For most adult chd’ers we have grown up with our defect and have not known any different, but what if we don’t find out until adulthood? How do we cope? What is our reaction? Elizabeth Berry will tell us all this in her personal story which she has given CHD-UK to publish on the website.
Country: United States of America
1 in 100. It is that simple. Every year one in a hundred children are born with a congenital heart defect. Some are caught from birth, others are caught later in adulthood. Mine was the latter of the two.
At the age of 25 I was diagnosed with a bicuspid aortic valve, and little did I know the meaning of the journey that lay ahead of me would tell.
I’ve always believed that you never get more than you can handle, and in this case it was so true. Being active for all my life, and then hitting bottom, being as weak as a kitten and having to go into a certain level of heart failure before surgery could be done really takes a toll on a person.
My heart journey began in January 2005. It was at this time, I was starting to notice chest pain a little more frequently, and not really understanding why I was so tired, and just in lack of a better word, exhausted all the time. Simple walks were wearing me out and I was becoming light headed and dizzy. I went to see a cardiologist (seeing as congenital heart defects run rampant in my family), and wanted to see if I was just having mild issues. It was then that I was told that my murmur was a bicuspid aortic valve. We started testing to see how severe it was and what could be done. (Family history: I have a sister who was born with aortic coarctation and a bicuspid aortic valve who had heart surgery as an infant, we lost a brother due to a heart defect, myself, and now the newest addition to that side of the family, my nephew who was also born with a aortic coarctation, bicuspid aortic valve and a VSD [Ventricular Septal Defect]).
I went to have my first ECHO (echocardiogram), TEE (Transesophageal Echocardiogram), tilt table test, holter monitor, EKG’s, x-rays, stress tests (yes both, and the nuclear one hurts when your heart isn’t functioning properly). I was now a heart patient.
During the course of treatment I had seen two doctors, and both were baffled as to why my symptoms came on so suddenly. I was told by one that someone my age doesn’t have chest pain that severe and I should maybe see a shrink. That is not something that you want to tell your female patients!
On one particular bad night, I had passed out at work, and one of the girls got an EKG for me. I saw a close friend rounding the next day, and asked him to start seeing me as a patient. My first appt with him was to try and decide if medications would help with the symptoms. I was on 9 different meds, all for my heart and had my own loud heartbeat to help me sleep. You could hear my beat across a room without a stethoscope. In September of 2005, I went to see my cardiologist, and had my first echo since January done. When your cardiologist is standing there, and says “Oh $*%#!, we need to talk surgery,” you don’t quite feel the same. That night I was admitted to the hospital and taken emergently to cath lab. It was decided we would do a surgical consult and with Dr. Ewy we decided we would try meds one more time, and discussed valve options at this point.
The following month after walking into the hospital where I worked, Dr. Ewy had just come out of surgery and told me that I wasn’t looking too good. I explained what had been going on, and left a note on the OR schedule like he had asked. The next afternoon, October 6th, I got the call…You are scheduled for open heart surgery. To be honest with everyone, I called the office more times than I could count to cancel. I was scared, and not sure how to deal with this. Me and my husband had only been married a year and a half, and now I was going to have heart surgery.
October 13th, 2005: My Heart Birthday: I went in to get prepped for surgery. I tried to stay calm and laughing while I was waiting to go back to pre-op, and did quite well until I made it in to pre-op. I started crying in pre-op, was scared, didn’t know what was going to happen, just that I wanted to make it through surgery. My heart team are some of the greatest people in my life still to this day. When they were prepping they were telling me that there was a young girl that was going in that day, and they wish that I could be there when she came out of surgery. It took them a few minutes to realize I was the one they were talking about. I went into surgery that morning. Surgery had some minor complications. Not only did they have to replace my aortic valve, but they ended up rebuilding my aortic arch in the process. I was in for 6 1/2 hours. When time came to take me off the bypass machine, I apparently threw a clot, and suffered a stroke, and my heart refused to start beating on it’s own. They worked me for 45 minutes in the OR just to get me back. Now when I look back, it just means to me that I fought harder to come back out. I was taken to the ICU and stayed there overnight.
My recovery was fairly routine, but now I had much more appreciation for what open heart patients go through when they themselves become members of the highly elite “Zipper Club”!!!!
In March the following year, I called Kevin at work, and told him I was pregnant. 5 months after open heart surgery, and we are expecting a baby. The first response from the OB doc was to terminate the pregnancy, my body wouldn’t be able to take the flow load. I talked with my heart team, told them what was going on, and they said that from a cardiac standpoint I was good. After all the docs talked, me and Kevin were going to be having a baby. Original due date: October 30th. With the pregnancy came complications. In June of ’06 I called Medtronic, the makers of my spiffy new valve, and asked if there were any previous complications with patients and pregnancy. I was told at that time, that no one in the US had ever been pregnant with the valve that I had, let alone tried to carry full term. Me and the baby became a Medtronic case study. I started having really bad blood pressure issues, swelling, and in August was put under “house arrest”.
In September, I went to the doctor, and was admitted to TMC because some of my labs came back a little weird. A week after admission, the doctor told me that my kidneys had shut down, and that they were going to induce labor to get the baby out. Induction was September 28th, and on the 29th, me and Kevin welcomed a 6lb 1oz baby boy into the world. His name Kyle Michael Donald Berry. The docs hung tons of meds hoping to get the kidneys working again, and after 2 days they started going. Due to the stress on my body having Kyle, we won’t be able to have another child, but Kyle was truly a blessing to us. When people told us that I didn’t have a problem, I found someone to listen, when we were told that we should terminate the pregnancy, I told them to cram it.
In the more recent year of 2011, I had three wonderful trips to cath lab, and have since received a pacemaker, who is fondly named Bentley! After some complications with the inital placement, we are doing great.
I have joined a racing team called Ironheart Racing which is a team of athletes, who most of us are CHD patients and open heart patients. Many of them on the team all know the journey that life has given to us, is a very special one, one that reminds us that we are human and life is an amazing journey, never to be taken lightly.
With all that I have gone throught, I’ve had the opportunity to work in conjunction with the American Heart Association, and sit not only on the Heart Ball committee, but the Heart and Stroke Golf Classic as well. In 2009 for the 50th Anniversary of the Heart Ball, I had the honor to speak at the Ball as a survivor. Later that year, I was honored to become a Medtronic Global Hero. It is the opportunity to be one of 25 people from around the world that Medtronic sponsors to be part of the Twin Cities Marathon. That experience is one that I never forget. I met so many amazing people and others, who like me, have had heart surgery or medical implants, but it doesn’t stop us from living life to the fullest. With all of this, I am also very active with Mended Hearts and Mended Little Hearts, the Adult Congenital Heart Association, and the local American Heart Association Chapter.
Since my journey began there has been a lot of soul searching, and what exactly life means, but it comes down to three simple rules: Love life and the people in it….They are the ones who help you on your journey. Live life to the fullest…you never are sure when you might not be around. And last but not least, never give up, you can do anything, and little ones can do anything with the right support. My journey would not be complete without the love of family and friends, the support from the many fellow heart brothers and sisters I have made, and the support from the groups that I am involved with.
“Reach high, for stars lie hidden in your soul. Dream deep, for every
dream precedes the goal.”
Wrote by Elizabeth Berry
Elizabeth Berry has kindly given CHD-UK permission to use the above photographs.