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I Am No Longer the Only Person I Know with CHD
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Learning to Live Life at a Safe Pace
I Am the Only Person I Know with CHD
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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

By ACHA on 6/25/2014 9:34 AM

By Yvonne Hall

In the fall, before my daughter’s latest crisis, I posted the first in a series of tidbits I wanted to share with parents of cardiac patients on what I have learned through decades of trial and error. Some of these memories are positive but others will address where possibly better choices could have been made. This message relates to how easy it is to forget our other children‘s needs during such times.

By ACHA on 4/16/2014 12:52 PM

By Yvonne Hall

Since my daughter’s transplant two years ago, each day has been one of relief and gratitude. Lorie’s recovery has been truly miraculous, even surprising her medical teams. Admittedly, I was becoming complacent. Then without warning, the proverbial “other shoe fell.”

How could she possibly be undergoing brain surgery and what were we doing back in the ICU waiting room? This past month has been a blur of doctors, hospitals, waiting rooms and travel. Lorie has contracted a bacterial infection in her brain diagnosed by a rapidly-growing abscess. Infection is the enemy of transplant patients, but a brain infection was almost beyond the comprehension of her family, as well as her transplant team.

By ACHA on 1/2/2014 3:25 PM

By Yvonne Hall

Five years ago, it seemed impossible that my daughter would be healthy, happy and partaking in family Christmas festivities. December had become the month to dread and with good reason.

As each Christmas season approached, Lorie unexpectedly suffered health setbacks and for two seasons her condition was nearly fatal. The approach of December then became filled with apprehension and fear that Christmas would again be marred by health concerns.

By ACHA on 11/18/2013 10:28 AM

By Yvonne Hall

I recently had the privilege of being invited to participate in a transition orientation day conference at Toronto General Hospital. The purpose of this day, aptly named “Crossing the Street,” was to help educate parents of teenagers presently at SickKids Hospital who will soon be transitioning to the adult hospital across the street. It was also designed to alleviate the fears of these teens and covered all topics of concern in making this adult shift in their lives.

Doctors, coordinators, counselors and experienced parents were available to offer information and assist everyone present with their questions and concerns. It was presented in a relaxed, informal environment where everyone could share experiences and answer questions regarding navigating to an adult hospital system.

By ACHA on 9/25/2013 11:27 AM

By Yvonne Hall

A few months ago I was discussing with an author friend how I couldn’t seem to get to my writing. I didn’t know where to go with it. She immediately asked me one simple question that got the creative juices flowing again.

“What ten pieces of advice you would offer a parent of a congenital heart patient?” She then followed with, “That will give you the first ten chapters of your book.”

By ACHA on 8/14/2013 2:08 PM

By Yvonne Hall

Never once during decades of caregiving did I ever consider I might lose myself in the process.

I was just 20 when I became a mom for the second time but this time was different. My baby daughter was diagnosed with a heart condition called tricuspid atresia and my world was about to change. Hindsight shows me that my entire adult life has been overshadowed by her condition and unknowingly somewhere along the way, I lost “me.”

This shocked me because I had a busy life filled with my own drama and her care was simply another element of mothering. Failed relationships, divorce, and working full time as a single mother to two young daughters were just some of the challenges I faced. My life was busy and I juggled my responsibilities like any busy mom or dad would do.

By ACHA on 6/20/2013 2:30 PM

By Yvonne Hall

The past few weeks have been filled with firsts for my daughter, Lorie. Sadly, we too often take many ordinary experiences for granted, but anyone with a compromised lifestyle understands ordinary doesn’t exist.

Lorie, a congenital heart patient, underwent a lifesaving transplant in March 2012. As a child she lived as normal a life as her health would allow, but there were restrictions on her physical activities. Riding a bike was one such restriction. Her one attempt resulted in catapulting over the handlebars, which signaled the end to her biking endeavors.

By ACHA on 4/4/2013 11:19 AM

By Yvonne Hall

Raising a child with CHD can present more than its share of crisis, but I have learned over the years with my daughter Lorie that such times are part of a greater plan. Many setbacks over the years rendered her survival tenuous but were actually stepping stones to unimaginable positive outcomes. I have named these invisible connections my silver thread and learned to be hopeful despite present realities.

My scariest moment in Lorie’s journey occurred four years ago when she suffered an embolism. Most people, even without her fragile condition, don’t recover and for the first time I had to consider the unthinkable possibility she wouldn’t survive.

By ACHA on 2/20/2013 2:22 PM

By Yvonne Hall

How do I recap 50 years in a few words?

Raising a child with CHD alters your life forever and takes you places you never dreamed you would go. Lorelei Hill, fellow blogger and recent heart transplant recipient, is my daughter. Now, being able to share her experiences to benefit others is Lorie’s dream come true and witnessing this phenomenon is mine.