It is no secret; I have gone through the wringer and back repeatedly. Tragic events in my life have always shown me the inner beauty in life. At times, I wish that everyone could see the inner beauty of a tragedy. I know that I am a walking miracle. I have looked death in the face several times in my life and survived. At the time, I did not realize what I was looking at but I do now.
For the majority of my life, I had many problems sleeping. I would wake up without sight, and the added bonus of migraines and seizures. When I was little, I would explain it as a headache this big (opening my arms as wide as I could). When I was 14 or so, it started happening more frequently. Once I turned 18, it started to happen every month. Always really bad dreams, then something really peaceful, then screaming, and an awful headache.
In basic training, I would wake up in the middle of the night not breathing. Eventually, I would gain control and fall back asleep however, not before freaking every one out in the barracks. I made it through basic and AIT then went to Ft. Carson, Colorado. My commander in the military thought I was on drugs. I went to every doctor; a neurologist, internal medicine, heart doctor. None of them could explain what was wrong with me. I had EKG’s, ECG’s, and sleep studies but apparently, nothing showed up on any of the tests. Did I mention I also had numerous drug tests that all came back negative? Before I got out of the Army, the diagnosis was a seizure disorder. I remained under the care of the same doctors because I was also married to a soldier.
The episodes would take me a couple of days to recover. Eventually they prescribed me a seizure medicine and it seemed to do the trick. When I was pregnant with my first child I could not take the medicine, but I never had any problems. As soon as she was born, within 2 weeks I started having the “seizures” again. Soon after, I moved to Illinois. I met with another neurologist and told him what the military doctors said, gave him my medical records, and he continued to prescribe me seizure medicine.
I was seizure free the whole time I took the medicine. Then I got pregnant with my second child and had to stop taking the medicine. Not once did I have a seizure the whole pregnancy. As soon as he was born within a month, they came back. I started taking the medicine again. I was seizure free for the next 11 years and during that time; I went through my first battle with breast cancer.
When you get cancer and you are a woman one of the first questions they ask is if you are finished having kids. I most certainly was. Therefore, they gave the basic chemotherapy. Chemotherapy has the potential to kill all of your eggs. The doctors tell you that you will not be able to have children anymore. The chemotherapy and radiation were tolerable. I never puked or lost weight. The radiation gave me minor sunburn.
Six years later, I was pregnant. I stopped taking the seizure medicine and never had a problem the whole pregnancy. This time I was very cautious about waiting too long to re-start the seizure medicine and I never had a seizure.
Then a year later, the seizures came back at a vengeance. They were not just in my sleep anymore. They were not seizures. I went to my neurologist and explained to him what was happening and he immediately said that they were not seizures and took me off the medicine. He sent me to a heart doctor. I started having tilt table tests done and a whole bunch of new tests. Before I could finish the tests, they increased.
One day, I was running the power point presentation during a church service. I started to feel faint and just when I heard John 11:43- When he had said this, Jesus called in a loud voice, “Lazarus, come out!” I fainted to the floor. The next thing I know I am practically laying under the desk and all these people are trying to help me. I did not want to go to the hospital. I hate the hospital. Therefore, I went home. Later that evening, I collapsed a couple more times. I finally caved in and went to the hospital. I thought this was ridiculous because they can never figure out what is wrong with me.
While I was in the emergency room, I kept fainting while I was lying down. As soon as I was back to normal, the doctor would come in, check my pulse and listen to my heart and heard nothing. I think that happened three times. Then finally, the doctor came in just at the right time and heard my heart and it did not sound right at all.
I did not realize this. Did you know there is a way, way, way, back in emergency rooms? I think it is where the more serious patients may go. They took me to this room and hooked me up to an EKG machine. There were resident students with me. Anyway, I could feel the episodes starting and was able to let people know. Usually, it would sound like a scared, “oh no.” I looked at the EKG and my heart rate went from 60 to 360, no kidding. I fainted, stopped breathing, and finally came out of it. They kept telling me to cough. Then funniest thing happened.An ecstatic resident came in the room. He was so excited. Then he walked up to me and said with a huge smile on his face, “we know what’s wrong with you!” You have long qt.
I actually have LQTS2. In my own words, this is what LQTS2 is. It is when your heart does not re-polarize. The top of my heart will stop beating and the bottom of my heart will start to beat extremely fast. It is a congenital heart disease. LQTS2 is emotionally stimulated. Sudden noises like an alarm clock or anything startling can send my heart racing. Athletics and exercise generally does not affect a person with LQTS2. Also, certain medications can cause it to happen. Usually a diagnosis of LQTS as an adult is because of sudden cardiac arrest and death. From my other research, this also causes SIDS (infants) and SADS (adults).
Obviously, there was no leaving the hospital. They admitted me and sent me to step down ICU. Here is a side note. If your heart is not stable, you cannot be in ICU. At least, at the hospital I was in. A doctor came in very quickly and said that I needed an ICD. Then he left. At this point, I really did not understand the severity of the situation because I lived with it my whole life and managed just fine. Therefore, I told Ben I was not getting an ICD. Then a nice, older doctor came in and again told me what was wrong with me. Then he said, like a father, in a stern voice. I cannot let you leave this hospital without an ICD. Finally, I agreed.
You have to be awake during this operation and it takes place in a special operating room. I was under drugs but you have to be awake to answer questions. Once the ICD was in, they asked me many questions. I do not remember them all. I do know that a technician was controlling my heart from a little box. It freaked me out. They wanted to make sure it worked. It does. Now I have a box in my bedroom that pulls reports from the ICD every Wednesday night. Then twice a year, I have to push the blue button to make sure it is working properly. I am the bionic woman. My husband gave me a shirt that says, “Built To Last.”
I was born with a congenital heart disease that should have killed me. The seizures were from lack of oxygen to my brain. My doctor told me a side effect to LQTS is anxiety. It’s because all the episodes of seizures were the beginnings of death and that is enough to cause anxiety. He said that after going through all the emotional and physical issues in my life, I am lucky to be alive and there is no doubt in his mind that divine intervention has played a huge role in my survival. It should have caused many problems during pregnancy. Three pregnancies put my life in danger…but remember I said that I never had one symptom. My symptoms miraculously went away. The chemotherapy drugs for breast cancer are on the do not take list for LQTS. The chemo drugs could have killed me. I-SHOULD-NOT-BE-ALIVE. I love divine intervention. I-AM-ALIVE.
Side notes: My children are Good Sparks!