display | more...

WomenHeart is The National Coalition for Women with Heart Disease. Their mission is to improve the health and quality of life of women living with or at risk of heart disease through advocacy, community education and peer support. There is a local group that meets once per month at the hospital where I spent much of December 2016 to February 2017.

The contact person and facilitator of the group coincidentally also has Cardiac Sarcoidosis with no coronary artery disease, same as my history. She called today and shared that she had a prior diagnosis of Pulmonary Sarcoidosis before the Cardiac Sarcoidosis, both asymptomatic until mild arrhythmia caused enough concern to have a defibrillator installed, all back in 2006.

I only attended one meeting which was poorly run hence stressful; the speaker arrived late plus the meeting was in the afternoon with no refreshments. I left early because the clock in the meeting room was not changed for DST and I didn't want to hit rush hour traffic on the highway. I was given a gift bag with a red handmade scarf by a sub-group called HeartScarves, who chose the red scarf as a symbol of the lifelines of caring and support that exist among the group. There was also a heart-shaped tin of mints and too many brochures about HeartSisters, HeartChampions; you get the picture.

As I was leaving, the person who handed me the bag said, "Tell other women: this is Sudden Cardiac Death Month." I looked at her and replied, "What?? I thought October was Breast Cancer Awareness Month. Are you trying to scare me off the first time I come here?" I was never so glad to get outside and while walking to my car, laughed when I realized I had an extra hour plus there would be no traffic!

Missed the meeting last week so I'm guessing the facilitator called to check on me. We compared our heart health, eerily similar but enough differences to make us both laugh, easily sharing our symptoms with a stranger. We plan to meet for tea after Thanksgiving. I'm curious what worked for her, what didn't, what doctors recommended, how she copes, etc. She said she's been waiting since 2006 to find ANYONE and she's glad it's me. Funny how lives intersect.


Log in or register to write something here or to contact authors.