Wednesday, May 16, 2018

My Long Qt-Versary

Yesterday marked 17 years since I was officially diagnosed with Long QT Syndrome, which means I was diagnosed on May 15, 2001. Some people may ask why I choose to celebrate this day? And the answer is simple: I celebrate because it was a life changing moment in my life. It has defined the rest of my life, although I do my best to not let it control me. After all, I'm normal in every single way, except for this one thing. I had to change a few aspects, but other than that, I'm fine.

It also means that I've been taking my beta blocker medication for 17 years as well. I'm on Nadolol and at times, it wasn't easy. I was only 14 years old when I started taking it. It left me really fatigued for several weeks and getting back to an exercise routine (with only activities that my cardiologist cleared me for) was nearly impossible. I've been through a couple dosage changes. The first one didn't effect me too much as it went only from 10mg twice a day to 20mg twice a day and it was within a year I believe of my diagnosis. It was meant to help me with my migraines at the time, but that's not part of my Long QT story. In 2009, my dosage went from the 20mg twice day to 40mg twice a day, which is where it currently is to this day. It went up then because I got too used to the old amount. That was definitely the worst I have ever felt while my body adjusted to the new amount, but I managed to get through it slowly but surely. I will elaborate on all of this as I'm bringing back my Long QT series soon. I had started it last year, but circumstances have prevented me from continuing it. I'll post my links to my story and how I got to the diagnosis at the end.

While dealing and managing side effects hasn't always been easy, I feel like it's nothing compared to the fact that I haven't had a major symptom of Long QT in these 17 years as well (my last seizure was in February 2001, only a couple months before getting diagnosis). I have had some minor issues so I can't complain. It does help that Nadolol is the preferred and best treatment in managing Long QT Syndrome. Click here for a recent article discussing this issue. This does not mean that everyone tolerates it as well as I have. 

Since the Nadolol has worked so well with me, I wanted to take the time to note the importance of taking medication as recommended. Yesterday, in one of my support groups, someone named Ellie posted the following about her daughter: 

This past Sunday, my daughter-Taylor came face to face with the ugly truth of SADS (Sudden Arrhythmia Death Syndrome)- LQTS Type 2. In 2012, our entire family was genetically tested for LQTS. We tested positive for the HERG gene a rare mutation which puts us at risk for sudden death. At the time of diagnosis, Taylor had not had any warning signs or symptoms typical of LQTS Type 2. Her recorded QT on EKGs at that time was 460. The EP and cardiologists that were on our family's case felt that treatment with a daily beta blocker would be appropriate for Taylor.  Taylor began beta blockers but struggled with the side affects. She decided on her own that she would stop the betas.
Fast forward to this past Sunday, I can say we are so lucky to have her with us today! She survived a sudden cardiac arrest Sunday evening. Her roommate found her unconscious, blue, and not breathing- He was quick enough to act and immediately called 911- by the time the first responders arrived her heart had naturally and slowly began to revert back to its natural rhythms- and CPR was not necessary by the time the paramedics arrived. She was transported via ambulance to the local hospital and admitted.
Upon arrival a 12 lead EKG revealed her QT was 525. She has been seen by both cardiologist and the EP and all appropriate tests have been run. She is scheduled for placement of an AICD this afternoon at 4pm.
Taylor's birthday is on the 16th- 26 years old on Wednesday! As her mother- I am so thankful she is here with us and relieved the cardiologists are being assertive and pro active with their treatment and the decision to move forward with and AICD placement. We will be celebrating way more than just a birthday this year!!!!
Taylor is a healthy very active and social, young adult. She had created the perfect combination of circumstances to lower her QT threshold which put her at a very dangerous high risk for the SCA to occur. She is an active water girl and had spent the weekend at the lake- water sports, lots of sun, alcohol consumption, energy drinks, little sleep...and dehydration were all part of the picture. I share this here in hopes to raise awareness of the dangers and warning signs of this rare genetic disease.
We were given permission to share, but I changed some names/places for privacy. I bear no judgement on her daughter's decision to not take the medication, but I'm putting this out there to know the risks involved. The problem with Long QT syndrome is that it can be unpredictable and events can happen at any given time, even if you haven't had a symptom in years. The purpose of betas and other treatments is to prevent events from happening, but it doesn't necessarily mean another event won't occur. That's one of my biggest fears - that I'll have another seizure or symptom at some point in my life even though the Nadolol has done its job for 17 years. It's the scary part of Long QT Syndrome and it doesn't come with any warning - the symptoms happen suddenly with little to no warning.

As I celebrate this day, here's to 17 more years symptom free.

My Journey that led to Long QT Syndrome:
My First Seizure
The Second Seizure
My Third Seizure Part 1
My Third Seizure Part 2 and Diagnosis

For more information:
Risk Estimate, Best Treatment in Long QT (I linked to this in a paragraph above as well)
Sudden Arrhythmia Death Syndromes Foundation


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