Patients & Caregivers

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Onset and Initial Diagnosis

In October 2023, I started experiencing symptoms I initially attributed to malaria or a general infection. These included fever, headache, body pains, and general malaise. Following a diagnosis of both malaria and typhoid, I began treatment. Typically, I recover from malaria within a week, but this time was different. Despite ongoing treatment, my symptoms persisted into late December, with only brief periods of relief.

Development of Cough and Chest Pain 

By the first week of January 2024, I developed a persistent cough. Despite using cough medications and antibiotics prescribed by my doctor, the cough didn’t improve. Concerned, I underwent a chest X-ray to check for pneumonia or any chest infection, but the results came back clear. Shortly after, the cough subsided, but I began experiencing chest pain, which I initially thought was a residual effect of the cough.

Escalation and Cardiologist Referral

In the second week of January 2024, the chest pain worsened, accompanied by palpitations and fever. A visit to the hospital revealed significantly high blood pressure. The attending doctor prescribed a beta blocker for my heart rate and referred me to a cardiologist immediately. The cardiologist ordered tests including an ECG, an echocardiogram, and blood tests (ESR and CRP, blood tests used to assess inflammation in the body) were ordered. The results indicated elevated ESR (presence of inflammation in the body) levels and signs of pericarditis on the ECG and echocardiogram, with a pericardial effusion of about 1.0 cm (moderate sized effusion). The cardiologist described it as acute pericarditis and reassured me it was treatable.

Initial Treatment and Improvement 

I was prescribed a beta blocker for my heart rate, an anti-inflammatory medication that is usually used to treat gout, and medication for pain management. Due to my history of stomach ulcers, non-steroidal anti-inflammatory medication was excluded from my treatment. The cardiologist advised a follow-up in two months. Within 1-2 weeks of starting the medication, my symptoms improved significantly: no more chest pain, palpitations, or fever. However, my blood pressure remained somewhat elevated.

Setback and Recurrence 

In an effort to manage my blood pressure, I started doing cardiovascular exercises, unaware that this could trigger a recurrence of pericarditis. By March 2024, my symptoms had returned, prompting another visit to the cardiologist. This time, I was prescribed non-steroidal anti-inflammatory medication (along with a stomach protector), an anti-inflammatory medication used to treat gout, and a low dose of steroids. Although I started feeling better, the symptoms did not completely resolve.

Further Investigations and Ongoing Symptoms

Despite the medication, I continued to experience intermittent chest pain and tightness. Follow-up appointments included a CT scan (X-rays and computer technology to create detailed cross-sectional images of the body) with contrast and another echocardiogram. The CT scan was clear, and the echocardiogram showed no more effusion. Yet, the symptoms persisted, with good days and bad days, where pain ranged from 0-3 on good days to 3-6 on bad days. I started taking anti-inflammatory supplements, which seemed to help me to some extent.

Impact on Daily Life and Work

Living with pericarditis has significantly affected my daily life and routines. From January until now, I’ve had to miss many outings with friends and family. I work a hybrid job, going to the office three times a week and working from home on other days. The condition has made physical office days particularly challenging, and I’ve had to decline many projects from clients due to flare-ups. I’ve also taken numerous sick leaves to rest and recover.

Emotional and Mental Challenges 

Emotionally and mentally, this journey has been tough. Initially, I wasn’t too worried because the cardiologist reassured me that acute pericarditis typically resolves in 1-3 weeks with proper medication. However, the recurring nature of my condition has been disheartening. Despite adhering to an anti-inflammatory diet, taking supplements, and following medical advice, flare-ups still occur, making me feel like I’m constantly battling an invisible enemy.

Coping Mechanisms 

To cope emotionally, I rely on my faith and community. Listening to spiritual teachings and sermons helps me prevent depression and keep hope alive. Watching movies also provides distraction and relaxation. Additionally, I engage with support groups like the Pericarditis Alliance and Pericarditis Global on Facebook, where I find comfort in shared experiences and advice. However, visiting the pericarditis ward at the hospital can be isolating, as most patients are older and dealing with other conditions like hypertension and heart disease.

Support from Family, Friends, and Communities 

The support from family, friends, and online communities has been invaluable. They’ve provided emotional support and practical advice. Specific resources like the Pericarditis Alliance and Global Pericarditis Support groups have been instrumental in helping me navigate this condition.

Advice for Others

As a newly diagnosed patient, I benefited from listening to my doctors and doing my own research. I found that joining support groups was immensely helpful. Also, it was very helpful to take things slowly and avoid overexertion. Gradually tapering off steroids, under medical supervision, helped me to avoid severe flare-ups.

Challenges 

One major challenge is that pericarditis is often a one-time (acute) illness that resolves after proper treatment. While many do experience acute pericarditis that clears up in a few weeks, others, like me, face recurrent pericarditis requiring long-term treatment. This is less common and can be misdiagnosed.

Another challenge is the availability of advanced treatments, like biologics. Biologics are not accessible to me in Nigeria or Africa. This lack of availability highlights the need for more research and accessibility to advanced treatments in developing regions.

Hope and Future Outlook 

Living with pericarditis has made me more conscious of my diet and lifestyle. I’ve become diligent about eating anti-inflammatory foods and avoiding activities that might trigger a flare-up. Although it has impacted my physical activities and social life, I remain hopeful. Seeing others manage and eventually overcome recurrent pericarditis inspires me to stay positive.

I’m hopeful that biologics will become available here in Nigeria if I need them in the future. This condition won’t define my life, and I remain committed to managing it effectively while looking forward to better days ahead.