Living her life one beat at a time

AN Ardnacrusha heart patient whose life was saved by a double heart bypass, is urging the government to allocate €1.2 million in annual funding to the Irish Heart Foundation.
Pauline O’Shea, (50) recalled the National Stroke and Heart Charity helped her to pick up the pieces after the shocking diagnosis she had the heart of a 70 year-old and a heart function of between 10% and 20% before surgery.
The mother-of-three required emergency life-saving intervention to deal with Spontaneous Coronary Artery Dissection (SCAD) when a tear appeared in the wall of a coronary artery, which supplied blood to her heart.
When her heart function improved to about 35% following medication and intensive rehabilitation work, Ms O’Shea started volunteering for the Irish Heart Foundation in 2018 before she applied for and was appointed as their Patient Advocacy Campaign Manager since September 2022.
Using her marketing and communications experience, she draws on her personal near death experience as a heart failure patient to lobby the HSE and politicians for improved patient services. In addition to this work, she also trains other patients to learn advocacy skills.
“I am now able to go through a door and hold it open for other patients behind me. It feels good that another patient’s life might be a small bit easier because of what I did,” she said.
Urging politicians to sign up sign an online pledge on irishheart.ie/advocacy to ensure €1.2 million in crucial annual funding is made available to the IHF, she believes the government needs to recognise heart failure patients are living with a lifelong and life-limiting disability.
The IHF currently receives just 8.6% of this to fund patient support services nationwide, which it says is inadequate to help the current volume of patients.
Ms O’Shea said patients have to recover and manage their minds and emotions, as well as their bodies – and that’s what the Irish Heart Foundation helps with.
“I went from feelings of loneliness, hopelessness and fear as a lone heart failure patient in the community, to a place of support, connection, opportunity and empowerment,” she said.
“My heart doesn’t function as well as other people’s. It impedes what I do and when and the length of time I can do it. That is a hidden disability, but it is not recognised. I am not entitled to a medical card even though my illness will never go away. I take medication to slow down my heart rate so it will last longer.
“I know a woman in Kerry whose left arm never worked after a stroke. She can’t get a disabled car parking permit because she can’t get a Medical Certificate as only one of her arms is disabled. Her two arms have to be disabled to get a Medical Certificate, can you believe this.”
She warned if the IHF can’t secure additional funding, it will not be able to support its patients and their advocacy work will have to be reduced.
Born in Tralee, Ms O’Shea lived there until she went UCD where she completed an Arts degree and Marketing postgraduate before she moved to the United Kingdom where she worked in different marketing roles for nine years.
In 2015, her family including her husband and two boys moved to Westbury and later to Ardnacrusha in July 2020. Her sons are 21 and 19, and her daughter is 12.
Five days after giving birth to her daughter in University Maternity Hospital, Limerick on the day she brought home her daughter on April 3, 2012, she experienced a tearing chest pain as she was walking down the stairs.
Her body temperature fluctuated between hot and shivery and she also felt nauseous.
“It was like a body tsunami. It was like two hands were pulling my rib cage apart but because my temperature was fluctuating I couldn’t identify what was happening,” she said.
“I sat down in the sitting room. There were waves of heat, cold and nausea. I thought I was going to go to the toilet all over the place. It was like something had taken over me. I quickly found if I made any movement it resurrected, if I stayed still, it abated.
“My husband was minding our baby daughter. He asked me something and I didn’t respond. I felt I couldn’t risk moving to say anything. I was kind of frozen. He noticed there was something wrong. Even if I could physically answer, I couldn’t explain what was wrong with me.”
After a few phone calls, an ambulance was dispatched and paramedics felt she was unwell after a portable ECG in her kitchen. She was taken to University Hospital Limerick, arriving at 11pm where bloods were taken and other treatment that indicated there was something wrong with her heart.
Her mother-in-law, a retired nurse, Mary O’Shea arrived in the hospital who noticed high troponins were elevated illustrating a cardiac issue.
She feels that medics saw her as a 38 year-old who just had a baby and didn’t delve too deeply into her medical condition.
An ED doctor ordered a head and chest CT scan. Having spent 12 hours in the hospital, she claimed a doctor checked her and felt her heart was fine.
While she had a head CT scan, she claimed someone didn’t order the chest CT so she had to spend another night in hospital.
Emotionally distraught and very frustrated, she got a bed in the cardiac ward and had her chest CT and Echo the following day.
At about 3pm on Holy Thursday, a doctor told her he thought she had a virus called Myocarditis, which required extensive rest that should lead to a recovery within six weeks.
She now knows a student doctor questioned in her medical notes if she had a dissected artery.
On Easter Saturday, when she was trying to make up a bottle for her daughter, she experienced a repeat of the tearing chest pain. Any time she moved, the pain resurrected again.
Assuming she had received the correct diagnosis, she opted not to go back into UHL and tried to struggle through it by sitting on the couch motionless all night.
On Easter Sunday, she went up to bed exhausted and tried to engage with her nine and seven year olds sons about their Easter eggs but felt spent.
The following day she couldn’t even tolerate the weight of her newborn baby on her arm.
“It felt like nothing external was bearable. Mary O’Shea came, wasn’t happy with me and called the GP who came to the house and sent me back into UHL because her heart rate wasn’t right,” she said.
“When I went back to UHL, the doctor said get me into Resus straight away. This was the first time I thought ‘am I going to die’. A lot of administration hadn’t been filed after the Easter Bank Holiday weekend so no one could find my files.
“When I told medical staff I was diagnosed with Myocarditis, I was put back out into a cardiology ward. On April 11, a new cardiologist came in and noticed I was very clammy. Another ED doctor said ‘I am so glad you are back in here because there is something wrong but we don’t know what it is’.
“The following day my heart rate escalated suddenly to 240. Everyone crowded into the room. It was panic stations. I could hear Velcro so I thought I would be getting resuscitation pads.
“It was terrifying. I could hear doctors shouting ‘give her this, give her that’. I knew in my heart and soul I was going to die. I was in disbelief. I kept thinking I just had a baby, how could I be about to die.
“I had gone into cardiac arrest. What transpired was I never had Myocarditis. I had a tear in a coronary artery in a condition called SCAD. When I was in pain the part of the torn artery was flapping over the blood flow in my heart causing a heart attack.
“I effectively had three massive heart attacks. The artery wall had doubled back preventing blood flow.”
She acknowledged some excellent medics are providing good care in UHL. When she was experiencing cardiac arrest, the blood flow had stopped going through her heart, her heart was beating faster and faster to make this happen but it wasn’t happening, which prompted resuscitation.
Following emergency resuscitation in UHL, she was rushed via ambulance to the Maher Hospital in Dublin where medics had seen her medical file and suspected coronary artery dissection.
This was confirmed in an angiogram, which resulted in a quick transfer to theatre because the tear was so extensive her coronary artery was 99% blocked. Any time she moved previously the artery wall flapped the wrong pain causing excruciating pain.
Drifting in a out of consciousness, she remembered grabbing the arm of her mother, Sheila Hurley, saying “If I don’t survive, mind the kids and make sure my baby daughter never gets blamed for any of this”.
Her father travelled with her to Dublin, leaving her children with their Dad.
Following double-bypass surgery lasting more than four hours, she was treated in Intensive Care for five days.
“I had a great surgeon who saved my life. He got my blood flowing and my heart working again,” she said.
“Doctors had to take veins out of my legs and put them into my heart, which was a miracle job. I was just 38. I wasn’t a drinker or smoker. The torn artery is not lifestyle-related. It is probably something I am predisposed to through genetics. One side of my family had aneurysms.
“When I woke up, I was told I had the heart of a 70 year-old. Following damage to my heart muscle, my heart function fell as low between 10 and 20%. That was the worst day of my life because this was now my reality. After open heart surgery and a caesarian section, I was physically in bits.
“I didn’t know if I got out of bed to go to the toilet would I drop down dead. After three weeks, medics had to put in a defibrillator to my body.
“Some women experience this during menopause if the artery walls get a bit thinner. The average age for SCAD is 42. It affects 80% of women.”
Returning home, she couldn’t lift her baby for ten weeks, which was “torture”. Her parents had to mind her on rotation because she wasn’t able to do anything physically demanding while her husband worked.
Her public health nurse secured a Home Help for a period. For about 12 months, she struggled physically and mentally had regular daily thoughts about dropping dead.
“When I thought about putting on the kettle, I wondered if I am holding the baby will she hit her head off something if I drop dead on the way? The dropping dead bit haunted my thoughts for almost two years,” she said.
“It almost becomes a logical part of the day you think about this possibility in your plans.
“Life was very lonely, grief, fear and isolation were huge. I was running a business, which I couldn’t do.
“By 4pm, I would not be able to talk because my body was too weak. My husband, who was running his business, would try and come home but sometimes he couldn’t. The strain was enormous physically, emotionally and financially.
“This affects the whole family. If went out and got delayed, my nine year-old would ask me where was I. You don’t want to talk to your children about your anxiety because you know they already have anxiety. Everybody is trying to protect everybody.”
When cardiologist, Professor Declan Sugrue referred Ms O’Shea to the Irish Heart Foundation it improved her quality of life in some many ways.
It allowed her to connect with other women and men who had experienced heart failure.
“The Irish Heart Foundation provided a lifeline for me. I could put in a question to their Facebook page about any issue, avail of the nurse line and various supports. If I am stressed, this will manifest physically on my heart. Studies have shown depression can cause further heart issues,” she said.
“People need help to rebuild their lives. Apart from the IHF, I couldn’t find any of the vital peer support services in my local community.
“The IHF provides a safe sanctuary. There is a lot of humour. We laugh amongst ourselves. There is a great bond between patients which is medicinal.
“Before the IHF, I felt like I was in a rubber dinghy out in the ocean. When I met other patients, it was like being able to see other dinghies. I wasn’t on my own anymore. Counselling was hugely beneficial. I had a lot of work mentally to develop hope in my brain and not be afraid to be hopeful. I had to learn how to live without catastrophising every event in your life.”