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!
When I last left you, I was in the hospital…………….. doctors had requested some blood work, what they called Blood Gas, it’s supposed to check your blood levels and they have to draw it out of your main artery. Which hurts because they took it out of my wrist.
The Doctor said they were keeping me over night for observation. I told them that they didn’t need to keep me over night, that I was fine and that I just fainted. The Doctor held my arm and looked at me, said “No you didn’t just faint, you suffered Sudden Death”. I just sat there in the hospital bed in shock. Just thinking to myself, really?? Sudden Death?? I really thought I just had fainted. The Doctor then said that I was going to see a Cardiologist in the morning, to see what we should do next.
I won’t lie, trying to sleep in a hospital is not easy let alone try to sleep when all of this happened. I was in shock still and they gave me a sedative to help me sleep. However, I had so much adrenaline that the sedative didn’t stay down. The nurse said that I had an allergic reaction to the sedative. I was actually scared to sleep, because I thought if I had supposedly suffered this “Sudden Death”, who’s to say that if I go to sleep and I don’t wake up? It actually took me a few days before I could sleep and when I did sleep it was every 2-3 hrs so it wasn’t all that great either but it was some rest.
The next morning the Cardiologist came in and discussed what he thought and clarified it to Sudden Arrhythmia Death Syndrome. He also said that I was a “miracle” because only 1% of the population get this and out of that 1%, less than 1 % survive. Well talk about shock! plus I still couldn’t get over the fact that I had “died” so to speak. So that evening they airlifted me to another hospital. I was airlifted to another hospital because the hospital I was at didn’t have all the equipment, for Cardiologists to do intensive testing with my heart. That was the first night I spent by myself with out DC and K. I must admit it was really hard not to have them there, since they hadn’t left my side. I didn’t sleep well that night.
In the morning they already got the intensive testing started. I was so nervous because DC and K weren’t there right away, they had to drive, it was going to take them 6 hrs and I wasn’t sure exactly what they were going to do . My first test that they did was an angiogram. I have heard of angiograms before because my grandmother had this done. She told me that they went in her main artery in her leg, and in her arm, well when I remembered that, I was so scared! Scared that it was going to hurt! No matter how many needles I have had, I still get scared of them. The nurses told me what exactly they were going to do, that they were going to freeze my wrist and use the main artery. Then they were going to put a tube up with a camera and dye to see if there were any blockage in the heart. Well let me tell you, I think that I would have rather had my three kids, open heart surgery and the Blood Gas done again instead! It was so painful! I couldn’t feel the poke but I could feel the tube go up my arm to my heart. After they did it I remember thinking to myself, wow! my grandmother did this three times??? twice in the arm and once in the leg!! I knew I had more respect for her after that!
The test results of that came clear, had no blockage at all. Thank goodness! On to the next test!!
What my arm looked like after the angiogram, the top picture was when they took the plastic bracelet off to keep the pressure on my artery and bandaged it up, the bottom one was when they took the bandage off.