Patients & Caregivers
Real Life StoriesMeet Andy
My name is Andy, and I am from the county of Lancashire in Northern England. Over the past four years, I’ve retrained as a psychotherapist and now support individuals with their mental health. I run my own therapy practice, work with a local men’s charity, and provide telephone counseling for the National Health Service (NHS.) As someone who was once a reluctant client, I’m dedicated to breaking down the stigma and barriers surrounding mental health. In my free time, I enjoy walking my dog and spending quality time with my young family. Although I used to stay active with football, golf, cricket, and squash, walking now gives me the chance to exercise and appreciate the tranquility of nature.
Diagnosis and Symptoms
I was initially diagnosed with pericarditis at the end of February 2018 after several trips to the local ‘walk-in’, an overnight stay in the hospital after collapsing and further trips to accident and emergency (A&E). The main symptom was excruciating chest pain that I’d never experienced before and thought I was having a heart attack. It was really scary at the start. I found that the persistent stabbing chest pain worsened with exertion, and any attempt to engage in even the simplest tasks, like light household chores, would increase my shortness of breath, especially if done for an extended period or with any significant effort.
However, my EKG was normal, but an echocardiogram confirmed pericarditis, and I was prescribed a medication often used to treat gout and a nonsteroidal anti-inflammatory medication (NSAID) for ten days. Despite some gastrointestinal side effects, this seemed to work, and the pain settled down, so I tried to get back to normal and ‘push through’. This was a mistake. I think I rushed things; the pain became even more excruciating a couple of months later and I ended up back off work and on medication again. The cardiologist didn’t seem overly concerned but the general practitioner (GP) was supportive, comparing the condition to glandular fever in severity and recovery time. A cardiac MRI showed that I originally had myopericarditis and that this developed into chronic or recurrent pericarditis. The classic symptoms of chest pain, shortness of breath, feeling light-headed and fatigued are still with me after six years. I have had to learn to limit the forms of activity, exertion or exercise that I undertake. My daily life and routines are very different now.
Treatment Journey
When I was first diagnosed with pericarditis, I was disheartened by the dismissive attitude of some healthcare professionals. It seemed like pericarditis wasn’t taken seriously enough, and that the advice I received didn’t aid my recovery. I wasn’t advised of the critical need for proper rest from the beginning, which might have prevented my condition from becoming chronic.
After facing challenges at other hospitals, I was referred to a different hospital by my primary care physician, who assured me it was the best place for my treatment. I’ve been impressed with the care and support I’ve received there from day one. If you’re in the north of England and dealing with a heart condition, I highly recommend Liverpool Heart and Chest Hospital.
Since 2018, I’ve been on a regimen including medication that lowers inflammation which is also used to treat gout, NSAID, nerve pain medication and a gut protectant. Although I’m managing my pericarditis better and have been able to reduce my medication over the past year, I still rely on nerve pain medication for relief during flare-ups, despite it causing stomach cramps. While I haven’t fully ‘cured’ my condition and have had to adjust to changes in my physical health, I’m now in a positive place both physically and emotionally. I only see my cardiologist for an annual check-up and feel that I’m managing my condition well.
Emotional Impact
When I was first diagnosed six years ago, I felt overwhelmed by fear and confusion. I didn’t understand what was happening to my body, and everything seemed out of control. The pain was intense, but I tried to push through and continue with my daily life—I felt like I didn’t have time to be sick.
In the eighteen months following my diagnosis, I had to take extended time off work as a teacher on several occasions, eventually leading to me losing my job and taking ill-health retirement (taking pension early due to poor health) in 2019. Losing my job, along with my income and sense of self-worth, had a profound impact on my quality of life and led to significant changes. At just over forty, I was no longer working and had to find ways to manage my condition while still supporting my family.
These past few years have been incredibly challenging. Living with a health condition can feel isolating and lonely, and it’s often difficult to discuss with family, friends, or loved ones. For the first couple of years, I felt completely lost and even reached a point where I struggled with suicidal thoughts. Fortunately, I reached out for help and began seeing a local counselor. Counseling has been a lifeline, helping me navigate those dark times.
Opening up about my feelings was not easy, especially given my working-class upbringing in the 1970s and 80s, which didn’t encourage emotional expression. Confronting the emotional impact of my condition has been a challenge, which is why I’m now so passionate about addressing both the psychological and physical effects of pericarditis.
Support and Community
The Facebook support groups have been incredible sources of support during tough times. Sharing experiences with others who understand what I’m going through has been a lifeline. While I’ve learned to be more open about my health with family and friends, this openness has inevitably affected those relationships. Although my loved ones are supportive, having additional support from people who aren’t emotionally involved has been extremely helpful. That’s why I’m so grateful for these online groups—they really understand!
Advice and Insights
If you’re new to dealing with pericarditis, my best advice is to prioritize rest and recovery. Pay close attention to your body to ensure a full healing process. I made the mistake of pushing myself too hard, which led to worsening outcomes. It’s also crucial to limit physical activity and exertion while managing pericarditis. This aspect is often overlooked, but it’s incredibly important.
Hope and Future Outlook
I aim to maintain stability in managing my pericarditis. I’ve learned to recognize the signs of a flare-up and work with them rather than resist, which has been a significant shift from my previous approach. After years of seeking stability, I now feel I’ve achieved it, although challenges remain. I still get frustrated when familiar symptoms return, but I’ve come to understand and listen to my body much better. Living with a chronic condition is tough, and I may never fully accept it, but I’m in a good place overall. While I’ve had to let go of my football, golf, and cricket days, I’ve found joy in walking my dog in the countryside.
With a deeper understanding of pericarditis and how to manage it, I’m hopeful I can continue to stay positive.
I’m sharing my story to raise awareness about the difficulties of living with pericarditis. There’s a lack of information about this condition and increasing awareness could really help others who are suffering. If my story can assist even one person, it will have been worthwhile.
Glossary of Terms:
EKG – A test that measures the heart’s electrical activity to assess heart rhythm and function
Echo – An ultrasound that uses sound waves to create images of the heart, helping to evaluate its structure and detect abnormalities
Cardiac MRI – A medical imaging test that uses magnetic fields and radio waves to create detailed pictures of the heart’s structure and function, helping diagnose heart conditions such as inflammation, damage, or abnormal growths
If you or someone you know is struggling with thoughts of suicide, help is available. In the U.S., call or text the 988 Suicide & Crisis Lifeline. For support in other countries, visit [iasp.info](https://www.iasp.info/crisis-centres-helplines/) or [befrienders.org](https://www.befrienders.org/) to find local resources.