ten-year-old son’s eyes clouded over as he confessed that he didn’t think I was going to survive. While Mike and the children continue to live in our family home three hours north of Toronto, they can’t help but wonder when Mommy is coming home.

The same can be said for my pets. They look here and there when they hear my voice over Skype, but seem confused not to be able to find me in the house. Mike, who continues to be my rock, is exhausted. He finds it difficult to understand my pain or the mood swings that accompany it. Only able to visit twice a month, how could he be expected to understand?

My father, who lives a few hours east, has learned to jump on Greyhound buses. At least once a week he travels to the city, where he takes me to dinner if I’m up to it, and then he falls asleep on a blow-up bed for a night or two.

“Little price to pay to have my daughter back,” he tells me.

After nearly six months, my mother continues to remain at my side. It is she who sees my daily ups and downs, and she who witnesses the effects of many, many steroids. While necessary to combat rejection, they are the major contributor to the body aches, the heat that singes my innards while chilling my skin. It is my mother who regularly attends my clinic visits and biopsies, as well as the unscheduled ones that that take me into the emergency department for the night. She is always there to hold my hand.

Living with transplantation, heart or otherwise, is tricky. On the one hand, it is the most amazing blessing. Every morning when I hear the birds sing in the day, I smile and give thanks to be alive. And then I roll over, and everything hurts again.

“This is temporary,” I whisper into my pillow before hugging my heart cushion to my chest so I bring myself to a sitting position.

Transplantation is truly a miracle, and I intend to use my experiences to raise awareness and help CHD children and their families prepare themselves for the journey. Once my transplant team gives me the green light, I, along with a fellow transplant patient who received his heart 12 short hours before I received mine, intend to visit children’s hospitals, community centers, and schools.

Using Teddy Bears with “zippers,” we’ll share the story of a little bear’s gift. Telling of a young bear who, with the love and support from family overcomes peer pressure and declining health to get his new heart, it begins:

Little Bear is just like all the other bears in the forest … just a little smaller … just a little slower. Little Bear’s heart is just a little weaker.

“Little Bear can’t climb a tree!” The other bears tease.

“I can play with my friends, I can laugh and have fun! Who cares if I can’t climb a silly old tree!”

Just as my family and I have changed, so too does Little Bear. This is a message transplant recipients need to hear. For all CHD patients fearing this may be their path, you need to know, despite the changes, despite the pills, and despite the pain, there is a light at the end of very long tunnel.

Hello from Ontario, Canada! Lorelei Hill is a mother of two CHD babies, wife, writer/teacher, and a survivor of tricuspid atresia. After graduating with honors from Queen’s University in Kingston, Lorelei went on to teach and travel the world. Now settled into small town life, she is working with other CHD patients and her own cardiac specialists to complete a self-help book for young CHD families, entitled From the HeartClick here to visit her website.

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1 comment(s) so far...


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Re: Nine Weeks Post-Transplant: Life with My New Heart

Congratulations and bless you! My brother also had transplant last Dec. 31 and he's doing great. Every biopsy shows no rejection.
What a beautiful idea to write a children's book with a "zippered" little bear! Kids would love it, and they and their parents would learn so much.
God bless you and continue to strengthenyou.
Connie

By Connie on   5/21/2012 8:23 AM

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