Every year, 100,000 babies don't make it to their first birthday because of CHD.
Heart Warrior of the Week | Andrew Kay

We talked with Andrew Kay, a 52-year-old adult CHD survivor who lives with ventricular septal defect and damage from endocarditis that began when he was 50.

Save the Heartbeat: What are your heart defect(s)?
Andrew Kay: Ventricular Septal Defect (VSD)

STHB: And when were you born?
AK: May 26th, 1967

STHB: Were you diagnosed in-utero?
AK: I wasn’t diagnosed in-utero, it was caught shortly after I was born during a routine exam from a doctor before I was allowed to be taken home from the hospital.

STHB: How would you describe yourself in just a few words?
AK: Competitive, determined, caring, respectful, thoughtful.

STHB: Can you tell us about the surgeries and procedures you’ve undergone?
AK: There’s been numerous catheterisation procedures, from birth through the age of 21 to monitor the development of my heart and determine if surgery to correct the VSD was necessary. One CT angiogram at the age of 51 before my then upcoming surgery to review the condition of my veins and arteries.  One open-heart surgery in June of this year to correct the VSD and repair the damage caused by endocarditis.

STHB: How much time have you spent in hospital throughout all of that?
AK: Up to the age of 21 I just had to visit my cardiologist every 18 months for check-ups and minor tune ups. The maximum stay at any one time for those was about three to five days, totaling several months in hospital during my adolescent and teenage years.

As an adult I spent six weeks in hospital back in 2018 while being treated for endocarditis and six days for my open-heart surgery earlier this year.

STHB: Are you currently on medication as a result of your heart condition?
AK: I’m on 2.5mg of beta blockers and 20mg of blood thinning tablets.

STHB: Is this medication something you’ll take temporarily or will it be for the rest of your life?
AK: These are temporary and part of my pre-cardioversion treatment plan that will hopefully correct the irregular heartbeat I’ve had since my surgery.

STHB: Are there any restrictions you face due to your condition?
AK: No restrictions have been placed upon me and I’ve been encouraged to return to my normal lifestyle. The one thing is that I’m not seeking employment until my cardioversion treatment has been carried out and is successful.

STHB: When is that scheduled for?
AK: Later this month.

STHB: We’ll be thinking of you and hope everything goes well. How likely is it you’ll need more surgeries in the future?
AK: It’s quite possible. I might need to repair/replace my tricuspid valve in about 20-30 years’ time.

STHB: Are there any worries or challenges you have faced or continue to face being a CHD Warrior?
AK: Not really, or if there are I try not to focus too much energy or thought into it.  Having learned about the complications that can occur in old age if this condition isn’t treated, I’m so glad I’ve had the surgery to correct it.

STHB: Is there anything else you would like to add or share about your journey with CHD that we haven’t already covered?
AK: I guess I would like to stress the power of a positive mental state. For the majority of my life I’ve been petrified of having open-heart surgery but once I knew it was necessary I really focused on the outcome being positive. I had the advantage of waiting several months and in that time I took the opportunity to watch open-heart surgery ‘live’ on television. This helped me to understand the potential consequences of not having the procedure. In the end I was able to approach the day itself with a very positive mindset and had no nerves whatsoever. Of course having a supportive wife and loving family helps too.

About Adam’s Heart Defect

Ventricular Septal Defect (VSD)

Anatomy: This defect occurs when the heart’s inner wall (septum) that separates the left ventricle from the right ventricle has a hole or multiple holes in it. 

Complications: This hole allows oxygen-rich blood from the left ventricle to mix with oxygen-poor blood from the right ventricle, resulting in a lack of oxygen circulating throughout the body.

Symptoms: Bluish tint to the skin, lips, and fingernails, along with poor feeding, poor weight gain, and fast breathing.

Treatment: Most VSD’s close on their own with time, but larger ones will require catheterizations or open-heart surgery in which a patch is placed over the hole.

Prevalence: This is the most common CHD, accounting for 25-30% of all congenital heart disease. It occurs in 2-5 out of every 1000 live births worldwide.

Endocarditis

Endocarditis isn’t a CHD itself, but can be caused by CHD instead. It is an infection caused by bacteria that enters the bloodstream and settles in the heart lining, a heart valve, or a blood vessel in the form of a vegetation-like growth.  It is uncommon but people with existing heart conditions have a greater risk of developing it.  In children and young adults, about 75% of cases occur in those with CHD. It is twice as common in men. 

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