Isn’t it amazing how the mind works??
It’s amazing how the brain can tell your body what to do.
It’s amazing how stress can affect your body.
I am just figuring this all out. I know what you’re thinking……”didn’t you know this?” Well I did, but just didn’t realize it, until a few weeks ago. My brother K asked me in the hospital (before I had my ICD implanted), how was I going to live the rest of my life? Was I going to go back to doing the things I always did (with Dr’s permission of course) or was I going to be afraid. I promised I wouldn’t be afraid.
Easier said than done…………..
I was doing really good in the beginning. After I healed and felt stronger, I told myself “oh I’m going to be fine” “this isn’t so bad” “I’ll be doing all the things I did before in no time”.
After my shock back in March 2012, it changed my whole perceptive on that promise. Like I said in another post. I was afraid. I was afraid of everything. It was hard to tell my mind, my body is okay and I could do things again like drive, and start running.
My first hurdle was driving. Driving was something I always had a battle with. I wasn’t like all teenagers who knew at 16 wanted their license right away. Having deaf parents made me afraid of driving. Why? Well when one of my parents would drive they would be like any parent and talk while driving. However, my parents couldn’t talk, so they would have to sign with their hands. When they would do this, they would have one hand on the steering wheel and the other signing to me. I don’t know how many times I would sign “stop signing” “watch the road”. Some days I don’t know how we ever survived the roads hahaha. You would think I’d want to drive them around instead. But nope! I was not comfortable getting my license.
I was 18 when I decided to get my learners. I had my learners for 3 years and finally got my license. When I started driving, I couldn’t believe the freedom I had! I loved it!! I remember thinking why I didn’t get it sooner? Every chance I had I would drive, whether it was just to the store or long distance. I loved driving!
I couldn’t drive for 7 months after my collapse and it was very hard losing that independence. But I did get used to having DC drive me around. It made me feel safe knowing I wouldn’t be responsible hurting anyone on the road if I was driving. When I was cleared to drive, I was so nervous. I felt like I was 18 learning all over again. I called the pacemaker clinic a few times just to confirm I could drive again. They probably thought “oh goodness it’s her again” hahaha, but I was really nervous. What if I had a therapy while driving?? The best thing the Nurse said to me was “you’re the safest person on the road, you get a 16 second warning before you receive a therapy, others don’t have any warning at all, it just happens”. I remember thinking 16 seconds?? That’s not a lot of time, but in reality it actually is. I have been driving for the last 10 months now, and I’m not going to lie, at first I had anxiety if people were driving too close to my back bumper. What if I had to slam my breaks in a hurry and they would hit me? But I realized they would have to pay attention or hit me.
Running…….the second hurdle, just before Christmas, I was told by my doctor I could slowly start getting back into running. He said, I needed to have a heart monitor with a strap to monitor my heart rate. Also the beta-blocker I am taking my heart rate shouldn’t rise more than 150. I was so happy to hear this and was determinded to start running. So I thought I should start doing Yoga first to help the breathing. I did Yoga for three months. During that time I had researched all kinds of heart monitors. I didn’t realize how many there were and which ones I couldn’t use because some of them have magnets inside them. I decided to call St. Jude Medical (the company who made my ICD) to see what they recommended. They told me the ICD I have they tested with the Polar heart rate monitors. So I went and bought myself one.
I thought I had the breathing down pretty good, so I started to run. My first time running was so exhilarating! I did what the doctor said started off slow. I used the Couch to 5K app like I had two years ago. I was doing great! In the first two weeks of three days a week running, I decided to register for a 5K run in June. My daughter C is joining me for this run.
After the fourth week of running, I could tell the running was getting harder. The runs were getting more intense with running longer and walking shorter. It was really hard. I could feel my heart race faster, but I would check my heart rate often and it was fine. The next week I decided to go back a week and make it easier for myself but when I started to run I looked at my heart rate and it jumped to 162! It scared me! When I was controlling it between 115-130. So I stopped myself and stood to breathe and relax myself. Once I had gotten it back down I tried again but I would constantly watch my monitor.
The next run that week I followed the run on the app but found it was still too hard. So I decided to use a timer. I decided I would run 3 mins and walk 1 min. The first time I ran the 3 min walk 1 I thought I was doing great, I was controlling my breathing and my HR(heart rate). The second time I went I noticed that my HR went to 167! I started to get nervous and tried slowing down and it was good. My third time running was not so good. My mind was already playing tricks on me. My HR jumped to 172! I stopped immediately! I sat down on the ground and started breathing in and out to have the rate slow down. It went down but I was scared to start running again so I walked the rest. The fourth time I went, I was nervous. I didn’t want my HR to go up again like last time. So I took my time on the pace and was breathing in and out. However, that day was the highest my HR went since my collapse. It went to 185! That really scared me. I stopped sat on the ground again. Being at 185 was not far away from being at 200 when I would receive a therapy. When I got my HR down I decided to walk the rest again.
I thought I should see if the heart rate monitor strap was right. Maybe it wasn’t going as high it showed. So I did a home transmission to see how right it was. I sent the transmission and got a call the next morning from the pacemaker clinic. The nurse said she had looked at my transmission was very concerned. I told her, I had started running and bought a heart strap wanted to see if it was right. Those four HR’s were right, in fact she said it was bang on! she said she needed to send it to the Doctor. Right at that moment I thought uh oh! They are going to tell me that I can’t run anymore. When the doctor called me back, he recommended I try to control my HR going no higher than 150 or I will no longer be able to run again. He suggested I start slower like walking or speed walking until I figure out how to control the breathing and HR.
Since then, which is about three weeks ago, I have tried to run and control my HR. Unfortunately it is not staying low enough. But I am determined to continue. My mind isn’t helping. I had mentioned I registered for a 5K run and it’s this Saturday. I decided I am going to do what I can, whether I run a little, most of it or walk it. As long as I am doing it and having fun, that’s the most important to me now. Telling your mind to not worry about things your body does is difficult and it’s something I have to work on.
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……….
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………..