Alexandra Rolland | Heart Warrior of the Week
Our Heart Warrior of the Week is Alexandra Rolland, an adult CHDer with a very unique story – she wasn’t diagnosed with her defect until she was 19 years old. We talked with Alexandra, this is what she had to say about CHD, healthcare, and advocating for adults living with congenital heart disease.
Save the Heartbeat: What is your heart defect(s)?
Alexandra Rolland: Bicuspid aortic valve (BAV), which resulted in significant regurgitation and dilation of aortic root.
STHB: When were you born?
AR: Feb 20th, 1990
STHB: Were you diagnosed in-utero?
AR: No. I was diagnosed as a 19 year old.
STHB: Wow, that’s a long time do be living with an undiagnosed CHD. How did doctors discover your defect after all those years?
AR: I was otherwise healthy and went to my family doctor for a routine appointment. She was doing routine exams and had a listen to my heart. She noted that she heard a very subtle murmur. And that’s how it all started!
STHB: How many surgeries/procedures have you had?
AR: I’ve only had one surgery (August 2017) to replace my aortic valve and root. Prior to that I had a loop recorder implanted in the autumn of 2016 but that is just an outpatient procedure and not a surgery.
STHB: Can you tell us more about your surgery in August of 2017? What kind of surgery was it?
AR: I had a Bentall Procedure. This replaced the root of my aorta as well as the aortic valve with an artificial piece. The purpose of this surgery was to correct the Bicuspid Aortic Valve by replacing it. It is meant to be a “curative” procedure and by having an artificial valve and root, the hope is that it will not need to be done ever again.
STHB: How much time did you spend in the hospital after your surgery?
AR: Related to my CHD I have only spent about 10 nights in the hospital. Prior to having surgery my health declined quite quickly and I fainted a number of times resulting in a few stays to monitor my cardiac function. I was also admitted for 7 days when I had my surgery last August.
STHB: Do you have to take any medications to maintain your heart function?
AR: I take Warfarin for anti-coagulation. I do not currently have a blood clotting issue but I take the medication to ensure that no clots adhere to my artificial valve (which would cause a lot of complications).
STHB: Will you have to take this for life or is it something more temporary?
AR: I will take this (or some method of anti-coagulation) for the rest of my life.
STHB: Are there any restrictions you face as a result of your CHD?
AR: I used to have a lot of physical restrictions in the months leading up to my surgery, however now that I have had surgery I do not have restrictions.
STHB: You mentioned the fact you now have an artificial valve might mean you won’t have to have any more tune-ups. Do your doctors anticipate you needing any other surgeries as a result of your heart defect?
AR: The hope is that I won’t need any more surgeries. I am currently waiting to see a plastics specialist regarding my scar as it has become quite hypertrophic and needs some treatment. But related directly to my heart I [hopefully] do not need any more procedures.
STHB: Are there any worries or challenges you have faced/continue to face being a CHD Warrior?
AR: When I was originally diagnosed I was quite frightened as within an instant I went from being a healthy 19 year old to being a 19 year old with a congenital heart defect. This was quite an adjustment for me but I quickly realized I was still not physically limited and was still able to accomplish all of my dreams.
I am so lucky to live in a country where I do not have financial burdens associated with my healthcare.
STHB: Is there anything else you want to share that we haven’t touched on?
AR: I’ve been exceptionally fortunate to have my wife support me through my journey to surgery in the last few years. What I have noticed is that there is a lot of information available for young patients who have CHD, and lots of information for adults with acquired heart disease, but there seems to be a lack of information or advocacy around being an adult with CHD. This has been challenging, in particular when preparing for surgery and trying to find information about what it is like from the patient’s perspective. This is why I started an Instagram account called @thelittleheartthatcould, I figured it might help other people and it has been hugely helpful to me during my recovery as I’ve been able to connect with other adults who are living with CHD and having surgeries in adulthood.
Bicuspid Aortic Valve – Learn the Facts
Anatomy: Normally, the aortic valve has three small flaps or leaflets that open widely and close securely to regulate blood flow. With BAV, the valve has only two leaflets.
Complications: Because of this deformity, the valve doesn’t function properly. This results in inhibited or leaky blood flow, which affects the overall heart function and leaves the body with low oxygen. Aortic aneurysms, heart infection, and narrowing of the aorta can also occur. However, a bicuspid aortic valve may function adequately for months or years without causing symptoms or obvious signs of a problem.
Symptoms: Shortness of breath during activity, dizziness, fainting due to lack of blood flow to the brain, and heart murmurs.
Treatment: Options include surgical repair or medications, while some patients may not need any intervention at all.
Prevalence: BAV accounts for approximately 2% of all CHD’s. It is twice as common in males as it is in females, occurring in 4.6 out of 1000 live births worldwide.