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 2/26/2016 10:41 AM

By Ellen Greenberg

For the last two years, I have been dealing with chronic migraines—the worst kind. My cardiologist is not sure why I am living with this type of chronic pain. I know that many of us CHDers live with chronic pain. My neurologist is bewildered as to what to do for me—due to my multiple congenital heart defects—and common migraine medications have been difficult to administer.

By ACHA on 10/28/2015 11:52 AM

By Ellen Greenberg

This month I had the pleasure of participating in my first Congenital Heart Walk benefiting the Adult Congenital Heart Association and The Children’s Heart Foundation. To say that I was motivated and excited would be an understatement, because my goal is always to raise awareness.

By ACHA on 7/20/2015 11:59 AM

By Ellen Greenberg

I think that as CHD patients we may have more medical knowledge than the average person. It is said that knowledge is power. But as CHD patients, is this power helpful or hurtful? The more we know, the scarier our own personal situations can be. This knowledge can also be a helpful tool. I like to feel the positive—that it is power.

By ACHA on 3/24/2015 11:52 AM

By Ellen Greenberg

Dear Pediatric Cardiac Team,

I’d like to tell you that April will mark a huge milestone in the course of my life, as it will be 30 years since that tiny first grader—me!—Ellen Jenny Greenberg, had her first of many surgeries. Yes, you read correctly—30 years since my classic Fontan procedure. I still remember explaining my surgery to my class, and one boy saying, “So you’ll be dead during it,” and my quick response was “No, the machine will be breathing and beating my heart for me.”

It would be a treat to somehow see all of you and give you a great big hug and kiss for providing me with this precious gift of life.

By ACHA on 12/9/2014 12:01 PM

By Ellen Greenberg

As I sat down to write about limitations I caught an episode of Fear Factor. I have never watched this show in its entirety; however, I found myself both engrossed and grossed out by it. This past year I began to realize all of my limitations and how to work within them.

I am always the girl with the can-do attitude. I often strive for things that seem impossible to many. For instance, I recently received a master’s degree. I auditioned for America’s Got Talent last year, because it was in Manhattan—close enough to where I live and I owed it to myself, for the sheer experience of the thrill, nothing more.

By ACHA on 4/25/2014 12:04 PM

By Ellen Greenberg

Previously I blogged about how I felt “like the smelly girl on the playground” because the state of my healthcare had declined to such a point that doctors were turning me away for migraine headaches. They would see my incision and basically turn me away.

Unfortunately, my cardiac care was not what it used to be when I was in pediatrics. So this was an extra frustration, especially as I am the one paying the copays. I am also the one taking a total of 15 pills a day. I have what I refer to as my "granny bag of meds”—and that’s exactly what it is only because my grandmother is on a few of the same.

I am happy to report things have changed for the better!

By ACHA on 1/10/2014 9:34 AM

By Ellen Greenberg

In 2013 I took many chances; the best was the one of a lifetime. Not everyone was behind me on this decision at this time in my life—I was fighting a horrible cold and had just started a new job, and so my voice was pretty hoarse. However, with my go-getter attitude I thought if I don’t take this chance I would be doing ACHA and myself a disservice. I practiced, rehearsed, changed my song two weeks before, figured out the 90 seconds allotted, and with help, picked out my outfit the night before.

By ACHA on 11/25/2013 2:53 PM

By Ellen Greenberg

This summer I graduated with my master’s degree. Upon graduation I became extremely sick with migraine headaches. For four months I laid in the dark of my bedroom feeling as if I was literally having open heart surgery on my head.

None of the doctors knew what to do for me. I had a CT scan both with and without contrast. Nothing was found. So the neurologist I had placed me on steroids.

This did not work. I was met with resistance for more steroids when the first round did not work. A headache specialist suggested admitting me for intravenous high dose steroids. The neurologist said “NO,” because “should something happen, her cardiologist would not be there.”

By ACHA on 5/30/2013 11:14 AM

By Ellen Greenberg

I feel that embarking on a new situation is extremely scary and comes with constant worry and doubt. People who appear confident might have that as a front so no one sees their fear, but everyone feels it. We wonder if this is the right choice, how long until I know for sure that this is what I want, or do I even like my decision?

People want to know what the easy way out is. Well, guess what? If you have the drive and want to be successful, there is no easy way out. We as patients and people know this on a daily basis. If you breathe, you are going to take chances and risks.

By ACHA on 2/15/2013 1:18 PM

By Ellen Greenberg

Birthdays come but once a year. However many we have is up to us. I celebrate two birthdays each year. My actual birthday is February 15 and my other is my “Fontanniversary,” the anniversary of my Fontan revision (on May 10, 2006). I do not think it matters how many life-living achievements you celebrate; as long as you feel the need to acknowledge the day in some way, no one can say you are right or wrong.

By ACHA on 12/28/2012 2:30 PM

By Ellen Greenberg

I believe the holidays do something to people. I think it makes us introspective. Such as, what can I change about myself, where did the year go, was I a good person? People begin to share and care. Is this for real or is it for show to make them feel better about themselves and end the year on a high note? I do not know; I cannot speak for others.

But I can speak for myself. I know that I have worked extremely hard and conscientiously at all of the above all year. However, I am closing in on a big educational accomplishment—achieving a Masters Degree in Early Childhood Education and Early Childhood Special Education.

By ACHA on 10/1/2012 2:50 PM

By Ellen Greenberg

As a child, I always called September “hell month.” I called it this because I, like other CHDers, grew up with learning disabilities. What does this have to do with September and the name I chose? When school began again, it was scary to have to deal with new teachers and explain that you have a learning problem, and give them notes from your cardiologist on the days you were absent. These were fears that ran through my mind at the beginning of the year.

By ACHA on 8/8/2012 2:42 PM

By Ellen Greenberg

One year ago, I was extremely ill. I was full of ascites and having belly taps every week to every other week or so. The doctors did not know what to do, or how to help me aside from pumping me full of diuretics and giving me belly taps. I began to look anorexic on top and without hips my pants would get lower as the day wore on and my belly filled up. It literally felt as if there was a water bed inside me.

Since this seemed to be uncharted territory for my physicians and the team, they started to call me the mystery. On a more personal note, this helped my self-esteem immensely. Can you hear my eyes rolling and sense the sarcasm? I began to make up a story about my belly and what I would “call the baby when she was born.” Mind you, the due date constantly changed depending on my size.

By ACHA on 7/6/2012 10:39 AM

By Ellen Greenberg

Two months ago, I witnessed unkind treatment by my team. I started to have strange symptoms at first; we thought they were side effects of Valtrex that was treating my shingles. When these symptoms worsened every day, they mimicked panic attacks. I could not breathe or walk up the stairs without stopping, and suddenly I napped in my bed every time I got to the top of the stairs.

By ACHA on 4/13/2012 2:28 PM

By Ellen J. Greenberg

For my first blog, I wanted to talk about all of the letters that are a part of our lives—specifically LD, which to me stands for learning disabilities. No one knows exactly why, but people with CHD are more likely to have learning disabilities. As if life can’t be hard enough sometimes, you add all the labels or acronyms to our lives. Whether we want to be “labeled” or not, we somehow are. We receive labels from our doctors, from our schools and teachers. Eventually friends catch on. Therefore, if you wanted to keep these things private, forget it—because society already has the letters that label us.