The impact of Recurrent Idiopathic Pericarditis – Patient Experience 2

I was a busy Deputy Head, with a family and working approx 60 hours a week when out of the blue, I was diagnosed with Acute Pericarditis in November 2014. This led to a diagnosis of Chronic Pericarditis 15 months later along with two bouts of Myopericarditis. I’ve had many blood and imaging tests but finding a cardiologist to listen to me and put all the symptoms (chest pain, tachycardia, shortness of breath, high blood pressure and intolerance to exertion) and test results (MRI, echo, angio bloods) together has proven very difficult and frustrating. I’ve even been disbelieved and belittled by two consultants. I’m now on my 5th cardiologist and am finding that I still don’t meet the criteria for cardiac rehab. To complicate things further, there is very little information for Drs and patients about the condition(s).

The impact on the physical, emotional, psychological and social aspects of my life and those of my family and friends cannot be underestimated. My wonderful husband has been called out of work many times to take me to hospital and I can’t help but feel guilty every time it happens – my wardrobe contains a bag packed for hospital. Even the intimate side of things (that no-one ever speaks about) is impacted severely. I can’t do domestic tasks so my husband and children have to do more than their fair share, as well as care for me on top of their work and school/uni work. I have to use a wheelchair outside as I can’t walk more than a few metres without symptoms kicking in, therefore I have a blue badge and our choice of holidays is limited to places near a hospital (for when I am in a bad flare) and places that are accessible. Financially, I had to take ill-health retirement from the career I loved at age 48 and resort to sedentary pastimes, which can be difficult with the side effects of some of my 17 medications. With the support of a counsellor, I have had to navigate so many different stressful processes, including Occ Health, Absence Meetings, Blue Badge, ill-health retirement, PIP applications and Mortgage Insurance. Each one brings its own pressures and burdens of proof, right at the time when I need help and rest.

Many sleepless nights have occurred. The thought of not being believed, possibly needing further painful/risky procedures, and not being able to afford to stay in our home, not having the required ‘evidence’ to back up my claims added insurmountable stress, which at times resulted in emotional breakdowns. The worst thought is that I might not live if I deteriorated very suddenly and couldn’t be saved – I was frightened for my husband, boys and parents. That fear still persists and I have to monitor myself very carefully. The condition and the medication has makes me extremely vulnerable to infection – I have been hospitalised quite a few times for serious illness (including meningitis and myocarditis).

I have found friends where I never knew I had them and am still structuring my new life around my needs and interests. I have developed systems for the inevitable paperwork that comes my way and I am now blessed with the time to see, hear and smell the wonderful things in nature and appreciate the time spent with others.

Yes, my symptoms remain and I get very frustrated with other issues, like fatigue, joint pain, Drs who have never heard of the condition and treat it inappropriately, and medical appointments that ‘go nowhere’, but I find I can use my skills and knowledge to help others in many ways and finally I feel like there is value to my life after all.

©️. 2020. Patient D.