1,825 Days

The title of this post,  1,825  Days, refers to how many times the sun has come up since I had a heart attack out of the blue five years ago. In those early weeks after, I remember being afraid to go to sleep at night, for fear I wouldn't wake up. I thought it might be good to remind myself of where I've been and where I am now. Here goes.

Day 1: March 30, 2009. rushed to ER w/ classic heart attack symptoms, discovered the next day to have been caused by a spontaneous coronary artery dissection (SCAD). Six stents later plus a week in the hospital, sent home and told they're rare, nothing prevents or causes them, no way to know if I'll have another one.

My wonderful husband, Paul, live-blogged my heart attack and subsequent week in the hospital. I started blogging my experience, first in a private journal, then I created this public blog.

Day 14: April 13, 2009. found some SCAD survivors in an online community called WomenHeart, hosted on Inspire.com's site. Joined Inspire, started talking with other survivors.

Day 36: May, 2009. Started cardiac rehab.

Day 76, June, 2009. Not even three months after heart attack, volunteered at my first health fair. Health fair was hosted at the gym where I did my rehab and a local WomenHeart Champion (volunteer), Carol, had a table. She and I struck up a conversation.

The other lady who was supposed to have been staffing the table with her had a family emergency and couldn't make it, so at Carol's invitation, I sat down and started talking with the women who walked by. Carol encouraged me to apply to WomenHeart's Science & Leadership Symposium, which is in October every year at Mayo Clinic in Rochester, MN. I did so, and was accepted.

Day 124, July 31, 2009. Graduated from cardiac rehab and only missed one out of 36 sessions.

Day 137, August 13, 2009. Published heart disease related fanzine (e.g., contributions all by sf fans),distributed over 200 print copies at conventions around the US,and created a free online edition.

Day 178: Sept. 23, 2009. I made my "All the SCAD ladies put your hands up" post on theWomenHeart messageboard on Inspire.

That discussion thread put a large number of the SCAD survivors on the messageboard all together in a single message thread.

Day 182: Sept. 27, 2009. Did the Triangle-area American Heart Association Heart Walk with a friend and UNC's Cardiac Rehab team, raised over $250 for the AHA.

Day 194: October 9, 2009. Attended WomenHeart Science & Leadership Symposium at Mayo Clinic in Rochester, MN. After we complete the training, which we don't pay for, we are requested to pay it back in the form of at least 24 hours of community service over the course of the next year.

I came home and started assisting other local Champions with area support groups. I also made a Yahoogroup for the Class of 2009 WomenHeart Champions. Before Facebook got so popular, we used this email list to keep in touch with each other, share news, ask advice, that sort of thing.

                   

Day 243: November, 2009. Dr. Hayes contacted the SCAD survivor who approached her the previous month at the Symposium and agreed to do a small SCAD study. I was asked to help reach out to the women on the WomenHeart messageboard on Inspire. We split the list of known SCAD patients, with me contacting the idiopathic/no known cause ones, and the other person contacting the post-partum ones.

As well as encouraging other women to apply to the study, I had to round up my own records and send them in.

Eventually I was put in charge of the Chapel Hill WomenHeart support network, providing in-person support and education for women with heart disease.

I hosted monthly meetings and attended local health fairs of all sizes, from events in small neighborhood churches all the way up to the NC Governor's Conference on Women, at the Charlotte Convention Center.

Day 313: February, 2010. My first published piece on heart disease and women was an open letter to Carolina Woman magazine.

Day 320: February, 2010. My first TV interview, on local station WRAL, about women's heart disease.

Day 365: March 30, 2010. My first heart attack and SCAD anniversary. I'd been warned by other women that the one-year anniversary can be rough, so even though my husband was out of town visiting his gravely ill mother, I invited a couple of close friends over to mark the day with me. I went from laughing and thrilled to be alive one minute, to crying the next; it was quite the roller coaster.

Day 445: Sept. 27, 2010. Did the AHA Heart Walk again with my friend Christine.

Day 458: Oct. 10, 2010. Competed in, and finished, the Ramblin' Rose Triathlon, the one I'd started training for in 2009 when I got derailed by my heart attack and SCAD.

Day 553: Feb. 2, 2011. Fellow SCAD survivor Stacey created a website for SCAD. As far as I know, this was the first survivor-created website to focus solely on SCAD.

Day 578: Feb. 27, 2011. My second published piece, this one about encouraging people with health concerns to wear some form of medical ID. 

Day 730: March 30, 2011. My second heart attack and SCAD anniversary was a happier occasion; my husband and I and a few friends went out for a lovely dinner and dessert.

Dr. Hayes eventually received 50 percent more study participants than she had slots for. We didn't hear anything for a long time, then got news that the results of the pilot study would be coming out in the September 2011 issue of the journal Mayo Clinic Proceedings.

Day 869: August 17, 2011. Mayo Clinic announced two new SCAD studies, thanks to the results of the initial pilot study.

Ron Winslow, longtime health reporter for the Wall Street Journal, interviewed several of us, and the story came out over Labor Day weekend. It's called When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.

Then we found out that Mayo's annual social media summit wanted to have us come give a keynote address at the summit in mid-October, 2011. 

Some of us had been hoping to get a separate SCAD area on the Inspire site, as it seemed like a lot of the SCAD messages tended to get lost in among the regular women's heart disease discussions. That process was taking a long time, and it wasn't certain that it would ever happen.

Day 871: Aug. 19, 2011. I traveled to Charlottesville, VA to be interviewed for Mayo Clinic's Medical Edge series.

Day 899: September 27, 2011. I started a Facebook group for SCAD survivors.

 

I originally intended it to just be a stopgap while things got going on the Inspire site. At first there were only 4-5 of us and I was the sole admin. Slowly, the FB group took on a life of its own, and now boasts over 500 members.

Day 917 (approx.): Mid-Oct., 2011. Inspire, the site that hosts the WomenHeart community where a lot of the SCAD survivors first found each other, put together a PDF report called "SCAD Ladies Stand Up: Stories of Patient Empowerment." 

Day 923: Oct., 2011: While at the week-long social media summit, I got notification that I was a co-recipient of the 2012 Woman's Day Red Dress Award, honoring people who are making a big difference in the fight against heart disease in women. 

Day 930: Oct. 27, 2011. Participated in my first chat on Twitter, aka a tweet-chat, on the topic of patient-initiated research. 

Day 965: Nov. 30, 2011. Co-hosted WomenHeart's first patient-run webinar on a scientific topic (SCAD, of course). No link because the webinar is for WH Champions only.

Day 1,051: Feb. 15, 2012. Dr. Hayes introducing us at the 2012 Red Dress Awards, and the acceptance speeches.

Day 1,065: Feb. 29, 2012. Honored to be a guest blogger at Carolyn Thomas's Heart Sisters blog on Rare Disease Day 2012.

Day 1,084: March 19, 2012. Inspire partnered with Stanford Medical School to do a blog called "Scope," and I was invited to write the first post for it, called "Dr. Google: Threat or Menace?" 

Day 1,095: March 30, 2012. My third heart attack and SCAD anniversary was a low-key event with just my husband and me having a nice meal out. My thoughts on the day were on how far we still have to go in raising awareness of heart disease in women.

Day 1,131: May, 2012. Thanks to the efforts of new nonprofit SCAD Research, Inc., founded by a gentleman named Bob, whose wife died from a SCAD in late 2010, and three Chicago-area SCAD survivors (Meghan, Cheryl and Deb), the first-ever SCAD Walk for Research, and SCAD survivors reunion, washeld in Naperville, IL. 

I almost didn't make it thanks to United canceling my flight, but 18 hours and three airports later, I staggered in around midnight. Cheryl and Deb had both kindly waited up for me and gave me my walk packet and goodies. Look at this awesome group of survivors.

At the walk and other events, including a lunch and learn featuring an update on the research presented by Dr. Hayes and Dr. Tweet, I felt a real connection to two particular ladies: Nancy and Ellen. Before my flights got so screwed up, Ellen was going to be picking me up from the airport, but that didn't work out.

After the walk, I realized that at the rate the FB page was growing, we needed more admins for it, and it would be helpful to have someone on the other side of the country as an admin who could approve requests while those of us on the East Coast had already gone to sleep. Thus, with their approval, I added Nancy (from MD) and Ellen (from CA) to the admin team for the FB group.

Day 1,240 (approx.): August, 2012. I became more and more stressed, and in late August made the decision to step away completely from all of my volunteer work. I left the SCAD FB group in the admins' capable hands, and turned my focus inward, to pay attention to my own health needs.

Day 1,444: March 13, 2013. Stanford and Inspire have compiled a year's worth of Scope columns in a report called "Experts by Experience: A Compilation of Patients' Stories."

Day 1,460: March 30, 2013. Anniversary number four featured neither tears nor celebrations, just reflection on the journey and wondering what the future holds. 

Day 1,825: March 30, 2013. Anniversary number five. Paul and I went out to one of our favorite restaurants, and I have been wearing the shirt that I bought myself as a present.

I could tell you that I hardly recognize that woman who came home from the hospital 1,818 days ago--shell-shocked, too scared to leave the house, keeping her cell phone by her side at all times, freaking out and crying about every little weird twinge of pain anywhere in the chest area... but that's not true.

She's still there inside the woman I am today, and I hear echoes of her in many new survivors' stories. I say to them what I say to myself: you are not defined by your disease. You are so much more. Be kind to yourself, find the support you need, and go out there and live.