Yep! Its true, I’m still alive! I just haven’t written in a while and it’s time to update. Lots happened in 2014.
First, I finally got an appointment to see a genetic counsellor to see if I could get Long QT genetic testing done.
On May 21, 2014 I went to the Alberta Health genetic clinic and talked with Tara the genetic counsellor about my case. With reviewing my medical history and collapse, they didn’t see why I wouldn’t be approved for Alberta Health to pay for the test. They also said it would take a few weeks to find out from the board if I would be approved and if I was then it would take a few months for the results.
After waiting over 2 years to have this test done, I was so happy to have someone help me get this going. I left the clinic emotional because over 2 years since my collapse I was finally going to get answers. When I shared my story to the counsellor I thought I wouldn’t be emotional. But I was. As my good friend once told me emotions are like waves of the ocean, sometimes they will be calm at bay and sometimes rough. It’s true! Some days I don’t even think about it and I’m fine. But when something special happens I get emotional and thankful I’m alive!
For a few weeks after the appointment I started to worry……..in other words I started having anxiety. I worried… what if I wasn’t approved? How would we pay for it? What if I have Long QT? What if I didn’t?? What would be my next step? Would there be another test to find out answers? The list went on and on.
I was up and down. I was beginning to feel anxiety that I had after my collapse, so I decided to see my Dr and ask him if I should see a psychologist. He thought that I should and meet with one he highly recommended. I ended having a phone session with the psychologist and what a difference that made. She was so helpful. She told me that it was normal to have these anxieties with a trauma I had. I felt relieved! I really did think I was going crazy! She said I could call her anytime if I felt I needed to, but after that conversation I knew I wouldn’t need to. I knew there wasn’t anything I could do until I heard from the clinic with the answers.
June 10, I received a phone call from Tara telling me, I’m approved!!!! The board was going to do the test! I was so happy!! Tara said that I had to have my blood drawn so they could test it and we would get the results in a few months. She predicted the fall sometime. I quickly went got my blood drawn that day! I didn’t want to delay it any longer.
On September 4, I found out my results of the test……..it was good news and bad in a way, the good news was that I didn’t test positive for the Long QT gene, and our children/my siblings do not have the gene either. They also will not have to have ICD’s implanted for precautionary measures which is a relief! But the bad news is that there isn’t any other testing for the heart that I can have done and so that gives me no real concrete answers to why my collapse happened. So it gave me mixed feelings not that I wanted to have Long QT but I just wanted to have an answer. After all we are human and we like to know answers.
So in a nut shell, I am still without answers but I am so blessed being alive!!! I’m thankful for a lot of things, we have three beautiful children, a granddaughter who was born on April 9/14 and one more grandchild on the way! What else could I ask for!
2014 was a good year!
After I had my angiogram, I had to have drug challenge tests done to see if I had Brugada Syndrome or Long QT Syndrome. I had never heard of these syndromes before and the Cardiologists had explained each to me. Brugada Syndrome is a genetic disease and can be found by an abnormal electrocardiogram (ECG) and an increased risk of sudden cardiac death. Long QT Syndrome is a disorder of the heart’s electrical activity and it can cause sudden, uncontrollable, dangerous arrhythmias in response to exercise or stress. They say that people who have Long QT syndrome can have arrhythmias for unknown reasons. However, not everyone who has Long QT syndrome has dangerous heart rhythms but if and when they do occur, they can be fatal.
The Brugada syndrome the test was done as a ECG with medication, where they put the probes on your chest that record the electrical impulses that make your heart beat, and these electrical signals can help them detect irregularities in your heart’s rhythm and structure. Your heart rhythm can change and sometimes the ECG may not detect the abnormal heart rhythm so that’s why the doctor gave it with medication thru my IV. That test came up negative.
The Long QT syndrome test was done as a nonexercise medication stress test. An ECG test is performed while you are given medication that stimulates your heart in a similar way to exercise. This drug was also inserted into my IV. The drug has an adrenaline substance that your body releases in response to stress. So in this stress test, the doctors monitor the effects of this adrenaline on the way my heart recharges. They said that this test can unmask in some people what is known as concealed Long QT syndrome which is a normal Q-T interval at rest. Doctors also said that some people who have Long QT syndrome, fainting spells are sometimes triggered by sudden bursts of adrenaline in the body, such as intense exercise or emotional upset. That test came up negative.
They did all the testing that they thought that they could do for me and still had no answers on why I had collapsed that fateful day. The Doctors were stumped! because the tests came up negative, they decided that they wanted to have a genetic test done for Long QT syndrome.(which I had a consultation on May 9th) Meanwhile they had discussed putting something foreign in my body. The foreign something is a device called an Implantable Cardioverter Defibrillator (ICD). An ICD?? I was given a manual, (well I call it a manual) it’s a pretty thick booklet on this device and I couldn’t believe what I read! The definition of an ICD is a small battery-powered electrical impulse generator which is implanted in patients who are at risk of sudden cardiac death due to ventricular fibrillation and ventricular tachycardia. The device is programmed to detect cardiac arrhythmia and correct it by delivering a jolt of electricity. A shock? I was scared when I read that!
After all the discussing with doctors and my family, it was best that I had this implanted due to the nature that they had no answers why I collapsed and it possibly could happen again. And if it did happen again, who knows if I would survive? On January 31 they had implanted the ICD. The first picture is what the device looks like outside the body and the other pictures are the healing process of inside my body.