Then in 2006, my aunt was taken to ER after collapsing in her kitchen. She was told that she had hypothyroidism and needed an ICD due to a prolonged QT interval. I was surprised and shared my information, but I felt it was truly just a curious fact. Later, in the fall of that same year, my mother began having episodes of “passing out” and my dad would find her “asleep” on the floor or in her chair at the computer. One day she called 911 to just have her vitals checked and as the Paramedics were checking her she went into a deadly heart rhythm and full code arrest. They quickly defibrillated her and took her to the ER. She was observed in the ER having multiple runs of ventricular tachycardia. The next morning, she was going through an angiogram procedure and went into full code arrest 2 times, having to be resuscitated. An ICD was placed and when she woke up, she was informed she had a condition called Long QT syndrome. This was getting spooky and way too close to home. I was still not convinced that I was truly in danger.

Shortly after, I was informed that a cousin of mine had just died at the age of 33. She had gone for a run, came home, took a nap, and was found dead by her mom. That was it. I was done messing around. After seeing my cardiologist, I was genetically tested, and it was confirmed that I had Congenital Long QT Syndrome Type 2 and Type 5. I quickly scheduled my ICD placement surgery. I was informed I would no longer be able to be a Firefighter as a result. This was devastating but I had to do it. I felt it was the only real, safe choice. I had a full and exciting 18 ½ year career as a FF/PM with some of the most amazing people in the world. I was lucky.

In 2007 I became a Certified Flight Paramedic and flew for nearly 9 years while I put myself through nursing school. I became an RN in March 2016.

Through the years I have educated myself as much as I can about my condition. I have been on a solid treatment plan of Propranolol ER 80mg daily, Potassium 99mg daily, Magnesium 250mg daily, with every 6 months a checkup with the cardiologist and device interrogation. I have the Credible Meds app on my phone and always cross-reference every medication I take to even treat a simple cold.  I have had a few bumps through the years, but I have done relatively well.

Then in January of 2021, I went for a routine mammogram, and they found something. Long story short I was diagnosed with Malignant Invasive ductal carcinoma- HER 2 positive breast cancer. Well, this was going to be a challenge. What medications would we use that are safe for LQT? What about chemotherapy? What about nausea and side effects? What about losing electrolytes? This is why I am sharing my story. I thought I am sure I am not the only LQT survivor that this will happen to. I wanted to share my experience and what I’ve learned. Anything to help or encourage another who may face this or something similar.

My first advice is to always speak up for yourself, be your own advocate. Never assume. We had a saying in the fire department “trust but verify”. The first step for me was the placement of a port. The team was wonderful and allowed me to check every medication and we spoke openly about the procedure. It went perfectly. I only used Tylenol for the surgical pain when I got home.

After port placement, I was scheduled for chemotherapy. One of the biggest challenges was finding an antiemetic to treat the strong nausea that comes with chemotherapy. My doctor spent considerable time on this and found a medication that worked beautifully. Aprepitant 125mg on day 1 of chemo and 80mg on days 4 and 5 at the same time each day.  Another challenge was to find a safe anti-diarrheal. Lomotil 2.5 mg tab up to 4 times a day as needed worked perfectly and usually 1 to 2 doses worked for 24 – 36 hours. Steroids are used prior to chemotherapy and for days after. Dexamethasone worked well at 4mg every 12 hours on days 2 and 3. The chemotherapy itself posed no danger to LQT. Any pain I had in my head, joints, or muscles was controlled with Tylenol. I have completed the 6 prescribed rounds of Chemo and I have seen my cardiologist, and all is well at this time.

I am now waiting to hear about surgery. I will continue to ask questions, advocate, and educate myself regarding the medications and procedure to keep myself safe. I am doing double flat mastectomy and the challenge is the repositioning and safe manipulation of the ICD. My surgeon is confident and has performed this plenty of times and I trust her. I am fully aware it will look very different than it does now. That’s ok. I can LIVE with that.

I truly do feel so very lucky to have been diagnosed early enough twice with conditions that are treatable and manageable ONLY if caught in time. I am a witness to the benefits of regular checkups and routine exams and how they can save your life.  I hope this information and shared experience can help at least one person. We are survivors and hopefully there will be many more in the future because of us, and the amazing researchers and doctors fighting the fight!