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 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.
When I last left you, I was in the hospital…………….. doctors had requested some blood work, what they called Blood Gas, it’s supposed to check your blood levels and they have to draw it out of your main artery. Which hurts because they took it out of my wrist.
The Doctor said they were keeping me over night for observation. I told them that they didn’t need to keep me over night, that I was fine and that I just fainted. The Doctor held my arm and looked at me, said “No you didn’t just faint, you suffered Sudden Death”. I just sat there in the hospital bed in shock. Just thinking to myself, really?? Sudden Death?? I really thought I just had fainted. The Doctor then said that I was going to see a Cardiologist in the morning, to see what we should do next.
I won’t lie, trying to sleep in a hospital is not easy let alone try to sleep when all of this happened. I was in shock still and they gave me a sedative to help me sleep. However, I had so much adrenaline that the sedative didn’t stay down. The nurse said that I had an allergic reaction to the sedative. I was actually scared to sleep, because I thought if I had supposedly suffered this “Sudden Death”, who’s to say that if I go to sleep and I don’t wake up? It actually took me a few days before I could sleep and when I did sleep it was every 2-3 hrs so it wasn’t all that great either but it was some rest.
The next morning the Cardiologist came in and discussed what he thought and clarified it to Sudden Arrhythmia Death Syndrome. He also said that I was a “miracle” because only 1% of the population get this and out of that 1%, less than 1 % survive. Well talk about shock! plus I still couldn’t get over the fact that I had “died” so to speak. So that evening they airlifted me to another hospital. I was airlifted to another hospital because the hospital I was at didn’t have all the equipment, for Cardiologists to do intensive testing with my heart. That was the first night I spent by myself with out DC and K. I must admit it was really hard not to have them there, since they hadn’t left my side. I didn’t sleep well that night.
In the morning they already got the intensive testing started. I was so nervous because DC and K weren’t there right away, they had to drive, it was going to take them 6 hrs and I wasn’t sure exactly what they were going to do . My first test that they did was an angiogram. I have heard of angiograms before because my grandmother had this done. She told me that they went in her main artery in her leg, and in her arm, well when I remembered that, I was so scared! Scared that it was going to hurt! No matter how many needles I have had, I still get scared of them. The nurses told me what exactly they were going to do, that they were going to freeze my wrist and use the main artery. Then they were going to put a tube up with a camera and dye to see if there were any blockage in the heart. Well let me tell you, I think that I would have rather had my three kids, open heart surgery and the Blood Gas done again instead! It was so painful! I couldn’t feel the poke but I could feel the tube go up my arm to my heart. After they did it I remember thinking to myself, wow! my grandmother did this three times??? twice in the arm and once in the leg!! I knew I had more respect for her after that!
The test results of that came clear, had no blockage at all. Thank goodness! On to the next test!!
What my arm looked like after the angiogram, the top picture was when they took the plastic bracelet off to keep the pressure on my artery and bandaged it up, the bottom one was when they took the bandage off.