I was diagnosed with Long QT syndrome in July 2001, I was 23 years old. I decided to share my story in hopes that it may help someone in the future diagnosed with this same condition. When I was first diagnosed there was a girl my age that was also a patient at the same clinic, so they set up a phone call for us. This was a huge help for me, not knowing how to deal with what I was going through. I also have offered this same help to another in a similar situation.
I gave birth to my son June 30th 2001. I was 10 days overdue and needed to be induced. I was sent to the hospital for the induction June 29th very early in the morning. I was first induced with Dinoprostone in the morning and then the next day they broke my water around noon and then also gave me Pitocin. I delivered at 3:09pm. We were not released from the hospital until Monday July 2nd because my son Braden was not eating. I was not producing any milk and he would not take a bottle. Finally, he took a bottle and took some formula so they could release us.
The night of July 3rd I woke up in the middle of the night to feed Braden. I moved from the bed to the recliner and my boyfriend James was going to pass Braden to me, I said wait I don’t feel good. I then went into what looked like a seizure. James called 911 and I woke up to the paramedics being there asking him a lot of questions. I was taken to the hospital and went through a few tests and then released. I was to come back the next day to see a neurologist. We went back the next day and went through a few tests and was diagnosed with Epilepsy and was prescribed Dilantin. The neurologist told James I was going to have seizures and not to call an ambulance. I filled the prescription and went home and took the first dose. That night, July 4th I woke up in the middle of the night to use the washroom, I went into a seizure while in the washroom. James must have heard me fall but I don’t quite remember because I was then in the hallway and he was there asking if he should call an ambulance. I said yes. I was again taken to the hospital and they decided since I had only taken one dose of medication that I need the full dosage in my system to help with the seizures. The nurse asked me several questions that I could not answer, and it seemed she was a bit irritated with me. I apologized that I did not know how much I weighed because I just delivered a baby a few days prior. She asked me to jump on the scale and believe me I wasn’t doing any jumping I was still in a lot of pain from delivery. They hooked up an IV and proceed to give the medication. Once it started going into my veins it was burning and hurt a lot. I notified the nurse that something didn’t feel right, her response was “It is just a small bag can’t you take it for another 15mins”. Immediately after that I was told my heart stopped and I need to be resuscitated. The emergency doctor shocked me I think two different times and he said I also had a cheeky answer to his questions when I was again conscious. He told me that he asked if I knew what day it was, my response was “well, ya. It’s Wednesday but actually it’s Thursday morning because I am supposed to be going to the stampede parade today!” He was pretty sure I was ok. Ha!
I was admitted to the ICU after that, but I don’t remember much about that stay just what people told me. When I woke up, I was crying and was obviously very scared and didn’t know what was going on. I had a couple of visitors and I kept asking the same questions “did you say my parents were coming” and “did I tell you I had a baby”. I went through a whole bunch of tests and once I was stable was transferred to the CCU. Both my arms (mainly my biceps) hurt so bad where they had put IVs and medications in, I could barely move them they were rock hard. They told me why that had happened, but I don’t remember. I have moved again to another room which I believe was still the CCU and stayed there for several weeks. I had several visitors there, friends, family, doctors, and they even let Braden stay with me. They gave me a bassinette from the labor and delivery unit and let me store his bottles in the nurse’s fridge. I went for a bunch more tests. It was here the Dr. Wyes came in and talked to me. He told me that they thought that I could possibly have Long QT syndrome. They gave me an article to read about pregnancy-induced Long QT and a bunch of other information. I was going to be getting an implanted cardio defibrillator, ICD.
I was transferred from the Peter Lougheed to the Foothills hospital for my surgery to implant the ICD. There was no one around that was my age that was going through the same thing all older people, mostly men. I waited for surgery for a few days there, while starving each day waiting to see if they were getting me in. I was very scared I had never had surgery before and now it was implanting this device inside my chest with leads going into my heart, what was this going to feel like. I had a lot of instructions on what to do and what not to do. I thought, why is this information all is geared toward the elderly nothing about my situation but followed everything to the tee. I woke up from the anesthesia and I was crying, I guess this is normal for me as I found out in numerous surgeries over the years. I was very sick and in a lot of pain. They discharged me the next day, gave me a prescription for multiple drugs and took my driver’s licence for a year. So, I have a new baby that I’m afraid to hold for fear of having another seizure and dropping him, an ICD implanted in my chest, a bunch of drugs and no drivers license. The new normal started, doctors’ visits for myself and for Braden. Before long I settled into my new life and got used to everything, but I don’t think I processed everything emotionally that had just happened to me James and I just started raising our son.
I realized after all this had happened that there were several incidents that happened in the past that could have been warning signs to a medical condition. July 2nd the evening I was released I remember waking up in the night because Braden was fussing a bit. I brought him into bed with us and I was sitting up holding him, the next minute I was laying down and he was laying beside me. I felt weird but I just thought I was tired, I realized later I must have had a seizure. I remembered later having that same feeling when I was younger where I was sitting up in bed and the next thing I knew I was laying down again. I was at a party and there was a paddling pool in the front yard, I remember stepping into it and the next thing I knew I was laying on the couch in the house. I was at a bar and I was dancing on the dance floor and the next thing I knew I was laying on the floor and the paramedics were there to take me to the hospital. I was released with no explanation. I was at my boyfriend’s house and we had decided to smoke a joint, the next thing I knew I was on the floor and the paramedics were there to take me to the hospital. I was released with no explanation. I had seen my family doctor and was told not to smoke pot. I am very lucky to be alive.
During the next two years I was humming along working and living life. I got engaged moved houses started planning a wedding and then moved again and broke off my engagement. Purchased my first home and moved in. After life settled down a bit all that I had been through it just hit me and everything came crashing down.
The first treatment I received from my device was in 2003. I was mowing my lawn and the device started shocking me. It shocked me numerous times in a matter of minutes, I was conscious the entire time and it was incredibly painful. My neighbors were outside, and they called 911. Once I was at the hospital my device was interrogated and they found out that some settings were not quite right. All the settings were updated appropriately, and I was sent on my way.
The second treatment I received from my device was in the same year but this time I was at work. It was 5pm and I ran up the stairs to complete one more task before I went home for the day. As I was walking to the department, I knew something wasn’t right, I feel like I could hear it charging and Bam I was shocked. I tried to make it to my co-worker Chad’s desk (his father has an implanted device so he kind of knew what I was going through). He wasn’t there but my other co-worker Graeme was I asked him to call 911 and I was shocked again and down I went. While he was on the phone with 911, I was shocked several more times, I was conscious the entire time. Extremely painful and very embarrassing. Graeme was holding my hand and he felt one of the shocks go through me into him. I was taken to the hospital again; my device was interrogated, and I was sent home.
After these incidents I developed some mental illness. I started suffering from PTSD, agoraphobia, anxiety and severe panic attacks. I wouldn’t eat sleep or leave the house and had continuous panic. I took a few months off work to deal with these issues. I still suffer today but not even close to the extent at that time.
I started gaining weight and drinking alcohol. The food made me feel better and the alcohol made me forget about the anxiety. I continued this for several years before I had the courage to get healthy again. I had gained so much weight that I got to the point where I needed to do something about it but was afraid. I started working out, but the anxiety got worse. I decided to get myself a heart monitor so I could see what my heart rate was on a continuous basis to ease the anxiety. The monitor helped and I was finally back in shape again, but I was still eating junk and drinking.
I got into a new long-term relationship in 2009. In the beginning I was very happy, I thought I was going to marry him but, in the end, it was not the right relationship for me. It was a very unhealthy relationship. He was an alcoholic which did not help my alcoholism at all, it was just an excuse for me to drink more. I had several heart episodes during the time I spent in the relationship which lasted 8 years. I had gained all my weight back again and continued to drink more. The heart episodes happened mostly when I was drinking, and we were fighting.
In 2013 Braden turned 12 and it was time to start testing him to see if he had Long QT syndrome as well. He was referred to a cardiologist as well as a geneticist. He was diagnosed with possible Long QT and was put on atenolol. He refuses to take them because they make him tired and he feels that he shouldn’t have to take something for a condition he may or may not have. I was sent for genetic testing to confirm that I have Long QT syndrome. It takes a long time because we had to apply to the government to pay for the testing. Finally, we got approval and my sample was sent in, the results were nothing. I was not a match for any of the known mutated genes for Long QT, so do I have Long QT? We still don’t know.
In 2018 I was referred to another cardiologist that works with a genetic group. I reviewed my whole story with him again and he said they would be in touch. In 2019 I was contacted by a group called Care for Rare and I had been selected for a genetic research project. My cousin had an eerily similar story when she had her son but was diagnosed with epilepsy. I gathered all the information they had requested from me and my family as well as blood samples. I haven’t heard anything since but maybe one day I will have an answer, I am very grateful to be a part of this project. I would like to have some answers for my son who is now 19 years old. He’s been dealing with depression, anxiety and panic attacks this year and not knowing if he has Long QT or not is a struggle and very scary. He does not take a beta blocker, but he is now taking an anti depressant. He eats healthy and workouts out 4-5 days. He wears a fit bit to monitor his heart rate. His family doctor has referred him back to a cardiologist, so I guess we will see what happens again.
In 2022 I will be scheduled for my third replacement device. I had my first replacement in 2007 and the second replacement in 2014. I was not prepared at all for the first surgery but by the second I was a pro. The last surgery the nurse said they would see if the doctor could clean up my scar a bit, nope, when I removed my bandages, I had two scars now! What!! I was so upset. My only concern this time is when will I be able to work out again. I am quite fit now; I work out 6 days a week and eat a healthy diet. Of course, I also eat the burgers, fries and pizza occasionally because I love food. I still struggle with alcohol and I think I always will. I try and have a maximum of 4 glasses a week and save it for the weekend. Holidays and vacations, I may indulge more then I should.
I have learned a lot over the last 20 years, and I hope my story will help someone who is just starting this journey or needs some support. My answers will come I will need to be patient.