Sarah Michaelis-Heidman
We are now Thryv.
LQT Therapeutics Inc. has changed its name to Thryv Therapeutics Inc.
Sarah Michaelis-Heidman is a 25-year old from Barrie, Ontario, who was diagnosed with Long QT Syndrome in 2019. A three-time cardiac arrest survivor, Sarah has an implantable cardioverter-defibrillator (ICD) to correct her life-threatening cardiac arrhythmias.
Sarah regularly chronicles her health and its emotional impacts on her and her family through Instagram.
For this patient journey profile, Sarah recently took the time to share her story of living with Long QT Syndrome.
When were you diagnosed with Long QT Syndrome, and how did your diagnosis come about?
Sarah: I’ve had chronic cardiac issues, and when I had a third cardiac ablation for inappropriate sinus tachycardia, it led to bradycardia and the treatment called for the implantation of a dual chamber pacemaker.
While in pre-op for that routine procedure to install the pacemaker on December 17, 2019, I endured three cardiac arrests. After being discharged, my cardiologist contacted a genetic counselor, and together we decided to test for Long QT Syndrome. My diagnosis was received later in December.
I have other cardiac issues; my resting heart rate was always above 100 bpm resting, so I’m assuming I only had a mildly prolonged QTC interval previously. Now it’s very prolonged while my ICD is pacing me at 80 bpm for my lowest heart rate.
When you were diagnosed, had you heard of Long QT Syndrome before? What were your initial reactions, and how did you feel upon receiving the news?
I had heard about Long QT Syndrome before I got sick with POTS (Postural Orthostatic Tachycardia Syndrome), as I wanted to be a cardiologist. My initial reaction to receiving the news was being scared and shocked, and I thought I would never have a normal life. I felt hopeless.
When did you receive your ICD, and how has that changed your life?
On the day of my cardiac arrests, my electrophysiologist decided it was safer to switch from dual chamber pacemaker to ICD.
What does a typical day look like for you, and what’s your daily regimen as you manage your condition? How do you take care of yourself and move forward?
The first thing I do is take all my medications, all 14 pills, including Bisoprolol for my LQTS. Then, I make breakfast for myself, and begin my daily routine of hydrating myself by drinking lots of water and Gatorade. Later, I look to accomplish up to a 6km walk/run, or a 6km bike ride outdoors. Then, of course, it’s back to rehydration, eating lunch and doing some strength exercises.
I enjoy reading and practicing yoga, and after making dinner each night I like to relax by watching some of my favourite shows.
Before bed, I take my nighttime medications, 18 pills in all. I try to be in bed by 10:00 pm and get at least 10 hours of sleep a night.
If I'm having a bad day mentally, I force myself to exercise, and if that doesn't help, I call my counsellor for extra help.
You’ve had three instances of cardiac arrest, and are quite open about them on social media, educating your followers on the difference between cardiac arrest and heart attacks. What do you most want readers to know about cardiac arrest?
Cardiac arrests can happen to anyone, even those under the supervision of cardiologists. Mine went undetected. Mine could also have been prevented as I have always had a mildly prolonged QTC interval, but my high resting heart rate would hide my Long QT Syndrome.
What are the things in life that give you the greatest pleasure? Where do your passions lie?
My passion in life would have to be being an advocate for people who unfortunately cannot be here to tell their story. Additionally, I love the outdoors, spending time with family, exercising, and just enjoying life.
What insights would you share with other people newly diagnosed with Long QT Syndrome and their caregivers?
What helped me the most right after everything, was getting help mentally. I developed PTSD from the whole eventful day, and I reached out and got help. Starting cardiac rehab helped a lot, and having family helping with my bad days has helped me tremendously.
As you continue to share your story, what messages do you most want to convey to your personal and online communities?
I want people to know that they are not alone. Reach out to people you see on social media who decide to tell their story, and ask them questions you might have. I'm always happy to answer questions that can help them cope with this condition. I find researching helps me a lot to learn.
