|Posted by Lynn Tincher on August 8, 2017 at 11:45 AM|
It was early in the 1990s, when I was about twenty-three, I noticed as I walked up the small hill between my house and my in-law's that I had chest pain with a fluttering feeling. I tried to pass it off thinking it was just my imagination. I was too young. As the evening wore on, the fluttering worsened. With my husband's insistence, I went to the hospital. By the time I arrived, the fluttering had stopped, and everything seemed normal, so they sent me home. "It's probably anxiety," they said.
Weeks went by where the flutter would happen on and off. Sometimes it would take my breath away; causing me to suck in my breath like the wind had been knocked out of me. The best I could describe it was that it felt like a butterfly in my chest or it felt like when I was pregnant, and my children would roll over. I finally gave in and went to my family doctor in Corbin, Kentucky. He recommended that I go to a Cardiologist. His recommendation was to wear a halter monitor home for a few days. I did. The results were unbelievable. It picked up the flutter I thought I was my imagination, and that my heart rate would surge to around 275 beats a minute at three in the morning when I was sound asleep. The doctor told me that would have awakened an elephant, yet I had no memory of anything happening. Something was wrong. Test after test, echocardiogram after echocardiogram, and doctor after doctor told me that everything seemed structurally perfect. I was diagnosed with arrhythmia. After some deliberation, it was decided that my heart was not receiving the correct electrical impulses. I was then put on Lopressor and Lenoxin. One was to slow my heart down and the other to regulate the blood pressure. Well, I had issues with that. My blood pressure bottomed out. There was talk about possibly having surgery where they would burn nerves to fix the incorrect electrical impulses, but they could not determine where it was coming from. I was eventually weaned from both medications since they did not affect the flutter. I gave up, and for a few years, nothing else happened. At least not that I could feel. I thought I was okay.
Eventually, I moved from Corbin and back to the Louisville area. For a long time, I had no other issues. A few years ago, while in the hospital for her asthma, my mother had the same symptoms. The doctor's told her it was most likely a side effect of the medications she was on for her breathing. They decided that her heart had damage, so they put her on two heart medications. What medications, I'm not sure.
The next time she was in the hospital, the same thing happened, so they put her on different heart medications. Finally, the doctor on call in both incidents had just come back from a seminar on Brugada Syndrome and noticed a pattern in her EKG. His name is Dr. Michael Springer and he decided to take her on as a patient.
Not long after that, I was back in the hospital. I went to Baptist East with the same symptoms. They ran tests, and I did a stress test. All their heart specialists said that everything looked fine. I asked them about Brugada and that my mother was being tested for it. No one had even heard of it and I was dismissed as okay because my stress test was fine. They admitted to seeing a different pattern in my EKG but because it didn???t get worse during the test and they felt I was okay. They felt that the difference in the EKG was just something specific to my heart. I told them about Brugada and how they needed to find out all they could about the disease. However, my mother's genetic screening was not in yet.
I was having my physical with my family doctor. Dr. Siraj Siddiqi was the physician for my entire family. He looked at my EKG and came back in to tell me that the pattern in it was the same as my mothers. He was concerned and thought I needed to talk with Dr. Michael Springer. Mom's genetic screening had still not come back yet, so I was unsure if I had anything to worry about. The tests from my previous hospital stays had convinced me that nothing was wrong. I was in denial and refused to go see Dr. Springer. Appointment after appointment with Dr. Siddiqi, he asked me if I had gone. My reply was always, "No, I'm not having problems anymore." Full denial? Absolutely.
Two years later, Mom had enough visits and tests with Dr. Springer that it was decided that Mom most likely had Brugada Syndrome. Not long after, Mom had surgery to have a defibrillator installed. Shortly after that, her genetic screening came back positive for Brugada Syndrome.
A few months passed, and I was on a trip to Indianapolis for GenCon. After an exhausting day, I had another flutter attack just before I went to bed. This one was severe enough that my heart felt like it stopped for a few seconds regularly. My husband listened to my chest and said that he could hear the same thing I was describing. It sounded like it would pause beating after two normal beats.
When I got back to Louisville, I finally went to see my mother's heart doctor. Dr. Springer tried to assure me I was fine and I had nothing to worry about. He sent me home with a heart monitor I had to wear for a month. I had to fight with the insurance company to get to use it. Blue Cross and Blue Shield explained it as an exploratory thing that I had no true need for it. But the company that manufactures and monitors the system (LifeWatch) worked with me and fought on my behalf. I only had to pay $200.00. I am forever grateful for them! The analysis confirmed that I was having several bouts of irregular heartbeats, both tachycardia and arrhythmia. Dr. Springer then ran a procainamide infusion test to see if my heart would behave with a Brugada pattern. He explained this was due to a sodium channel in the heart and not the electrical impulses. The procainamide infusion would show a certain pattern in my EKG if Brugada Syndrome was the culprit.
Terrified, I went to Jewish Hospital. I was scared to death at the thoughts of being injected with a solution that could affect my heart. Many thoughts of my heart going into arrhythmia it could not recover from went through my head. The only reason, and I mean the only reason, I went through with it was because of my kids. I knew this was genetic. I knew it was possible that they had it. While going through this might not help me, it may help my kids, grandkids and so on.
While the nurses at Jewish Hospital Rudd Heart and Lung Center in Louisville were great, they knew little about this study or Brugada Syndrome. That toyed with my nerves. They assured me that Dr. Springer did and that I would be in great hands. And I was. The test was easy. The only problem I remember was that at one point, barely into the test, I felt hot and like I would pass out. I told them it was probably nerves. Since they all laughed at that, I felt better. They watched me like a hawk and took care of my every step of the way.
In the end, Dr. Springer said that he had good news and bad news. The good news was that I now finally knew what was wrong with me. The bad news was that my heart behaved exactly that way a heart would with Brugada Syndrome. Within minutes, my husband walked in. The nurses were still removing the wires I was connected to. I looked up at Eric and said, "It's not good." Dr. Springer, who was standing at my bedside, patted my hand and told Eric about the results.
My first doctor's appointment after the procainamide test still came as a shock. All I could think of was how my mom was tested, studied, poked and prodded to find out what was wrong. The first conversation I had with Dr. Springer after my first test threw me for a loop.
Between my test and my next appointment, Dr. Springer had gone to a conference with the top specialists regarding Brugada Syndrome. He had presented my case to them. After debating the results and my genetic connection, it was a consensus to offer me the only solution available; to install a defibrillator. My initial reaction was total shock. How could I, after only one test, be facing surgery? However, he left the decision up to me. I told him I needed time to think about it.
Eric was shocked that I even had to think about it. I had been doing research all along about Brugada. I found that the mean age of death is 41, and I was already 42. Again, I thought of my children. Even though, by this time they were grown, it hit me. I wanted to see my grandchildren. I did not want miss out on the big changes in their lives as adults. I already knew that by deciding to finally go see Dr. Springer, that I had decided to have the surgery. I already knew that was the only option. The next day, I called and scheduled surgery.
Even more terrified than ever, I went back to Jewish Rudd Heart and Lung Center for the procedure. They were awesome, and several commented on how young I was to be having this procedure. Still, most were unfamiliar with Brugada, and I had to explain the reasons surgery was needed. They took good care of me and reassured me that everything would be fine.
They put me in twilight sleep. The anesthesiologist warned me ahead of time I would not be completely under. This way, they would not have to intubate me. She said recovery would be easier. She also told me there were horror about patients waking up during surgery but assured me I would remember nothing.
However, I do barely remember feeling them push the leads through the veins. I do not remember the several times I told them how painful it was (thank goodness). The anesthesiologist told me I had done that several times. My first real, clear memory was coming out from under. I remember someone telling me that Dr. Springer was there. I remember that the first words out of my mouth were, "My kids are being tested right now. You may be contacted." I remember Dr. Springer patting my arm and telling me they were just fine. Back to sleep I went.
However, I had substantial pain when I woke up in recovery. Afterward, they explained that the surgery was harder the younger you are. They make a pocket in the muscle to house the defibrillator and the younger you are, and the better muscle tone you have, it is more painful. I was sore for about two weeks. Now, I barely notice it.
My kids were tested. My daughter wore a halter monitor home and my son had an EKG. Both were tested by Brugada specialists. So far, both tested negative.
Categories: Living with Brugada Syndrome