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……….

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for granted

I know everyone has taken things for granted.  You all know it’s true, we have all done it. It can’t be helped! We just tend to forget what is important until one day something or someone has affected your life somehow to remember.

As you know, I am learning to live with this ICD everyday. I have read my “manual” so many times to make sure what I am allowed to do and not allowed. I am finding it difficult because I am constantly trying to remember what items have magnets in them.    Magnets????   Yes I said magnets….

I didn’t realize how many things have magnets inside them.

In my “manual” it reads;

General Precautions

Any electrical equipment, appliance, or machine that you use should be in good working order and should be properly grounded. Do not carry magnets or products containing magnets close to your ICD. Avoid holding motor-driven appliances and machine-shop tools closer than necessary to your implant site. When working with tools or appliances, be careful in situations where you could be injured if you become dizzy or receive a therapeutic shock from your ICD. (in a nutshell everything must be properly grounded)

Home Appliances

Assuming they are in good condition and properly grounded, the following items are safe to operate:

Kitchen appliances, including microwave ovens, can openers, blenders, toasters, electric knives. Televisions, VCRs, personal computers, AM/FM radios, remote controls, garage door openers. Major appliances, including washers and dryers, electric stoves, refrigerators, etc. Electric blankets, heating pads.

Avoid holding the following items closer than necessary to your ICD

Hand-held appliances with motors, such as hair dryers and shavers, light shop equipment, such as drills, table saws etc. Transmitters for radio-controlled equipment or toys.

It is generally safe to work around spark-ignited internal combustion engines, such as lawn mowers, leaf blowers, automobiles, etc but limit your exposure to ignition-system parts when they are in operation.

Office Equipment

Most office equipment is safe to operate as long as it is properly grounded and in good working order. This includes computers, electric typewriters, fax machines, pagers and copiers.

Security Systems

Metal detectors and anti-theft systems used in airports, stores and other locations create electromagnetic fields that can interfere with your ICD. Anti-theft systems or Electronic Article Surveillance (EAS) systems such as those used at the entrance/exits or checkout counters of stores, libraries, banks, etc. emit signals that may interact with ICDs. To minimize the possibility of interaction, just walk through the entrances/exits of these establishments at a normal pace and do not linger in these areas. Metal detectors; walking through the metal detector archway will not harm your ICD, however be sure to pass through the archway at a normal pace and avoid lingering in the immediate area. Your ICD has metal inside that may set off the airport security system alarm. If a search with a hand held wand is performed you should stress to the security personnel that the search should be performed quickly and that they should avoid holding the wand over your ICD for a prolonged period.

Industrial Equipment

Large industrial equipment, such as generators and electric motors often generates strong electromagnetic fields that can interfere with your ICD. Avoid standing near large motors or other electromechanical equipment. Make sure that the equipment is properly grounded before working near it.

Medical Equipment

Although most medical equipment will have no effect on your ICD, some may affect its function. Always tell the doctor or nurse that you have an ICD.

The list keeps going on and on, I am not going to type everything and I think you get the picture.

These are a few things that I have taken for granted:

1. When I would go to the airport. Whenever I would go somewhere I didn’t think twice about the security portion of walking through the scanner. Well now, even thou the “manual” says I can go through the archway, my Doctor suggested I didn’t go through because my ICD can set off the alarm. So now I have a pat down every time I go. I have this lovely bright red laminated card that says in capital letters: I HAVE AN IMPLANTABLE DEFIBRILLATOR that I have to carry with my passport. I have learned to appreciate the security personnel more because they have to do their job to make sure we are all safe and yes sometimes it is annoying and takes up time, but I would rather take the time to make sure we are all safe. So the next time you go to the airport and see someone get a pat down try to remember that it’s for your best interest and that it’s not all that fun for the person who is being pat down either.

2. The cell phone. Yes, the cell phone haha. I had to train myself not to use my cell phone on my left ear, it can interfere with my ICD. I also had my cell phone in my purse that I carried on my left side. It was just natural for me to wear it there. But since the implant I was told that I wasn’t allowed to have my cell phone near my ICD. I know this might sound silly but I know you ladies out there will understand, when you have worn your purse on the same side since you started wearing a purse and you put it on the opposite side?? WELL!! that was just so hard for me to get used to! It’s been 10 months since I had my implant, and I have gotten used to wearing my purse on the “right” side now. I even tried wearing my purse on the left side (without the cell phone inside) and it felt weird! haha guess after wearing my purse on the opposite side for 10 months isn’t so bad after all! Oh! Ear phones are another that I cannot have dangling around my neck it can interfere with my ICD. As I said the list goes on! and this is why I said it is difficult to remember all these things but I know in time I will remember what will interfere and what won’t.

I am trying everyday to live “normally” but some days are hard when you know things may just put you in a position you don’t want to be in.


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………….


something foreign

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.