Recent Entries
An Open Letter to My Pediatric Cardiac Team
My Virtual Health
On Giving Up Control
CHD and the Snow
Adventures, Old Friend
I Never Knew Life Could Be Like This
We Must Use Our Voices
Your Voice When You Don’t Have One
Settling in for a Fight
My Evolving CHD Identity


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 4/14/2014 1:46 PM

By Stephie Goldfish

Have you ever carried the burden that we are the forgotten Xs who will be Xd off and signed away? Some questions going through my mind lately are: What would you do if you found yourself in a precarious situation where you became either homeless or needing assistance with day-to-day living? Have you thought of your long-term care needs? Will you go to an independent living setting or decide to be in a nursing facility?

A person I recently met made me begin to think of the concept: "What's the patient's name?"

By ACHA on 12/20/2013 11:13 AM

By Stephie Goldfish

One afternoon, not long ago, I awoke from a deep sleep, feeling a heaviness and sadness weighing on my heart. In my sleep, I had been trying to figure out why I felt so much pain and sadness. It bothered me so much that it woke me up, and I came to an epiphany in the moment or two I sat up and figured it out.

Lately in my life, I have been encountering people who either, really, really love me, or who really, really can’t stand me. And they keep coming into my life.

By ACHA on 10/24/2013 9:25 AM

By Stephie Goldfish

I have only been in love once. And, I know the person I fell in love with loved me as much and as deep.

Our love felt a lot like the love depicted between the two characters in the 1970 movie, “Love Story.”

The heart is so treacherous, it can make one believe that a devoted love and endearment like this for one another is obsolete, almost unattainable, and hard to keep alive. The mind can begin to question why this love should survive, anyway. The mind can begin reasoning irrational and delusional things that make one go crazy and feel hopelessly sad.

By ACHA on 9/19/2013 9:19 AM

By Stephie Goldfish

I wish this blog could be a continuation of my last blog, a follow-up story of where I was at just a month ago, where I wrote about getting to a new team of doctors and making progress in some of my personal goals. I wish I could say I was a little more stable than I was a month ago, that I finished the pastel portraiture I promised my poetess friend and her twin daughters.

It’s not like I’m telling these big fat lies, intentionally misleading everyone about what I’m doing, what I intend on doing. It’s not that I don’t know what I’m talking about. Honestly, I don’t want to come off as some protagonist BS artist confusing the truth, nor bringing about some perversion of the truth.

By ACHA on 8/9/2013 11:57 AM

By Stephie Goldfish

"Don't try to chase normal. Just try for progress." ~A poolside friend and former cancer patient

During our lifetime, we will meet many guides and teachers who will influence our decisions, for good and for bad.

Most of those who have had a hand in our life's direction won't always stay in our lives as we'd wish them to or as they'd wish us to. We move on in our journeys or they move on in their journeys.

By ACHA on 6/3/2013 8:29 AM

By Stephie Goldfish

For part 1 of Stephie’s post, click here.

My journey to the lost horizon and beyond has shed some light into my bruised and broken heart.

Coincidentally, two weeks before I decided to leave my home in North Carolina, I met my neighbor with whom I bonded right away. A retired respiratory therapist/nurse, she was concerned about me, because my sister had just moved, and my neighbor knows how important it is to be near a specialized hospital able to handle my CHD.

By ACHA on 5/10/2013 9:11 AM

By Stephie Goldfish

Stories are told by my mom and older siblings that happened in the distant past—stories my twin sister and I were too young to remember, but are not lost. They are etched in memory, and are still fresh and vivid as yesterday.

One story is imprinted on my mind, like my infamous abnormal EKG, which will never read normal, unless I receive a combined heart and lung transplant.

By ACHA on 1/11/2013 12:08 PM

by Stephie Goldfish

Quiet now. Be still. Listen.

Take in a deep breath. Slowly exhale. Take in a few more, deep, long inhalations, and on each exhalation, let your breath go out as far as you possibly can. Repeat.

Well, we made it past the “end of the world,” and we are well on our way into a full-fledged New Year, perhaps a new era, as some are calling this time.

By ACHA on 12/7/2012 1:08 PM

By Stephie Goldfish

Compliance or non-compliance: that is the big C word. And compliance is a topic that needs to be addressed here, in all seriousness.

I never thought of myself as someone who doesn’t follow doctors’ orders. But at my last appointment I got the wakeup call of my life.

Over the past few months, thinking that I’d try to go natural and holistic, I tried going off some of my medicines. One of the reasons I did this is that one of the main medicines I take causes really bad heart burn or acid reflux. I had begun to feel too toxic with all of the medicine I was taking, and had thought my liver or kidneys were failing, not to mention my heart.

By ACHA on 11/2/2012 2:27 PM

By Stephie Goldfish

“What are you afraid of, Stephanie?”

These words keep playing over and over in my head lately. I was asked this question by my psychologist when I first sought out psychotherapy in 1991. At the time, I answered:

“Death. I’m afraid of death.”

By ACHA on 9/6/2012 12:51 PM

By Stephie Goldfish

Mom knew we were coming. We had phoned her on our way and she even said she would prepare some Haitian chicken.

After the long eight-hour drive, around 11:30 p.m., we arrived at our mother’s senior high-rise apartment building. My twin sister and I each carried up our cat in its carriage and a few of our personal items. It’s a cumbersome routine, and although there is an elevator, I had to stop outside of the elevator to catch my breath before we knocked on our mom’s door. I do this so that I don’t stand there panting and out of breath when Mom opens the door, and my sister waited with me to make sure I was OK.

By ACHA on 6/4/2012 2:04 PM

by Stephie Goldfish

Lately, I’ve been thinking about society and about our standards we set in place for our future generations.

We have the haves and have-nots, we have the rich and poor, we have those we consider from very fortunate circumstances and those we consider from less fortunate circumstances. Our society claims that we are a civilized nation where anyone from any of these backgrounds can reach his or her dreams or potential no matter what their lot in life.

By ACHA on 5/9/2012 11:44 AM

by Stephie Goldfish

In January, I posted a blog about my friend Nicole, a young adult I recently met with a CHD diagnosis and story very similar to my own. When I spoke with Nicole for the blog post, I was also able to ask a few questions to her mother, Jane, about how Nicole will be transitioning into adult care.

To coincide with Mother’s Day on Sunday, presented below is an abridged version of the interview.

By ACHA on 3/19/2012 1:12 PM

by Stephie Goldfish

Last week, as my sister and I were taking a drive, I mentioned to her that I may not write this blog, that I may not write anymore blogs, and that I want to take a break from CHD—and everything and everyone, actually.

If there’s anything I’ve ever been consistent about, it is in being inconsistent.

By ACHA on 2/16/2012 3:02 PM

By Stephie Goldfish

Recently, researchers at Rice University and Texas Children’s Hospital have turned stem cells from amniotic fluid into cells that form blood vessels. Their success offers hope that such stem cells may be used to grow tissue patches to repair infant hearts. Read more here.

By ACHA on 1/10/2012 2:14 PM

By Stephie Goldfish

“Welcome to adulthood,” Dr. Heydarian’s nurse, who is also his wife, said, as I undressed for my first echocardiogram at age 17 in January 1983. Sometimes those gowns are useless when having this procedure, and I’m very glad a woman was with me during the echo. This is one of many CHD experiences I had going into adult health care, and we’re fortunate enough to have a team, such as ACHA, that understands this transition from adolescence to adulthood.

By ACHA on 12/12/2011 2:34 PM

By Stephie Goldfish

There is a game we played when we were kids back when we lived in the projects in my hometown. We all lined up in the same spot, ran around one of the apartment buildings, then raced back to the same exact spot where we had started, shouting out, “Last one in is a rotten egg!” I hated playing this game because, usually, I was the last one in.

However, sometimes my twin sister would go slowly, intentionally, so I wouldn’t be the last one in.

By ACHA on 11/16/2011 1:19 PM

By Stephie Goldfish

Making my way through the drive-thru of my favorite fast food restaurant just yesterday, everything I know and what’s being said about eating healthy and living right didn’t seem to matter. What with new mocha frappes this, and super combos that, one can easily forget.

Seriously, my age, my current weight and my bulging belly (and no, I’m not pregnant), not to mention my congenital heart disease, should all be enough to concern me about my eating and exercise habits.

By ACHA on 10/25/2011 9:59 AM

By Stephie Goldfish

Goodbyes are never easy.

A few months ago, one of my doctors informed me that she would be moving away so that she would be closer to her children and for her own spiritual journey in life. This news came as sort of a shock, only because I had thought I would be the one who would move away first. In fact, I had moved home for a few months to help my mother, but I had plans to move back.

My doctor is so stable that I took for granted that she would never move away. She helped me get stable and taught me how to be calm and breathe in oxygen. She once likened my life to a plate full of marbles—it’s been so unsteady. And, she once told me that my sister and I must have guardian angels as tall as the Empire State Building. She was also one of the main reasons for my moving back.

By ACHA on 9/26/2011 1:45 PM

By Stephie Goldfish

Every month I order my congenital heart disease medicine. Every month I order my oxygen tanks. Every month, since taking this new CHD medicine, I have to get a pregnancy test. And, every month, since about the age of 13, Mother Nature orders my monthly cycle.

This month, however, when I called in to order my CHD medicine, I got past the normal questioning of setting up a delivery, etc., but then came the question asked every time I call in, "Stephanie, when was your last pregnancy test?"

By ACHA on 9/14/2011 10:56 AM

By Stephie Goldfish

When I think about how I lived through the horrifying and tragic events of 9/11, traipsed nearly eighty blocks after a major Northeast blackout, and survived a mass transit strike during one of the coldest winters, it doesn't surprise me that my twin sister and doctors call me Superwoman.

To me, though, when I think of Superwoman, it conjures up scenes of a super human with powers enough to have been able to avert a tragedy like 9/11 so that no lives would have been lost, or someone who has the power to prevent any undue hardships caused by a major blackout or transit strike. And, Superwoman's heart would be perfect, not needing to be repaired.

By ACHA on 8/30/2011 12:37 PM

by Stephie Goldfish

“Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.” ~Steve Jobs

Three years from turning thirty, I came to an awakening about my life—where I had been, where I was at that moment in time, and where I was headed. It all hit me like a head-on collision. I’ve never been the same since. I wondered, at that time, why now, and not then?

By ACHA on 8/16/2011 12:06 PM

By Stephie Goldfish

These days when I listen to my heart I hear things that are sometimes too hard to bring to the surface. Like the pain of being divorced twice and the reality of possibly never being in a successful relationship in the future. Like the pain of trying to have a child despite that I put myself in extreme danger by getting pregnant twice, but both times having ectopic pregnancies, which almost killed me.

I'm constantly being barraged by other outside forces these days too. My lately nomadic lifestyle, my impulsive decision making, and not being grounded, keeps these deep-seated feelings buried alive, keeps me at ground zero, prevents me from getting from point A to point B, and hinders me from making any real progress.

By ACHA on 7/11/2011 11:07 AM

By Stephie Goldfish

As a young girl, I often watched shows like The Bionic Woman in admiration of the ease and speed with which she moved. I dreamed of running a marathon, even though I had trouble running one lap around the track field. I had hope in modern medicine and what the future might bring.

Some of the medicine and technological advancements that have been discovered since 1983, the year I first was diagnosed with my heart and lung problem, require being seen by medical doctors and scientists who specialize in my specific heart and lung physiology, which is usually at a medical facility located in large metropolitan areas, such as New York, Cleveland, Pittsburgh, Philadelphia and Raleigh/Durham.

By ACHA on 6/16/2011 10:06 AM

By Stephie Goldfish

For the first part of this blog post, click here.

The first ACHA Conference I attended was in the summer of 2005 in the New York/New Jersey area. I remember that day so well. I had been going through a separation from my now ex-husband. I was feeling sort of emotionally raw, having been out of touch with everyone at ACHA, and I was feeling isolated and sad. However, at the conference, I met some of the best doctors for my specific heart physiology and defect.

By ACHA on 6/14/2011 9:15 AM

By Stephie Goldfish

When I first was diagnosed with a large ventricular septal defect (VSD) with Eisenmenger’s physiology at age 17 in 1983, I finally understood why I was always so blue. And, after the numbness wore off from knowing that surgery was not an option for my heart defect, unless I were to have a complete heart and lung transplant, I set my heart on graduating high school with high honors, going on to Art School in Pittsburgh, PA, and graduating at the top of my class in December 1985.