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Becoming Part of a Crucial Mission

Tuesday, October 07, 2014

By Daniel Spandau

I am glad to say that I am one of the more senior members of the CHD clan—born in 1954, Blalok-Thomas-Taussig Shunt in 1956 and “full repair” of tetralogy of Fallot in 1960. I had some follow-up care for the next 10 years and then nothing for 30 years. As I was turning 50, I applied for some life insurance and needed a cardiac review. As you may have guessed, I did not get approved for additional life insurance, but was put on a path to meet some of the most incredible people.

My cardiologist, a truly amazing cardiac physician for people with acquired heart disease, realized that I need special care. Based on my history, he advised me to see a specialist who was familiar with CHD. At the age of 57, I was back with a pediatric cardiologist.

The limited CHD research has already identified many life-saving follow-up issues that must be reviewed with every one of us CHDers as we become adults. I was fortunate enough to have had electrophysiology testing that identified a need for an ICD. For many of us, they are like guardian angels that monitor us all the time. A year or two later, a catheterization was done to get a better understanding of my current heart condition. I am doing very well now, but know that in the near future I will need a pulmonary valve replacement (PVR).

I am clearly one of the very fortunate ones who had limited complications and was lucky that follow-up care missed for 30 years did not end badly. But… how many of my brethren survived? How many could be leading a full life, but lost their battle unknowingly, unaware that hidden complications could cause them harm? That thought brought me to ACHA, an organization with a mission to never allow this to happen again in the future.

There are now millions of us living as adults. Surgical techniques have improved the chances of survival dramatically. Follow-up care has not. ACHA is focused on getting this message out in many ways. Through research, advocacy, public and social awareness, and so much more, ACHA is gaining ground on saving lives every day. As a member and Ambassador I am now part of a mission that can easily save lives.

This past month my wife and I attended ACHA’s 7th National Conference in Chicago. We were both excited to attend, but had no idea how amazing this experience was going to be. We both learned so much in all areas. My mission was to find out more about PVR and developing techniques. The conference allowed me to meet other patients, attend lectures, talk to cardiac physicians and hear about research targeted to my surgical needs. My wife was there as support, but steered me to seminars on exercise, diet and psychological aspects. I signed up for studies and had drinks and dined with some very special people that are on staff or volunteer at ACHA.

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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.

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