Episode 168 | Susan Smith is fighting cardiac sarcoidosis and possible more.

Susan Smith has cardiac Sarcoidosis. One day she was in spin class, and all of a sudden her life went into a spin. Sarcoidosis has raised its ugly head, and now she is taking things day by day as she works with her medical team to find a solution to what seems to be a worsening problem.

Susan contacted me following the release of the podcast saying she wished she had been more specific with respect to some of her diagnosis. She asked me to pass along the following information: I wish I had made clear that I am being evaluated for autonomic small fiber neuropathy and my symptoms not only include weird sensations in the feet, dry eyes, and body temperature dysregulation but also bloatedness after eating and drinking, cold intolerance in my fingers and toes and sexual dysfunction.

Also, I wish I had explained more about how it was evident to me that I had cardiac sarcoidosis before getting the results of my first PET and my first cardiac MRI. I had had two 30 minute long episodes of ventricular tachycardia, a month apart. The second one came after being loaded up with Amiodarone at the hospital and beginning a daily dosage at home. Amiodarone is the most potent anti-arrhythmia drug available. The second episode of ventricular tachycardia did not result in my ICD firing because the Amiodarone had dampened the v-tach, making the heart beat less fast. The settings on my ICD were for a higher grade v-tach. The ER doctor shocked my heart back into rhythm. I remember it well because he did not sedate me. After the second prolonged v-tach, my primary cardiologist said to me that there must be “Infiltrations” in my heart. He threw out the word “sarcoidosis.” I read about cardiac sarcoidosis and compared my symptoms to those associated with other cardiomyopathies. It seemed to me that it was highly likely that I had cardiac sarcoidosis.

Show notes: Johns Hopkins Sarcoidosis Event: https://aspire.hopkinsmedicine.org/project/49528 FSR helps patients navigate insurance: https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis