Managing a Rare Heart Condition
There are different types of Dextrocardia that affect the body in various ways. In some cases, the heart is on the right-hand side of the body and flipped over, which is sometimes referred to as ‘mirror image’. In more severe cases, other organs in the body are also affected and positioned incorrectly.
Although it’s rare, if it’s only the heart which is impacted by mirror image, it can still function normally.
The causes of Dextrocardia are currently unknown, however, if other problems are apparent like lung and chest defects, it can have an impact on the way the heart develops.
The Journey to Diagnosis
Leanne, 25, was diagnosed with Dextrocardia when she was born. Congenital diseases can be noticed on pregnancy scans, but it can be difficult for specialists to provide an official diagnosis.
In Leanne’s case, only her heart is affected, and it’s positioned on the right side of the chest, instead of on the left. Although her heart can function normally, she was born with other heart problems which continue to affect her today.
“I was diagnosed before I was born, but the doctors didn’t get it right the first time. My condition was misdiagnosed as Spina Bifida. They advised that I would never walk or be able to lead an independent life.
“My mother sought a second opinion because she had felt me kick throughout her pregnancy. It was then discovered that the problem was with my heart. The specialists said that they would know more once I was born and that I would be healthy.
“When I was born, I was diagnosed with Dextrocardia. I was also suffering from Mitral Valve Regurgitation, which means that one of the valves in my heart didn’t close properly and was leaking. I also had two holes in my heart that needed to be closed.”
Undergoing Multiple Heart Surgeries
Mitral Valve Regurgitation can be extremely severe and sometimes fatal if left untreated. It causes the blood to flow in two directions while the left ventricle contracts. As well as being pumped through the valve, some blood returns to one of the heart’s collection chambers.
As Leanne received an early diagnosis, her Mitral Valve Regurgitation is controlled. Throughout her life, she has undergone open heart surgery three times.
“My first operation was at two-years-old, to close the holes in my heart and repair the leaking valve.
“The repair needed to be done more than once due to growing through childhood. When I was five-years-old, I had a second operation to repair the leaking valve.
“I had my most recent surgery at 21-years-old, to replace the valve with an artificial one. I was given the option to repair the valve again, but on average a repair only lasts 10 years, which means having further surgery.
“The replacement was much more permanent. I could have chosen a tissue valve or a metallic valve. I opted for the metallic valve as it has a longer lifespan.”
All of Leanne’s surgeries have caused worry and stress for her and her family, and each time the recovery has been tough.
“The diagnosis has affected my family in different ways throughout my life. I wasn’t able to have surgery in a local hospital, and my parents have had to take weeks off work to be able to spend time with me after surgery.
“Recovery was hard, and I’ve had to deal with additional complications from the operations.”
Taking Daily Medication
Leanne must now take daily medication to ensure the metallic valve works correctly and avoid any further complications.
“I have to take Warfarin for the rest of my life to lower the risk of blood clots and therefore the risk to my valve.
“Every few weeks I test my blood with an Anti-Coagulation machine to test the rate my blood clots and measure its International Normalised Ratio.
“I send my results to an Anti-Coagulation team to be assessed. They then advise me how much Warfarin I need to take and when I next need to test my blood.”
Even though the condition remains stable, Leanne still has to see her specialist for check-ups.
“As I am fit and well, I only need to go to the hospital for a check-up every two years. I have an ultrasound to scan my heart and valve, an ECG and a consultation with my cardiologist to assess my health.”
Managing the Condition on a Daily Basis
Medication aside, Leanne doesn’t let her heart condition hold her back.
“My condition has a minimal effect on my day-to-day life. I work, socialise and travel. My condition has never majorly restricted me from doing anything.
“It’s only minor things like not lifting or carrying anything too heavy. This can cause aches and pains due to the trauma to my chest from my operations.
Although day-to-day life with Mitral Valve Regurgitation is manageable, it could cause further challenges throughout Leanne’s adult life.
“Having a child would pose a significant risk to my body and my heart, with the added complications of the Warfarin, which can cause birth defects.
“If I have a child I will have to follow a programme of regular checks and extra scans to ensure the risks are kept to a minimum.”
Advice to Others
Living with a condition that affects one of the most important organs in the body can be worrying, and it’s something that could start to take its toll.
“It’s challenging not to let it take over my life. I know I’m healthy now, but the condition will affect me for the rest of my life, and what will happen isn’t certain.
“The biggest worry is more surgery. So far, my specialists are quite confident that it won’t come to it, but you can never know for sure.”
Living with a rare condition can make you feel alone, but realising you’re not the only one can help.
“I recommend reading about other people’s stories; it helps me to realise I’m not alone, and there are many people in the world living with similar things.
“I overcome the worry by keeping myself occupied with my day-to-day life. I am treated the same as everybody else which helps as I don’t feel different, and wouldn’t want to be treated as such. I have supportive family and friends, and that helps greatly too.”