Most people, when asked to describe heart disease refer to heart attacks.  However, as we all know, there are a wide variety of heart related issues, or even mysteries, that require attention and additional research.  I believe my story is one that could open the public perception on the subject as it provides a glimpse into the life of someone with congenital heart disease and how it affects daily and long-term life. 

I was born 32 years ago, along with my identical twin sister, in a suburb of Minneapolis, Minnesota. We arrived precisely on our due-date; I was the second born, weighing 7lb 4oz.  Awaiting me was a team of surgeons ready to repair my pulmonary valve, which they already new was not completely functional. Within hours of my birth they did an emergency open-heart surgery to open up my completely closed pulmonary valve, the prognosis was uncertain. After a long, but successful operation they were able to open up the tiny valve to allow it to do its vital work in the heart.  I was then diagnosed with post pulmonary valvatory heart disease and after recovery would be able to go home to my family.

I recovered fairly quickly and the only evidence that I had had surgery was a scar that ran down my chest, a terrible scar that would grow in length as I did.  As time past and I grew as a normal child it came to my parent's attention that my chest wall did not appear to be growing and expanding as it should be.  It was then discovered that the structure of my rib cage was not solid and my parents were told my breast bone would eventually require additional support.  This required two additional surgeries when I was 11 years old.  The original surgery involved the insertion of a metal support bar in my chest to keep my breast bone from collapsing; it was to remain inside supporting my breast bone for up to two years.  However, after six short months it began to push out of my side and they were forced to remove it early. Even though it came out early it was a great improvement for me and enabled me to return to the life of a normal child.  Other than my scar from the multiple surgeries, the only other visible sign I was any different was that my lips would turn blue when I got real cold, like in the swimming pool, for example.  But other than that I was back to normal life.

I was able to lead a fairly normal childhood right through young adulthood before things would again change for me.  By the time I reached twenty-five, I began to get tired really rapidly, was short of breath and felt lethargic and I would then learn that my pulmonary valve had stopped functioning properly.  There was now excessive blood flow backing up in my heart and it had caused the right side of my heart to almost double in size. I saw several doctors at this point and my case was taken to a board of heart doctors at the University of Minnesota for evaluation. At the time there was not a lot of research done on pulmonary valve replacement and my doctor was uncertain of the outcome or longevity for me thus to provide me the best care and opportunity to return to normal life he wanted my case to be reviewed by a team of the best doctors and the decision would then come from that team and not just one doctor in regards to any potential solution. Upon lengthy discussions and review it was decided to put in a bio-prosthesis heart valve (a porcine or pig valve). Because I was so young they felt this type would be the most beneficial, allowing me to lead a normal life where I would not be dependant on any drugs, including Coumadin.  So I embarked on another major surgery.

On November 25^th, 2002 I had my third open-heart surgery. When the specialist team went inside, they found out that I had never actually had a valve, or if I had it had disintegrated; there were only remnants of leaflets but no actual valve. The inserted my new pulmonary valve and examined the rest of my heart. They then found an aneurysm on the right side of my heart which they removed, and they also had to repair my tricuspid valve, which was leaking due to overuse because of the lack of functionality from my mostly absent pulmonary valve.  I spent 9 days in the hospital and I was on coumadin for 6 weeks. I was told my valve would last anywhere from 7-10 years, and was given a new bill on life.

My life did return to normal for a time and I enjoyed every minute.  At that point however, it was not to last, there were still changes occurring in my heart.  Several years later I began to experience a racing heart, even in my sleep it felt as if I was climbing a mountain, so back to the doctors I went.  This time I was in Texas and in September of 2005, I was diagnosed with atrial tachycardia and extremely rapid heartbeat. My doctors tried to control it with medicine with no results, so they attempted a catheter ablation - also unsuccessful. I was put back on several different medicines for 6 more months, and in July they attempted another catheter ablation, which worked.  Unfortunately, however, there where too many dysfunctional nodes and because of the location of some of the arrhythmias (my AV node), they could not repair my racing heart.  They explained to me that my AV node was creating the largest of the racing heartbeats and if they ablated the AV node my heart would die, the only solution would be to then install a pacemaker to be the new pacer of my heart.  After two long weeks of personal research and talking with my doctors, the decision was made to put in the pacemaker.  I had the surgery on August 11, 2006. Afterward, I was in a brace for several days and not able to drive for three weeks. It dramatically improved my energy levels, and, therefore, my quality of life.  It does require ongoing medical care and I must see my electrophysiolgist every 6 months.  But, once again I was able to return to a normal life and for that I was thankful.

My return to normal life was shorter this time however and in April of 2008 I spent my birthday at the emergency room due to extreme pain in my chest.  They released me after several tests and told me to see my cardiologist and that they could not find the answer to the pain.  The next six months was spent going from doctor to doctor to find an answer as to why I had so much pain and to find a resolution. I finally found out that my lower part of my ribcage had overgrown inward and was putting pressure on one of my lungs, and my liver, it needed to be fixed.  Back to the operating room, on October 21, 2008 I had surgery to remove the excess overgrowth of rib cartilage.  It eliminated the horrible chest pain I was having and has returned me to good health.

I am glad to be back in stable and good health.  I know that I will probably not escape having to have another valve replacement, outside of a miracle, but I do hope, of course, that by the time of my next surgery, significant progress will have been made, such that I may not have to have another open heart surgery but perhaps a less invasive surgery to replace my valve.  In order for that to occur more research must be done and more funds must be provided to the research for congenital heart defects and valve replacement.  To help in that effort I am telling my story so people can hear how congenital defects affect the daily life of an individual and understand why funds and research are needed to improve the quality of life for those with these conditions. 

As you can see my life has already benefitted from many advances in technology and for that I am extremely thankful, but as I mentioned we must not stop there, it is extremely important to continue to dedicate funds to advance our understanding.  I believe that my story will help many, as it highlights the complexity of the heart, the benefits gained in the quality and longevity of life through advancements in technology, and the need to further research this life-giving organ.   

If you have a heart journey you would like to share, please email your story to newsletter@itsmyheart.org

Is your child born in January?  Please send us your child's birthday and picture so we can all celebrate your child's birth with you!