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My Journey: Waiting for a Heart Transplant

Sep 23

Posted by: ACHA
9/23/2011 1:17 PM  RssIcon

By Lorelei Hill

Each morning, a choir of birds positions itself outside my bedroom window. Once in place, the concert begins.

“Ode to the morning! It’s a bright new day,” they seem to be singing.

Autumn has always been one of my favorite seasons, this year even more so. Three years ago, after a series of dizzy spells and ongoing arrhythmia, my cardiologist suggested I “make some lifestyle changes.” Up until then I never really considered how having tricuspid atresia might one day restrict my life. I scoffed and told myself I’d be okay. I’ve always been okay.

When a few months later, he approached the topic of transplant, I took notice. Well, sort of. I quit volunteering and made afternoon naps a welcome part of my weekend routine. But as the October days turned cold and the November snow began to fall, the dizzy spells became more frequent.

Three weeks before Christmas, my husband was cooking dinner while I read with our six-year-old. Beginning in my legs, a peculiar sensation moved upward through my body, creating a pounding sound in my ears. Falling limp, I slid to the floor. All but my hearing had ceased to function.

“Mommy! Mommy!” My baby screamed, but the room had disappeared. Minutes, perhaps hours passed before the wail of sirens pulled me from a dreamless sleep.

Twelve hours later, with no idea as to why I collapsed, doctors in our small town ER ordered bed rest and sent me home. When you grow up a cardiac kid, you come to appreciate the handful of people who get your condition. Well-meaning health care professionals do their best, but we know when it’s time to seek the care of our specialized cardiac team.

My plan was to call my cardiologist first thing Monday morning. My husband and children tended to me, so for the weekend, I was free!

When the Monday morning gale of activity began, so did my daily routine. Rushing my children along, I felt that strange warmth well inside me again. “Call Daddy,” I cried before falling to the floor.

“Can you hear me, Lorie?” the chief of our ER asked as he squeezed my hand.

My husband’s face flashed before my eyes. In the distance I heard my brother and sister-in-law whispering. A flash of family members, and out of the blue, my sister! Five years estranged, hers was the last face I expected to see.

Three days later, I awoke in the critical cardiac care unit at Toronto General Hospital. An embolism had nearly taken my life. Now on the heart transplant list, I take a handful of pills each day, and another each night. I have been advised to stay at home during the winter to avoid the cold, and in the summer the heat. I travel three hours to the city each month to see my transplant/cardiac care team. I can no longer go to the beach with my family, or attend my children’s ice times.

On the upside, I’ve traded my job to pursue my dream of writing. Now, I’m at home when kids the need me. Two years later, I still get to hug my babies and tease my husband. My sister is back in my life. My youngest brother just got married.

Autumn will turn to winter, and then to spring. Spring will turn to summer. At some point during it all, mid-day or perhaps midnight, I will be rushed to the hospital. Taking from me what has always been broken, my doctors will replace it with a previously loved heart. I will recover to once again hear my children laugh, and those beautiful birds join in concert outside my window.

Come join me for the ride. Some days are filled with laughter, and some a little sorrow. Tricuspid atresia has indeed affected my life, but not always in a bad way…

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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9 comment(s) so far...


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Re: My Journey: Waiting for a Heart Transplant

I was born with TGA. After years of issues much like you describe I recieved my new heart back in Jan. I had to wait almost 3 years the last 4 months in the hospital. Keep hanging in there, when you finally get your new heart you'll feeling better than you ever have.

By Sean on   9/23/2011 2:47 PM
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Re: My Journey: Waiting for a Heart Transplant

I'm glad you will receive a "new" heart. I was turned down, without being given valid reasons. I don't know about Canada, but in the U.S. only 28% of females receive heart transplants, while 72% of men do.
I think this is inequitable, and that it direly needs to be changed.
Connie

By Connie on   9/23/2011 6:08 PM
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Re: My Journey: Waiting for a Heart Transplant

Dear Connie,
So sorry to hear you were turned down for transplant. If you do not feel that you were given good reasons, you might consider visiting another Adult Congenital Heart Program to get a second opinion. You can find that information on the ACHA website at www.achaheart.org/home/clinic-directory.aspx. Unfortunately , in certain cases congenital heart patients are not eligible for transplant due to damage to their other organ systems. If you are not a transplant candidate, your ACHD team should be able to work with you to maximize your health and improve your quality of life with your existing heart. I am happy to talk with you more about this. Just give me a call at ACHA.
Paula Miller
ACHA Membership Services Manager

By Paula on   9/27/2011 4:59 PM
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Re: My Journey: Waiting for a Heart Transplant

Hi Connie,
My cardio team initially told my family that my organs were to 'far gone' for me to gain a place on the transplant list. This was while I was still unconscious from the embolism. For three days, my family was told to prepare themselves for the worst. They did not think I would revive. When I did, they took a second look, due in part my ability to pull through.

I loved Paula's comment about maximizing your health and improving your quality of life. I write another blog which is linked to my website if you are interested in healthy heart/ healthy mind avenues.

Keep strong, my friend. The angels are with you always. :)

By Lorie Hill on   9/29/2011 11:32 AM
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Re: My Journey: Waiting for a Heart Transplant

Hi Sean,

Thank you so much for your words of encouragement. As I read your comment, I could feel your strength, and the vibrant energy you send out into the world. Can you see the angels laughing??

By Lorie Hill on   9/29/2011 11:34 AM
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Re: My Journey: Waiting for a Heart Transplant

I was born with Chd, 6 yes ago I had a heart and double lung transplant! I have never felt so good. It was a long journey, but I wouldn't traded it for anything. The angles are watching, they will take care of you Lori..

By Sue bennardo on   10/11/2011 7:57 PM
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Re: My Journey: Waiting for a Heart Transplant

Hey Sean,

You are truly welcome. And to answer your question, the angels laugh everyday in my house. Mostly at me!

By Lorie Hill on   10/19/2011 7:36 PM
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Re: My Journey: Waiting for a Heart Transplant

Thanks for your words of encouragement Sue. I would love you and all of my readers to check out blog.tenthchild.com/wordpress/?p=985, as I have some research for my book, From the Heart, that I would love for you all to get involved with, if you so choose. You can also have a look at tidbits taken from the book on my From the Heart Writing Page.
Thanks everyone for your support!
The angels are indeed smiling!

By Lorie Hill on   10/19/2011 7:41 PM
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Re: My Journey: Waiting for a Heart Transplant

Hello laurie its been a long time its waynes daughter sherri I just heard about u having the heart transplant it is wonderful news . I wouldx love if u would add me on your facebook so we can keep in touch , I actually live in richmondhill so I guess we are close to one another now and I didn't even know it . Well I am sending my love and best wishes to u .

By sherri whiteman on   4/3/2012 3:24 PM

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