“I was told at the time of my diagnosis not to have any more children, I was also told you might get better or you might not, you might need a heart transplant, you might get to a certain level and not get any better or you might continue to recover. That was a lot to get your head around particularly as a brand-new mum to twins.,” Lizzy Honan
After ten years of trying to have a family in November 2016 Lizzy Honan’s dreams finally came true when her new-born baby twins Tilly and Teddy were placed in her arms. Sadly, however her happiness was short lived as just a few weeks later she was and fighting for her life in the Coronary Care Unit in the Mater Hospital in Dublin, having been diagnosed with peripartum cardiomyopathy (PCM). She was just 39.
PCM is a very rare form of heart failure that affects women in the late stages of pregnancy or in the first few months after the baby is born. In the most serious cases it can lead to the need for a heart transplant or even death.
According to Cardiomyopathy UK, “PCM is rare. Figures vary, but it is thought to affect around 1 in 5,000 to 1 in 10,000 women or 1 in every 2000 women who give birth. Although it can affect women at any age, it seems to be more common in those over 30.”
“ I was told at the time of my diagnosis not to have any more children, I was also told you might get better or you might not, you might need a heart transplant,"
Because PCM is so rare and the symptoms such as swollen feet and exhaustion can mimic those of late pregnancy it is difficult to diagnose, and it took a number of weeks of GP visits and public health nurse checks before Lizzy was finally diagnosed.
Before her diagnosis Lizzy was told she had a chest infection and her exhaustion was put down to simply being the mother of new-born twins. At one stage her symptoms were put down to post-natal depression .
However, Lizzy knew something was seriously wrong. She couldn’t lie flat at night as she felt like she was drowning. She was exhausted, had chest pain and her feet were very swollen despite having already had the babies. Despite feeling at times that nobody was listening to her she persevered and was finally admitted to hospital where a junior doctor suggested a cardiology review. It was then that PCM was finally diagnosed.
" That was a lot to get your head around particularly as a brand-new mum to twins,”
Her babies were born in early November and Lizzy was admitted to the Mater in early December where she was to stay until Christmas Eve. She had a battery of tests and was started on medication which meant she had to stop breastfeeding. She was also fitted with an ICD.
Lizzy paid huge tribute to all the medical and healthcare staff that cared for her during her hospital stay and who continue to care for her today.
A year after her experience Lizzy said she was beginning to feel more like her old self but was “living with a new normal.”
Today, three years later Lizzy is back at work, but she is acutely aware that she needs to conserve her energy which is not easy as the mother of three-year-old twins.
Lizzy said she wanted to raise awareness that heart failure can happen to young women.
" Women need to trust that they know their own bodies. You might not know what it is, but you will know if something is wrong,”
She also wanted women to start putting themselves first, not to put off seeking help for a physical complaint and to be persistent when they feel something is wrong.
“Women are terrible for saying I don’t feel very well. They say, “ah sure I will be grand I have about 14 million things to do before next Saturday,” and they do let things go that little bit too long. Other times they know something is wrong and it can often be very difficult to get somebody to listen. Women need to trust that they know their own bodies. You might not know what it is, but you will know if something is wrong,” she said.
Despite missing sausages and bacon sandwiches, Lizzy said that she feels well today and is getting used to her new normal.
“My life would have changed drastically after I had the babies one way or the other,” she said.
“It is always there at the back of your mind. There is always that thought that it can come back or that the medication might stop working, you wonder is that a random chest pain or something you need to get seen to right away. But at the same time, three years later I am here, I am upright, I am working again, and I have two small children. If I didn’t do anything ever again and wrapped myself in cotton wool all of this work would have been a waste of time. I wouldn’t still be living a life and I am living a great life now,” Lizzy smiled.