Still alive!! 

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!

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not over it

I thought I was doing well living a “normal life”, watching my health doing light exercises. Well apparently, I am not. Why? Well a few months ago, I had to go to the hospital. I was having severe chest pains. At first when I felt this sharp pain I ignored it. I had ignored it because I thought “oh it’s nothing”. ( I know what you’re thinking….stupid why are you ignoring chest pains??) I had ignored this pain for a couple of hours. It was our anniversary, DC and I decided to go out for supper.

While we were at supper I continued to have these sharp pains, it felt like it was shooting directly to the heart. DC saw me jump one time when I had really bad one and asked me if I had the hiccups. I replied no, and said I’ve had these sharp pains in the chest. DC asked me if we should go to the hospital, and I of course said no I’m fine. But DC knew better and said he was taking me to the hospital.

When we finished our supper, I know again…stupid waiting until we finished our supper but I didn’t want to go. I was so nervous. I was being stubborn. When we arrived to the Emergency, the nurse asked what was my reason for coming in. I told her that I had chest pains. She looked at me with a puzzled face, like “really?” I told her that I have a history of heart problems and an ICD. The nurse asked me questions about my symptoms and said to go straight thru the emergency so I could be looked at right away.

We went in and the emergency nurse immediately put me in a room told me to undress so she could put the heart monitor on me. Then she immediately put an IV in, this all happened within 10 mins. I couldn’t believe how quickly they were attending to me. They told me they take any chest pain very seriously and do not take any chances. Well this made me worry, I started to panic and I started to cry because I didn’t want something to happen again. Made me think about when I first collapsed and when I was shocked. All the emotions of that made me cry and I realized I wasn’t over it. I wasn’t over the trauma.

The doctor came in and did an assessment, checked my heart, ordered a blood test to make sure I didn’t have a blood clot forming, sent me for an ECG. Nothing showed any signs of a heart attack or stroke, the next thing the doctor suggested that it might be my lead from the ICD. He said that it might be possible the lead moved and is giving me little electrical shocks.

I started to panic, I looked at DC and just burst in to tears. I did not want to hear that! The doctor said I needed a CT scan done to see if the lead moved but couldn’t do it until the morning when the tech would come in. DC and I went home for a few hours to sleep, which I didn’t get much of. I just of course worried. Finally morning came and we went back to the hospital for the scan.

After a few hours at the hospital I had a cardiologist come look at the scan results and told me that the ICD did not move! I was so relieved!! But we still didn’t know why I was getting sharp chest pains until after one of the nurses said she had similar pains but it was because she was exercising too hard. Well! It was like a doorbell went ding! In my brain and I knew! I knew why I was getting the pain! I was helping DC put boards down for our deck. I remembered, I was holding the board too long and I said to DC to hurry because it was making my arm sore.

The doctor had given me some medication to help with the pain but said if it still persisted I was to come back. After we left the hospital, I couldn’t believe by holding one board would hurt me that much and made me realize, I am still not over it and it will be one day at a time……….


no longer afraid

A year ago today, I learned very quickly life is short.

A year ago today, I changed.

A year ago today was the last time I ran on a treadmill.

A year ago today,  I had faced something I was afraid of.

Death…………..

It’s been a fear since I was little.

A fear…… I am sure I have in common with many people.

A fear…….of not being able to see, hear or talk.

A fear…… of not being able to see my children get married one day or have children of their own.

A fear…… that no one would remember me.

I remember a few years back I had watched an episode of the Montel Williams show. He had a guest named Sylvia Browne on, I know what you’re thinking “the psychic??’ Yes a psychic haha. Anyways, I remember that episode because Sylvia had a person ask why she was afraid of dying and what did it mean? Sylvia said that people are afraid of dying because it’s not existing on earth. When I heard her say that, I thought “ya right”. But since January 24,2012, I have totally changed my opinion on death.

My sister-in-law M sent me a video of my nephews Little A and Mr.T. Little A (who was 2 1/2 at the time) had missed me and wanted to tell me, so M started to record. Little A said he missed me and wanted me to come “out of Manitoba”, and in the back ground  Mr.T (who is 5) had started to sing a song “I miss her so much, I don’t want her to leave our hearts, I love my Auntie S, my Auntie”.  When he sang that, it made me realize, life isn’t just here on earth or about seeing that person all the time. It’s always going to exist in people’s thoughts and in their hearts. That will never “die”.

I believe when it’s your time, it’s your time.

A year ago today wasn’t my time and I am still here for a reason.

I am no longer afraid of not being able to see my children get married and have kids of their own because they will tell their loved ones who I am.

I am no longer afraid no one would remember me because my loved ones will.

I know it’s not going to be easy leaving but I know my family will be okay, and they will always be there for each other. Even thou I am not going to be there physically, I will always be there.

For that I am no longer afraid…..


difficult but healing

I know, I thanked the lifeguards for saving my life back in February, but I got a call on May 9th from the BC Ambulance Services letting me know that they were giving the three Lifeguards, the two Paramedics, and to the person who called 911 the Vital Link Award. I was so happy they were going to give them recognition for saving me. The spokesperson told me the ceremony was the following week and wanted to know if I could attend. I really wanted to see them all get the award. I told the spokesperson that I would get back to her by Friday. I had such mixed emotions during the phone call because of the questions they asked in case I wasn’t able to attend, and told me the media would be there. I know that the media wanted to show the community how proud they were of the Lifeguards, and Paramedics but it was just very overwhelming knowing they were going to be there.

I talked with DC and he thought it would be great to see the Lifeguards again since the last time was emotional. Not that it wouldn’t be emotional again but it may help me feel this way of thanking the Lifeguards/Paramedics could help me move on. I talked with my brother K, he said that if I couldn’t attend he would go on my behalf, but thought it would be good for me to come as well. I even asked my Therapist if it would be in my best interest to go. If I could handle it emotionally. She thought that it was wonderful that they were going to give them recognition for their actions, and asked me how I felt.  I told her I thought it was wonderful too, and wanted to be there. That I was thankful too. But I was really nervous because the last time I went to thank them, I had 2 ATP’s before I had even entered the building!! I didn’t want to be so emotional that my ICD would shock me. Dr. H said to remember about letting all the emotions out, not to hold it in, so that it wouldn’t get my heart rate up. It’s something that I am still learning to do. After I had talked with everyone, I knew I had to be there.

On May 15th I flew to BC to be at the award ceremony the next day. It was difficult to leave DC this time because the last time I left him I almost didn’t come back. DC reassured me, told me not to worry (DC couldn’t attend the ceremony) and I would be alright. Even thou I am sure DC at the time was worried too.  I even remember how scared I was flying that day. We had a bit of turbulence, and I remember thinking to myself “calm down S, don’t panic, don’t get your heart rate up!” I didn’t want to have a shock on the plane! I know it was minor turbulence but when you are nervous you think the worst haha.

K, M and I went to the Rec Centre for the ceremony and I couldn’t believe how many people were there! I wasn’t expecting that many people, I figured there was just going to be the three Lifeguards, the two Paramedics, the person who called 911, BC Ambulance Services and the Media. But there were Paramedics, Lifeguards, staff, family, the Radio and the Media. It was overwhelming, but it was great to see all these people who come to see them get the recognition they deserved!

I was really proud of myself, I only cried once when they talked about my story. After the ceremony was over, I met with one of the Paramedic that attended to me that day. (I didn’t meet the Paramedics when I thanked the Lifeguards back in February). She was more emotional than I was! She thought it was wonderful to see I was doing well! She said in all her 18yrs of being a Paramedic, I was the second person she helped save, survive. I was really happy for her knowing she helped me too. I even met one of the Lifeguard’s family member, and I told them how thankful I was for their daughter that day. The Media asked if I would give them a quote and picture of me with the Paramedic and Lifeguards. I decided to let them have a picture and quote because it would make this story complete. When I left the Rec Centre that day, I felt so good! Like weight had lifted off my shoulders knowing they all got recognition and another way of saying THANK YOU. Having this ceremony for the all the people that day made me know I could start healing………………………….


learning

After my first shock, I had a very hard time adjusting again. I felt I couldn’t do anything because if I did, I would get another shock. I was afraid to shower, go near the stove or even go up and down the stairs. I didn’t know what made my heart rate go up that day, because all I was doing was standing stirring. How could a heart just suddenly go crazy?? I had called the Pacemaker clinic to let them know I had received a shock. They said do a transmission from home (a transmission is a machine that you plug into the phone jack to read the data from your device) to see if it was in sinus rhythm or not. Did a transmission and I waited……….I didn’t wait long but when you are sitting at home it felt like hours when it was probably only ten minutes.

When they called me back, they told me that they believed I had received an unnecessary shock to the heart. Well!! talk about anxiety!!!! I thought it was a necessary shock and here it wasn’t!?! The Doctor said he believed that my heart did an irregular arrhythmia on the top of the heart and because where my ICD lead is (its on the bottom), it “felt” the arrhythmia and shocked me. His suggestion was to come in to adjust the settings to the device. He believed that the settings were too low and wanted me on a beta blocker to help regulate the heart rate. The clinic said I would come in three weeks, so that the beta blocker would be in my system for a few weeks before I went in for my settings change.

I tried my best to stay calm and do regular things again. Knowing that DC had to go back to work soon and that I would be by myself?? That was difficult. I didn’t have any troubles being by myself before but this time was different. I remember the first day he went, I was afraid to stay by myself.  All I could think of was “what happens if I get a shock”??  “what if I need CPR”??  “what if I received a shock and fall, knock my self out”??  So many things were going through my mind that day. When DC came home that evening, I broke down! Most people who know me, knows that I do not get emotional like that! I am a very strong person. I’m the one who is the shoulder for everyone. So this emotion was very new to me, I broke down three times that week.

During the few weeks before I went in to get my settings changed, I didn’t want to shower without anyone in the house, I didn’t go anywhere (plus I wasn’t allowed to drive) I didn’t even go downstairs. I was going through a lot of anxiety, DC could see I was struggling and suggested to see a therapist. A therapist?? I wasn’t sure if I wanted to see a therapist because everything to me was fine. Until one day I knew that I couldn’t be afraid of my heart, and most of all, my mind. DC set an appointment with the therapist the same day for my settings change. What a day!!!!

The therapist appointment was first, looking back at it now, I would have to say even thou I was nervous and didn’t know what to expect. It was the best thing for me. I know that when we met that day, I felt the weight was lifted off my shoulders. I knew I needed to see her again. I had seen her every two weeks for about four months and as I am typing about her, I didn’t realize how much I miss her. She helped me in so many ways. I didn’t see her as a therapist, I saw her as my friend. She taught me that I needed to learn to express my feelings more, if I felt mad – be mad, and if I felt sad and wanted to cry – let it out! Don’t hold it in! Learning to do this is hard for me. I have always kept my feelings aside, don’t get me wrong, I still said my opinions but I tried to never show my “sensitive” side. I didn’t like to cry or cry in front of anyone. ANYONE! even DC haha. I said before, I was the strong one! I helped get people through their tough times but now? it’s time for me. For me. I need to, so that I will be a better person, wife, mother, sister and friend.

The next appointment was at the Pacemaker Clinic to change my settings. When I say settings, I mean they set a range that would monitor the heart rate and the defibrillator would decide when it needed to shock the heart. So mine were set at monitor at heart rate 170, ATP (Anti-Tachycardia Pacing) at 176 and if the ATP didn’t help regulate the heart back to normal then I would receive a shock. They said that it didn’t give me much warning between the monitor and the first ATP, so they changed it. They changed it to monitor at heart rate 155, ATP at 200 and if it didn’t regulate then shock at 200. I know what you’re thinking, 200?? That’s pretty high! Yes but in my case my heart does get over 176 more than normal, so they figured if its going to go that high a lot then I would be shocked for no reason. This made me feel 100% better knowing that I had a better range of monitoring. I felt really good that day, knowing that there is light at the end of the tunnel.

I am learning a lot with this defibrillator and I decided that it will not take over my life. Life is short. I have learned that twice……….


shocked!

After all the things that I had gone thru in the beginning of the year, I finally felt that I was going to be alright! I was healing nicely and I had even decided that having an ICD wasn’t going to be that bad. Our oldest C had come down for Spring break to visit, because she didn’t get a chance to see me while I was recovering in BC, or for my father’s death. When C arrived, we had a family photo done so that we could update the old one, plus D had her Grad photos done at the same time. It was so nice to have the 5 of us together.

The next day, I had decided to make lasagna for supper and cherry cheesecake for dessert. While I was preparing the meal, I was standing at the stove making the meat part of the lasagna and I thought I felt something in my chest. I just shrugged it off thinking it was nothing, so I just kept cooking, but then I felt something again. I stopped immediately and knew that I should go and sit down. When I was at the Pacemaker Clinic they told me that no matter what I was doing whether it was cooking, showering, walking etc, and I felt anything I was to find a safe spot and sit down.

I immediately went to the dinning room table and sat down but I didn’t have much time because I had received my first shock! My ICD did what it was supposed to do when my heart needed it. The shock was very quick, and it was not as painful as I thought it would be, don’t get me wrong it did hurt and like someone had kicked me, but not what I was expecting. The jolt to the heart was so powerful it almost threw me backwards and off the chair but DC rushed over and held my legs down so I wouldn’t. I was so thankful that DC was home that day. I was in shock for some time and tried to stay calm because I was afraid it would go off again. When I went to bed that night however was hard, I was scared that it would go off while I was asleep and what if I went to sleep and I didn’t wake up? DC was so thoughtful, he knew that I was struggling with the thoughts of not waking up that he left the bathroom light on.

I had a lot of trouble that night with my heart rate. The more I felt my heart go up the more anxiety I had. The funny part of it all was every time DC got into our bed my heart rate would go up, and I would get hot. This happened at least four times. He would get up get me a cold cloth to put on my forehead, and check my heart rate to make sure I was okay. DC wanted to take me to the hospital but I refused. I am a very stubborn, and I didn’t want to go to the hospital! after all I had just been there.
As I have said before DC is very thoughtful, after all the in and out of bed, he felt that he should sleep on the floor beside me. He slept on the floor with his pillow and one blanket all night. To this day when I think of what he did, I cry because knowing he had shoulder surgery only a few months earlier he slept on that hard floor for me…..

The shock happened on March 23, 2012 @ 2:45pm. I will never forget this day. I will never forget the feelings that I had that day, the hurt, the worry, and most of all………..
the love………………….


recovery

Before I was released from the hospital, February 1st, they had to test my Implantable Cardioverter Defibrillator to make sure it was in the right spot and show me what to look for when or if something were to go wrong.  They took me to a room that had a laptop type computer with a wand to “hook” me up to see how it was functioning. The nurse told me that she was going to tell me what she would be doing step by step so that I knew what to feel or not feel. I was so nervous! I even said to her, “You’re not going to shock me, to test it? are you?” she just giggled and said “No, they already did that when you were in surgery”. The nurse did some tests and I was getting a little nervous because I hadn’t felt anything yet, but she told me that I was going to feel my heart race. I couldn’t believe that this device could do this! and yet from a computer! I felt my heart pump faster, I was so afraid that she was going to make it go too fast then I would end up having a shock! but when I looked at the computer, it had shown my heart rate was only at 90, I knew it wouldn’t shock me. But I was still scared thou. Then she said that she was going to show me how it would feel if the battery is low or the lead from the ICD to the heart was not in place. She explained that it would feel like when your cell phone was on vibrate, and instead of feeling that vibration in your purse or pocket, I would feel it in my chest. Well let me tell you that was the weirdest feeling I had ever felt! The next weird feeling was the flutter, the flutter that would happen in my chest if my heart rate would go to 176, it would give me an ATP.  ATP is Anti-Tachycardia Pacing, which tries to pace the heart to its normal rhythm and if it doesn’t pace to the normal rhythm then it would give me an electrical shock to make the heart go back to its normal rhythm. The nurse then gave me a print out of my “settings”  which were that the ICD would watch my heart rate of 170 and at 176 it would give me an ATP and if it didn’t go back into rhythm then it would shock me.

I had stayed with K and M until I was ready to take the journey back to Manitoba. Before I took my journey back to Manitoba, I had yet another day that was going to be difficult. I wanted to meet the people who saved my life at the Rec Centre. I wanted to see the people who went with the voices that I heard that day, and to say “Thank you” for what they did for me. On February 7 th I faced the people who saved me, I cannot tell you the words to describe how I felt that day. How do you Thank someone for saving you? there are no words to completely say “Thank you” to someone who just gave you another chance at life.

Before I had walked in to the Rec Centre, I was very emotional. My emotions were so overwhelming that I had felt a flutter! I had felt my first ATP! I was so emotional that it had caused my heart rate to go high, so I tried to calm my self down and DC was there to hold me while I breathed. I was trying really hard to breathe and keep calm when I felt another flutter!(ATP) I had to keep my heart rate down because I knew if I didn’t, I would receive a shock. I didn’t want that to happen since it was only one week ago that I had the ICD implanted! I had finally calmed down enough to go in the building, they were waiting for me to come into the room where they were waiting. Well! I was so emotional that all I could do was cry. I think it was only for a few minutes that I cried, but it felt like a lifetime. I stood there looking in the faces of the lifeguards that saved my life and just cried, saying “Thank you”. I just didn’t know what else to say. What else would you say?  DC, K, and M were there with me and they just let me do what I needed to do. The lifeguards were so humble, they just kept on saying that they were happy to help and it was their “jobs” and that they were happy to see me alive. I told them I understand that it was their “job” but I felt that it wasn’t just their “job”. I felt that they were there for a reason, they were there to save me that day. After I had thanked the lifeguards, I knew that my recovery was going to be alright, that I was going to be alright. I wanted 2012 to start all over and start living, but when I got home something else happened………….