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……….

Advertisements

mind over matter

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”.
Ya……right….
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.


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……….