NICOLA

AGE: 50

DIAGNOSIS: Transposition of the Great Arteries(TGA), Ventricular Septal Defect(VSD) 

DIAGNOSED: A few days after her birth.

I wrote as we started CHD Awareness week, how 1 in 80-100 babies are born with CHD. Over 60 years ago, only 20% of children would live into adulthood, but with all the advances in research and development, today that number has increased to 90%.  Of the approximately 257,000 Canadians who have CHD, two thirds of those are adults, and at least half face possible complications and multiple surgeries throughout their adult life.

My friend Nicola was so kind to offer her perspective as an adult living with heart issues. She has had her share of cardiac catheterizations and exploratory surgeries. Her first open heart surgery was at the age of 2. She was one of the early cases for the Mustard procedure (to correct TGA) as well as one of the original Glenn Shunt procedures (open heart procedure that temporarily improves the flow of blood to the lungs). She went on to have 2 more open heart surgeries at age 10 and 30 years old. She says she remembers people commenting after her surgery how her colour was so much better. She was actually pink and not blue anymore.

Nicola had to have a pacemaker implanted 8 years ago which was unsuccessful and was quickly followed by a defibrillator to keep her heart stable. She tells me she will probably require another open heart surgery in the future for another valve replacement. Unfortunately for Nicola, they cannot do some of the modern procedures on her because of the volume of scar tissue and fibrilli.

Living as an adult with CHD involves annual cardiac visits and semi-annual “battery checks”. Nicola writes “I don’t let it define me. That’s important for me – that I’m more than CHD. Obviously it affects my day to day, however I have dealt with it so long I don’t notice. I know how far I can push myself, and sometimes push a little more than that but not too much. Cold is horrible and really seems to affect me. I can’t, and don’t want to separate it and treat it as a “thing”. My parents brought me up to believe I could do anything. I’m me first – that just gets in the way sometimes!”

According to the Canadian Congenital Heart Alliance(CCHA), there are far fewer resources allocated for the care of adult CHD patients. So wait times for clinical visits and surgical intervention are much longer than for other cardiac patients which can lead to added anxiety, added risks and even death.

Please stop by tomorrow as I finish this week with the story of a very special heart hero  – Abby.