Both sides of the fence: a cardiology journey

This Patient Perspective has been written by Sarah Ellison, a patient and nurse who is living with congenital heart disease. It refers to ‘Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism’ by I. Na et al., https://doi.org/10.1093/eurjcn/zvab117. I read with interest the article on ‘Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism’,1. Although I can no longer fit within the ‘young’ bracket at aged 51, it did make me reflect on my own journey to date, living with congenital heart disease. The dimensions of rejection, engulfment, acceptance, and enrichment that patients with congenital heart disease experience, as discussed in the article1are particularly interesting. I had a patent ductus arteriosus (PDA) ligated at 18 months in 1972. After the thoracotomy was completed, my parents were told that I would need ‘open heart surgery’, at a later date as a possible ‘hole’ had been discovered during the operation. Remember this was before echocardiograms existed and PDA closures were classed as a big surgical procedure resulting in ITU stay for recovery. Thankfully open heart surgery was never needed. Throughout childhood, other than getting regular chest infections, I had no time off sick from school; I had all but forgotten about my health condition However, during and after pregnancy cardiac issues emerged, with occasional unexplained collapses and feeling really breathless and poorly, despite numerous different speciality appointments and investigations. Like a ‘Stacey matrix model’, this lack of a person-centred holistic approach resulted in complex chaos and care delivered in silos. Not fitting into a neat ‘simple, consultation’box, I almost felt to blame for the situation. The only consistent message was to ensure I had no more children. As a woman and a cardiac nurse, I felt I was being perceived as making a fuss. By my 30 s I was having episodes of significant bradycardia and pre-syncopal episodes. But, trying to capture a cardiac rhythm proved hugely difficult and typically nothing showed up on the Holter monitors. At that time my condition had an impact on every day of my life of myself and my family. I tried to work out the problems for myself and find my own solution. We bought our own handheld heart monitor and were able to capture the significant bradycardic episodes and atrial tachyarrhythmias. Electrophysiology (EP) study and ablation proved unsuccessful. The frustration was huge. I had needed time off work and for no fix. What was even worse was the dismissive attitude of the cardiologist. This was my lowest point. After much discussion, a permanent dual-chamber pacemaker was inserted. Readings clearly demonstrating frequent atrial pacing along with runs of atrial tachyarrhythmia made me feel vindicated, as my family and I had almost felt gaslighted at times. I learnt so much about being on the receiving end as a patient. Experiencing the routine procedure of pacemaker implant or EP studies as a patient was terrifying. The simple act of the nurse holding my hand throughout my pacemaker implant was hugely reassuring and I will forever be grateful to her. Despite the improvement and reduction of arrhythmias, I remained breathless on exertion, although, during clinic appointments, I always looked fine. I was fixed and repaired and my echo was not showing any significant problems, just some valve regurgitation At this point, I became reluctant to attend any medical appointments. If the cardiologists said all was fine, then I would carry on as normal, exercising and pushing myself the same as everyone else. This was hugely challenging for all those close to me, to see me on self-destruct mode. This is identified in the article1 as suboptimal adherence. I had lost my faith in the medical profession and rejected my health condition. Then things came to a head when I had a transient ischaemic attack (TIA). I knew something was wrong but I initially refused to go to the hospital. I was unwilling to put myself through more tests and the subsequent humiliation That year was horrendous. I had a cholecystectomy and a cardiopulmonary exercise test (CPET) prior to surgery. After the operation, I had a chest infection, followed by the TIA months later and then chest sepsis resulting in hospital admission. The TIA had really frightened me. I had no risk factors other than atrial arrhythmias. I wanted to understand why it had happened and also what the CPET results were, as I was still breathless on exertion. The results of my CPET showed significant cardiac deterioration compared with the last test. A follow-up appointment was made with my adult congenital heart disease (ACHD) cardiologist alongside further investigations including a referral to the exercise physiology team. They were the first clinical staff to see what I had been trying to explain to everyone else for years. My ACHD cardiologist observed one of the sessions. It was tough and emotional, but at last, I felt believed. The exercise physiology team gave me insight into why I find myself limited with certain activities and tailored an exercise programme to better manage, and this along with changes to cardiac medications has helped. I have accepted, albeit begrudgingly, that this is as good as I will get. I feel in a unique position with a cardiac nurse background and my lived experience as a patient seeing both sides of the fence. I was discharged from the healthcare system as a child because my heart condition was ‘fixed’. We know now that this is often not the case, and there is a need for lifelong follow-up care. A study using a large data set from the UK biobank2 found that ACHD patients, even with lower complexity ACHD had significantly more cardiovascular events compared with an age-matched non-ACHD population. This is certainly reflected in my own experience, with sick sinus syndrome, pacemaker insertion, subsequent TIA, and poor CPET, despite no other cardiovascular disease risk factors such as smoking, obesity, or diabetes, and so on. The concept of ageing in the ACHD population and accelerated cardiovascular risks has been discussed by Moons and Marelli3 recognizing this growing population. Whilst we absolutely need to ensure robust care for children, younger people, and transition services, we also need to remember there is an entire population with ACHD like me and older that are running into significant health problems. Cardiologists and other healthcare professionals need to acknowledge this. I have been very lucky that I now have an excellent general practitioner and a supportive cardiology team. The original article1 highlights enrichment as being a dimension of positive life changes and personal growth. This is where I am now. I am doing a PhD with Liverpool John Moores University researching ACHD in primary care. I am trying to use my own experiences as both a nurse and a patient to have a positive impact on future care for patients with congenital heart disease. The key learning for both myself as a nurse and, I hope, other healthcare professionals is to ensure we listen to our patients and families. ACHD is still relatively new and we are still learning about its complexities especially in the older age groups. Understanding that those with simple and repaired ACHD remain at greater risk of future cardiovascular problems is really important even if we do not fit into neat boxes. A passing comment can stay with a patient forever, for good and bad, and compassion and understanding can be a huge help. The day I found acceptance was the day I felt heard and had staff acknowledging that there were physical reasons for how I felt, even if they could not fix things. A team approach was hugely important as is recognizing the impact of being heard and not attributing everything to anxiety but recognizing that living with a long-term condition is challenging. Remember to ask your patients a key question: ‘What is important to you’?