Living with a Congenital Heart Defect: Kristel Caisip Shares Her Story

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Update Date 17/10/2020 . 4 mins read
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Kristel Caisip is a survivor. She was diagnosed with pulmonary valve stenosis when she was just two years old, with a heart murmur being one of the earliest clues to her condition. Without treatment, people with pulmonary valve stenosis can experience infections, irregular heartbeat, or even heart failure.

In order to prevent these possible complications, Kristel underwent two life-saving surgeries; the first one was when she was just two, and the second when she was 27. And she is anticipates undergoing more in the future.

In our interview, she shares how their family found out about her condition, and how it feels to undergo two major surgeries at such a young age.

Kristel Caisip on Overcoming Pulmonary Valve Stenosis

Heart Valve Stenosis, Explained

I was born with pulmonary valve stenosis and later, developed a leaky pulmonary valve. Because of this, I had two open heart surgeries to treat both conditions – open pulmonic valvotomy and pulmonary valve replacement (wherein horse tissue was used in part of the surgery. Thus, I am part horse!). I also underwent tricuspid valve repair.

I’m passionate about technology and using it to make things easier for everyone. I work as a software developer for a data analytics firm and I build IoT (Internet of Things) solutions with my fellow “computer geeks” and travel with my loved ones in my spare time.

pulmonary valve stenosis

How did you find out that you had a congenital heart defect?

When I was born, my doctors possibly heard the murmur but assumed it was a respiratory infection that I caught from my mom (she had the infection a week before I was born). When I was about 2, our pediatrician noticed the murmur during my monthly medical check and referred me to a specialist. That was when my parents found out about my condition.

Did you have any symptoms that were related to your condition?

I was a healthy and active child, and there were no apparent symptoms. Though my parents noticed that I always asked my dad to carry me (I was/still am particularly attached to him!). They never thought it was because I got tired easily.

Were you taking any medication or other forms of treatment before undergoing surgery?

No.

Why was surgery recommended for your congenital heart defect?

The first surgery was to treat my severe case of pulmonary valve stenosis. The second surgery was to treat the severe pulmonary valve regurgitation that also affected my tricuspid valve.

What forms of therapy did you undergo after surgery, and how are you staying healthy?

There was no therapy required post-surgery, though my nurse told me to walk around the hospital ward a day after my surgery to get my lungs going and prevent me from getting pneumonia.

Before I was discharged from the hospital, my cardiologist and surgeon told me to exercise regularly but to refrain from running during the first couple of months. So, I just walked. A lot.

The doctors also told me that I was not allowed to take recreational drugs and smoke, and that  I should watch my weight.

I run regularly (3 times a week) and do yoga/ Pilates most days. I found those activities are great for both my physical and mental health. And I also try to eat healthily, and I have been doing 16/8 intermittent fasting.

pulmonary valve stenosis

How did you feel after undergoing heart surgery twice?

I do not really remember the first surgery. My parents said that my older brother and I started to squabble as soon as I got back from the hospital (like nothing happened!).

For my second surgery, to be honest, I just wanted to get back to work because I felt like I was letting my team down and I was bored at home.

How has your experience affected your mental health?

My cardiologist told me that there is a possibility that I would “feel down” after the surgery and advised me to get back to work as soon as possible. The top part of my chest incision did not immediately heal, so I was off-sick for longer than expected.

I was diagnosed with clinical depression and severe anxiety, and my doctor prescribed me with anti-depressants. I never took them though; the full box is still in my cupboard and I keep it as a reminder that I was able to overcome it without meds. I worked with my doctor to take an alternative, drug-free route.

As someone who has undergone 2 heart surgeries, what advice can you give for other people born with congenital heart defects?

I can only speak from my experience and having a healthy support system helps a lot – I am grateful to be surrounded by amazing people. Also, I guess, I accepted my condition and that I cannot do much about it. I try to focus on things that I have control over.

Also, growing up, I did not get special treatment from my parents because of my condition. They treated me the same as my siblings and I would get constant encouragement from them. So early on, I learned and believed, and made sure that my condition wouldn’t impede me in any way.

Note: The experience of every patient varies. It’s still best to consult a doctor for the best treatment and preventive measures for medical conditions.

Learn more about Heart Health here.

Hello Health Group does not provide medical advice, diagnosis or treatment.

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