Thanks to Readers, I Am Making My Heart a Priority

Thanks to Readers, I Am Making My Heart a Priority
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When I was diagnosed with sarcoidosis, my physicians drilled into me the importance of annual lung and eye exams. And I have followed through every year without fail. But numerous readers have made me aware of another important area of concern: the heart. February is American Heart Month and a reminder to make an evaluation for cardiac sarcoidosis a priority as my readers have urged.

A silent threat

My sarcoidosis was confirmed by bronchoscopy in 2003. But 2016 was the first time I underwent any kind of testing for cardiac sarcoidosis, and that was a fluke. I had been diagnosed with postural orthostatic tachycardia syndrome, and a potential aortic valve mass was spotted during an exercise stress echocardiogram. An MRI, a second echocardiogram, and an EKG followed and no evidence of cardiac sarcoidosis was found.

I didn’t give it another thought until last year when readers of my column shared stories of the devastating sudden loss of loved ones from cardiac sarcoidosis. Their loved ones’ cardiac sarcoidosis went undiagnosed until after their deaths, which is often the case. A 2016 study found cardiac involvement to be the most common cause of sarcoidosis-related death in those examined postmortem.

Not as rare as believed

Cardiac sarcoidosis cases doubled between 2005 and 2011, according to a study that led researchers to conclude the disease may not be as rare as once thought. Cardiac sarcoidosis is only diagnosed in about 5 percent of those with sarcoidosis. But it is detected in up to 25 percent of those with systemic sarcoidosis upon autopsy or by using advancing imaging techniques.

That indicates that the rate of occurrence is far higher than previously reported. A study published in the Cardiology Journal in 2018 estimated that 3.7 percent to 54.9 percent of those with systemic sarcoidosis are affected by the condition.

Beginning the conversation

Cardiac sarcoidosis goes largely undiagnosed because there are no clear diagnostic guidelines. The Cleveland Clinic called it one of four types of sarcoidosis to watch and said the long-term prognosis is good if it is detected early.

My conversation with physicians about cardiac sarcoidosis ended when no evidence was detected in 2016. I never asked whether additional testing was recommended, how often I should be evaluated, or how to minimize my risk. But thanks to readers, those are questions I will be addressing when I return to the Cleveland Clinic in a couple of months.

If you haven’t already done so, I strongly urge you to discuss cardiac sarcoidosis with your physicians.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

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6 comments

  1. body says:

    You can certainly see your expertise in the article you write.
    The world hopes for even more passionate writers such as you
    who are not afraid to mention how they believe. At all times follow
    your heart.

  2. Anthony Petterson says:

    Thank you for writing this. I am a 43 year old man, living with systemic (diag. 2013) and cardiac sarcoidosis (diag. 2016).
    I had been an athlete most of my life. I played college basketball and then found myself competing in triathlons in my mid 30’s to present day. After my first Ironman in 2015, I had a skipped beat that I was feeling. I went to see a EP cardiologist and low and behold after tests and imaging, they found that my left ventricle exterior wall had been overtaken by scar tissue and was not pumping effectively. With no surgery options, I had to get a defibrillator implant (s-icd). It’s been over 3 years now and I haven’t had any cardiac events (although I do have the skipped beats on a regular basis). I am back to normal life and have ran a couple of half marathons since my recovery. I feel like I’m in the best shape of my life right now. I wake up everyday thankful to be alive, because I know, although I do have a safety net with my ICD….if it’s my time, I am a happy man. This sarcoidosis HS humbled me and has made me realize that what is important are the relationships with the people you love and that are close to you. Because in the end, that’s all that matters. Until then, we should all try to approach everything with a kind heart, an optimistic attitude, and a willingness to love unconditionally.
    Again, I appreciate you writing about this, and how important it is to have those questions about cardiac sarcoidosis answered.
    Much love.

    Anthony

    • Athena Merritt says:

      I’m really happy to hear that you were correctly diagnosed and treated and continue to compete and enjoy life. Your positive spirit is truly inspiring. Thank you for sharing your sarcoidosis journey and spreading your optimism.

  3. Rich Jesson says:

    I was diagnosed with Sarcoidosis in 2014 and thought I had recovered, but 2 years ago I suffered a complete heart block and was fitted with a pacemaker. The doctors said that it was caused by Sarcoidosis. 2 months later I sufferd a cardiac arrest, I had 16 mins CPR from my wife before help arrived in the form of an ambulance and a helocoptor with doctors. They took over and I had 4 shocks on my livingroom floor and 3 more (7 in total) while in the helocoptor on my way into intensive care. I’m told I was very very lucky to have survived. I have suffered some ischemic damage to my heart and brain but not too bad.

    • Athena Merritt says:

      Sarcoidosis is horrible. A lot more research needs to be focused on cardiac sarcoidosis to help prevent health crises such as yours and to save lives. You are truly blessed to have emerged from this. I hope and pray the worst is behind you. Thank you for taking the time to write in and share your story, which I hope will serve as a wake up call for all of us to speak to our physicians about cardiac sarcoidosis and our risks.

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