Lessons learned from a lifelong journey with heart valve disease

February 16, 2022

I was born with a congenital heart defect that was discovered when I was three years old due to a mild case of Scarlet Fever. It was thought then that I had a hole in my heart, and further investigation wasn’t needed until I was seven years old when I developed symptoms of extreme tiredness and profuse nose bleeds.  I was sent to a children’s hospital to investigate the symptoms further with a catherization, which revealed that my pulmonary valve only had two leaflets (instead of three) and they were fused together, making it difficult for the blood to squeeze through. My heart was working overtime and enlarging. Surgery was necessary, or I would not likely live past my teen years.

At age nine I had open-heart surgery to repair the pulmonary valve so that the leaflets would open more freely. After 10 days in hospital, I left with limited regurgitation. It was expected that I would be able to live a somewhat normal life moving forward and I assumed that this surgery as a child was a one-time fix.

During my childhood I had routine appointments with cardiologists and had to take antibiotics before the dentist or any surgical procedure, but otherwise I did not experience significant limitations in participating in life.

However, at age 57 I began to have elevated blood pressure and was put on medication. Over the next three years, I experienced increased stress at work and by January 2020 I was sensing that something was not “right” with my heart. I went to my GP for advice and, at the time I was waiting on an ECG (echocardiogram) booked for April 2020, so I was advised to wait until that was completed. In the meantime, I took stress leave from work and noticed continued spiking heart rate levels.

The symptoms I was experiencing beyond this were shortness of breath, fatigue, and chest pain. The symptoms worsened over the next few months to the point that I was avoiding stairs and limited walking anywhere. Any activity seemed to spike my heart rate significantly. I had no energy and constant shortness of breath. Despite being exhausted, I had a very difficult time sleeping and would often wake up gasping for breath.

My ECG turned out to be the beginning of a series of tests: Holter monitor, CT, blood work, ECG’s, TEE (Transesophageal echocardiography), Chest X-Ray, Angiogram and eventually an MRI.  It was determined that my pulmonary valve was dilated and severely leaking along with being flailed. The right ventricle was enlarged, and the pulmonary arteries somewhat dilated as well. Surgery to insert a replacement valve was the clear and only solution.

The COVID-19 pandemic complicated and delayed treatment significantly. I waited from January 2020 to November 2020 before I was able to get all the diagnostic tests I needed, and the surgery booked. My cardiologist was very up front that the decision would be mine for treatment. I had researched different heart valves available and discussed these with my cardiologist before surgery, weighing the pros and cons of each. It was hoped that the valve could be replaced through an artery, however, the MRI concluded that was not possible as my pulmonary valve and artery were too dilated. A mechanical valve was not an option as there were too many issues with blood clotting and blood thinners to make it feasible, so it was decided on a cow pericardial tissue valve. My surgeon was amazing in accommodating my request to totally remove the old scar on my chest, so I'd only have one new scar upon completion. VERY important to a girl!   My surgery was done on November 16, 2020.  

I have seen improvements in my capabilities compared to before my surgery. My heart is functioning much better and I am not experiencing shortness of breath like before. I’m following the advice to be disciplined in a walking routine and have built up to 30 minutes per day. As a Type A personality, it is challenging to accept limitations, but I value the need to prioritize my recovery and follow the medical advice of my doctors. The cardiac rehab offered at the hospital for six months was a great help in accountability, education, and online exercise options. Today I have additionally made my way back to the gym two or three times/week and have added strength training as part of my recovery.

My advice for others with heart valve disease is that it is critical to be your own advocate. In hindsight, I would have been more insistent in getting an appointment when I felt something was wrong rather than waiting for the echocardiogram. COVID-19 also posed challenges as it pushed back wait times for tests and results. Understanding that doctors and clinics face significant challenges during these times, I would remind others to go to the hospital or emergency department if their symptoms are worsening. It is the best way during the pandemic to protect your health! Finally, I also believe it is important to retain copies of your surgery reports and tests. Having my original surgery report from 1969 was most helpful to my surgeon and cardiologists.

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