Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


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 12/29/2015 11:52 AM

By Lorelei Hill

Snow or not, the spirit of Christmas blesses the world once again at this time of year. As the big day approaches, more and more happy shoppers wish friends and strangers a very merry Christmas. Likewise, excited children think about what to write to Santa, and whether or not Santa will think they have truly been nice.

Even the darkest of moods can be lifted by happy Christmas songs and friendly smiling faces. That is, unless the focus on being happy backfires. Feelings of loneliness, sadness, and despair can be just as strong at Christmastime as those of camaraderie, joy, and hope. In particular, less desirable feelings can quietly creep into the hearts and minds of those struggling with tragedy, poor health, and/or emotional stability.

By ACHA on 10/8/2015 10:56 AM

By Lorelei Hill

It’s a quiet Saturday morning. Thirteen-year-old Riley is watching television while I finish breakfast clean-up when I hear the broadcaster say, “If you see blood in your urine, call your doctor immediately.”

“Blood in your pee!” he sneers. “As if…”

“I wouldn’t say that out loud,” I tell him. “Your uncles’ father died after ignoring blood in his pee.”

By ACHA on 6/23/2015 2:25 PM

By Lorelei Hill

This is a phrase I often use with my children. My 13-year-old son Riley tells me that he loves to play the drums, but the truth is, the thing he has committed to is playing Clash of Clans on the computer! My 12-year-old daughter Kate, on the other hand, tells me that she loves to draw. After an artist friend convinced her to let her light shine, Kate committed herself to being the best cartoon pet artist she can be. Evidence of this adorns my home and can be found throughout my office. Her commitment is so strong that she often neglects her schoolwork and house chores!

Despite all that, I give her credit. It takes a lot of dedication to truly commit to doing what you love. Our society seems to be moving so fast these days that most people, myself included, have many things we’d love to do, with little time to actually do them.

By ACHA on 4/14/2015 1:47 PM

By Lorelei Hill

A favorite message of mine—“This place where you are right now, God circled on a map for you,” by Hafiz—is just one of many inspiring quotes you will read when you enter Wise Owl, a beautiful Spiritual Resource Centre that opened on Monday to a warm reception of community supporters, artists, writers, natural practitioners, and other healers.

With blessings and support from family, friends, and brand new friends who offered support as soon as they heard what we were building, my mother and fellow ACHA Blogger Yvonne Hall and I created Wise Owl. This has been our dream for as long as we can remember.

By ACHA on 1/22/2015 12:38 PM

By Lorelei Hill

Last Saturday, as I sipped my morning coffee I looked at my family and smiled. In that moment everything felt “normal.” My favorite mug reads, “Pretending to be a normal person day-after-day is exhausting.” I read the caption and laughed. I purchased this mug as a gift, then found I could not give it away. This message spoke to me.

As a girl growing up with CHD, I tried my best to keep up with my friends. When my condition got in the way, I had no other choice but to step back from my normal life and let others care for me again. As I grew, I was fortunate enough to feel good most of the time. The better I felt, the less inclined I was to exchange my everyday life for one as a patient. I just wanted to fit into the world without having to be concerned about my next hospital test or clinic visit.

By ACHA on 10/31/2014 1:44 PM

By Lorelei Hill

Venturing out into the chilly October weather has been more difficult this year than in the past. The hustle and bustle of the world outside seems simply unnecessary, and I find myself feeling really content to stay inside, remain quiet, spend time with my family, and just be happy with life. Yes, I still have “bad” days, yet they seem to fall into a stride of sorts, becoming part and parcel of my life journey.

On the topic of bad days, I would like to introduce to you a children’s book by Judith Viorst. Many of you may have heard of it, particularly since the recent release of a motion picture by the same name—Alexander and the Terrible, Horrible, No Good, Very Bad Day. Throughout my children’s childhood, I often found myself reaching for this book.

By ACHA on 8/5/2014 9:40 AM

By Lorelei Hill

Last month, my husband Mike and I made our customary drive into the heart of Toronto to attend a 15-minute doctor’s appointment. I am sure that every CHD patient can relate to the long process of visiting their cardiologist. More often than not, it’s a hurry-up-and-wait game that involves blood tests, X-rays or ECGs and finally, what we came for—the face-to-face meeting with the cardiologist.

I hate to admit this, but over the years, these hospital visits have become such a habit that now, on those rare appointments where there are no tests, I almost feel let down. I mean really, what’s the point of travelling all that way just to see the doctor?

By ACHA on 5/23/2014 10:44 AM

By Lorelei Hill

Wow, it’s hard to believe that five months have passed since my last post. In March I submitted an entry about my life after transplant, but at the last minute the piece was pulled due to an emergency hospitalization. What had begun as a series of migraines rapidly grew into an abscess deep within the left hemisphere of my brain. The swelling inhibited my ability to communicate or even comprehend, rendering me comatose. This was brand new territory for my family as well as my doctors.

I’m not sure when exactly I woke up. When I did, I was in a new hospital, with three new medical teams! Too weak to read or write, I sat for the first few days and became a witness to my world. Time and space had no meaning. It didn’t take long for me to comprehend how much I had lost.

By ACHA on 12/12/2013 3:02 PM

By Lorelei Hill

Come they told me, pa-rum-pa-pum-pum
This is one time of the year that I truly treasure. Yes, it is busy and stressful, and many days are filled with pure craziness, but when I find myself sitting quietly by the sparkling lights of the Christmas tree or listening to the soft sounds of holiday music, a feeling of tranquility overcomes me.

A newborn king to see, pa-rum-pa-pum-pum
The craziness continues with gifts to be wrapped, cookies to baked, and kids arguing. For a moment I neither see nor hear any of that and my family marvels at how intensely I can listen to the lyrics within the music. While the melody attracts them, for me music is all about the story hidden within the notes.

By ACHA on 10/11/2013 12:25 PM

By Lorelei Hill

“Did I ever tell you about the night Grandpa King died?”

Nearly three years before my transplant, our family began the difficult, yet inevitable conversation of my potential death. Kate was six years old, Riley just seven. Having watched me grow tired and often collapse, and after many emergency room visits, the children knew that I was getting weaker. Being congenital heart patients themselves, they understood the constant inclusion of hospitals and doctors in our lives. But how much they grasped about the gravity of my condition remained an unknown.

By ACHA on 8/28/2013 12:12 PM

By Lorelei Hill

The other night my cat Tigger arrived at our back door with a gift for Mike and me. This typical occurrence throughout the summer months usually consists of a dead mouse or (on a really good night) the head of a young sparrow. Last night his offering came as a bit of a surprise. This time, he left us the entire sparrow.

Scooting Tigger inside the house, I noticed the poor bird’s left wing stuck out strangely from the side of his body. He held his eyes tightly shut. His little heart pounded with fear.

By ACHA on 7/9/2013 1:21 PM

By Lorelei Hill

“Remember last year?” my mother asked, grinning cheerfully, as we entered the great lobby of Roy Thomson Hall. My apparent look of deliberation led her to continue. “Remember… last year, you know, when we attended this very same conference?”

“Oh! Yeah,” I laughed, wondering for the first time what her experience had been at this same conference last year. It had been only three months since my heart transplant and it was essential that I secured a seat near the exit and as far from the masses as possible. Arriving a day ahead of the crowds, under an umbrella of uncertainty, my post-transplant shakes were relatively under control and the overwhelming pain I had fought in March and April had nearly ceased in May. Still, transference of infection was a huge concern for my transplant team at the time, and, as I was beginning to realize, for my mother.

By ACHA on 4/30/2013 8:37 AM

By Lorelei Hill

“I am such a terrible mother!” she cried.

We had been chatting in a quiet circle at various places of the Hospital for Sick Children’s 4th Annual Labatt Family Heart Centre Family Conference throughout the day. How many times I have said those same words about myself? Being a congenital mother of two high needs CHD children, most days are very demanding.

By ACHA on 3/11/2013 10:25 AM

By Lorelei Hill

It’s been a year since my transplant surgery. What a difference a year makes!

Last year,

My husband, Mike, woke from a restless sleep. His brain was still fogging from the turmoil of packing bags, piling into the car, and driving for hours through blinding snow. In a private ICU waiting room, his aching muscles protested the nerve-pinching contours offered up by the uncomfortable hospital sofa. It had been a long night, with a longer year yet to come.

By ACHA on 12/31/2012 9:23 AM

By Lorelei Hill

On the cusp of a brand new year, I look back and give thanks. 2012 began with a broken promise to my husband Mike and myself. On January 1, 2012, after literally sneaking home from the hospital, I was reluctantly searching for a downtown apartment. I was leaving Mike and our children. They had little choice but to watch me go. I wondered how we'd all endure such a split.

Looking into each other's eyes at our wedding, Mike and I vowed to never live away from each other again. After a year of him in Auckland, New Zealand, and me in Ontario, Canada, we were determined to stay as close as possible. Even working together seemed like a better idea than going our separate ways each day. Mike sold his cleaning company, I left my teaching position, and together we opened Michael Hill Computers in Auckland, and then two years later moved to Ontario.

By ACHA on 11/12/2012 2:40 PM

By Lorelei Hill

This morning’s message on my calendar was a quote from author/mentor Robert Holden. It read:

True happiness is what happens when you come face-to-face with fear and choose love.

I understand this message all too well. During these past five years, I have come face-to-face with my greatest fear. When I discovered my cardiologist was considering me for transplant surgery I denied anything was really wrong with me. In truth, I had gone in to see him because I no longer felt like my happy-go-lucky self. I was frustrated, and often angry.

By ACHA on 10/17/2012 12:49 PM

By Lorelei Hill

It's biopsy day, again. Is this the eleventh or twelfth? I've lost count.

This morning I arrive first in line. This is a milestone for me. Each biopsy day I think I have timed it just right. Not too early, not too late. But alas, another patient is always there ahead of me.

To be honest, I'm not sure why being first in line is so important. Am I really all that busy that I need to get my biopsy done first? Or is it more the nerves that make me think this way? Could it be my ego is pushing me on, driving me to be first? Sadly, I feel it's a combination of the latter two. Aw well, here I sit at the crack of dawn, all by myself in the transplant waiting area—first in line.

By ACHA on 8/14/2012 12:03 PM

By Lorelei Hill

While on the transplant list, I read a book written by a woman who discovered she needed a heart transplant. Her young, but failing body filled her with fear. Her once happy, loving demeanor changed dramatically. Falling into abandonment, she could not allow herself to feel anything but bitter.

It baffled me when even 10 years post-transplant her anger continued. Even though the author was not congenital, her angry words echoed in my brain. While I have struggled with the anger the writer had for herself, her medical team, and the abilities her friends and family had that she no longer did, I have to confess that yesterday evening, I somewhat got it.

By ACHA on 7/27/2012 11:58 AM

By Lorelei Hill

I can't believe how time has flown this summer! It would seem as though life were back to normal.

The kids have been at camp, completed art lessons, and gone fishing. My longtime friend, Fran, has been here for a week. What's left to do?

The answer is so clear.

By ACHA on 6/20/2012 12:35 PM

By Lorelei Hill

“Hi Mommy!” My nine-year-old daughter Kate’s soft, sweet voice cautiously filled the room. Her smiling face peeked around the entrance to my Toronto apartment.

My husband, Mike, and son, Riley, fell in behind. For a second I felt tension in the air. I had literally been living in Toronto since the last week of November, first in the hospital and later at the apartment. So much had transpired in short six months! I was a different person back then and out of necessity my tight little family had become tighter without me. They’d developed new routines and habits, none of which I play a part in. How could they not be nervous about Mom coming home?

By ACHA on 5/18/2012 10:37 AM

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.

By ACHA on 4/16/2012 11:54 AM

By Lorelei Hill

On March 10, 2012, my hospital status changed from congenital cardiac patient to cardiac transplant patient.

It was 5:45 on the evening of March 9, the Friday evening of March Break. As customary since the move, things were quiet in our little apartment. Mike and the kids were scheduled to arrive on Tuesday or Wednesday, and so I was writing when the telephone rang.

By ACHA on 2/20/2012 11:28 AM

By Lorelei Hill

Hello my fellow CHDers. You haven’t heard from me lately as I had a bit of a setback in December. Hee, hee. The doctors thought it was the end, but I’m simply not ready to go. Not just yet.

As per the doctors’ “suggestion,” about five weeks ago my mother and I moved to a furnished apartment in the heart of Toronto, just five short minutes from my team at TGH (Toronto General Hospital). The move came together so quickly, so seamlessly that it felt like it was simply meant to be. The hope is that I will get the call for my new heart before springtime.

By ACHA on 1/4/2012 3:13 PM

By Lorelei Hill

Last month, I went for my first ever day-patient iron transfusion. Yippee, another new hospital experience! Like the old cardiac pro that I am, I arrived on the second floor with minutes to spare. With ID in hand, I approached the reception desk...

”Out this door and down the hall," I was instructed. Apparently this ‘old pro’ was in the wrong place.

By ACHA on 11/7/2011 12:02 PM

By Lorelei Hill

I guess I’ve always been a full cup sort of person. After reading the entries of my fellow bloggers, I am happy to see that most of them are as well! Like a hungry person having just eaten a fine meal, I laughed at Stephanie’s reasons for dating a CHD survivor, and related only too well to Kim’s powerhouse mamas. At 48, I too have experienced my share of doctor’s notes, Paul. Finally, Paul Cardall’s ACHA Conference review was my satisfying dessert, with remarks about maintaining a congenital cardiologist both insightful and necessary.

By ACHA on 10/19/2011 8:54 AM

By Lorelei Hill

I have concrete evidence it exists.

In the spring of 2003, my husband Mike and I spent a weekend mulling over the pros and cons of perusing the adoption of a little boy we saw profiled in the “Book of Waiting Children.” As property of the Ontario Association of Children’s Aid Societies (OACAS), this book contains literally hundreds of photographs and stories of children hoping for a parent to come along and love them.

Struck by the size of the large grey binder, my heart ached when the receptionist handed it to me. On my first flip through, I saw a picture of a small boy and gasped, “He's beautiful!”

By ACHA on 9/23/2011 1:17 PM

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.