livingwithbrugada

Even more terrified than ever, I went back to Jewish Rudd Heart and Lung Center for the procedure. They were awesome and several of them commented on how young I was to be having this procedure. Still most of them were unfamiliar with Brugada and I had to explain the reasons why 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 did warn me before hand that I would not be completely under. This way, they would not have to intubate me. She said recovery would be easier as well. She also told me that there were horror about patients waking up during surgery but assured me that I would not remember anything.

However, I do barely remember feeling them push the leads through the veins. I don’t remember the several times that I told them how painful it was (thank goodness). The anesthesiologist told me that 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 that they were just fine. Back to sleep I went.

However, I did have a substantial amount of pain when I woke up in recovery. Afterwards, they explained to me 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, the better muscle tone  you have and it is more painful. I was sore for about two weeks. Now, I barely notice it.

My kids were tested. My daughter actually wore a halter monitor home and my son had an EKG. Both were tested by Brugada specialists. So far, both tested negative.

I’ve been fortunate enough that it has not had to shock me yet but it has saved my mother’s life (she had hers put in a year prior).

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 go ahead and 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 a bit of time to think about it.

Eric was a bit shocked that I even had to think about it. I had been doing research all along about Brugada. I looked at the fact that the mean age of death was 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 didn’t want miss out on all of the big changes in their lives as adults. I already knew that by deciding to finally go see Dr. Springer, that I had already made the decision to have the surgery. I already knew that was the only option. The next day, I called and scheduled surgery.

A few months passed and I was on a trip to Indianapolis for GenCon. After and 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 on a regular basis. 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 a couple of normal beats.

When I got back to Louisville, I finally went to see my mother’s heart doctor. Dr. Springer tried to assure me that I was fine and I had nothing to worry about. He sent me home with a heart monitor that 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 that I didn’t have any 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 decided to run a procainamide infusion test to see if my heart would behave with a Brugada pattern. He explained that 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. All kinds of thoughts of my heart doing into arrhythmia that it could not recover from went through my head. The only reason, and I really 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 all of 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 didn’t know much about this study or Brugada Syndrome. That didn’t help 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 that 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 all of the wires that 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.

I was having my physical with my family doctor. Dr. Siraj Saddiqi 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, my mother’s cardiologist. Mom’s genetic screening had not come back yet so I was unsure if I really had anything to worry about at all. All of the tests from my previous hospital stays had convinced me that nothing was really wrong. I was in denial and refused to go see Dr. Springer. Appointment and appointment with Dr. Siddiqi, he asked me if I had gone. My reply was always, “No, I’m not having problems anymore.” Full denail? Absolutely.

A couple of 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. Dr. Springer went ahead and installed the defibrillator.

After a couple of years of waiting, her genetic screening came back positive for Brugada Syndrome.

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 started having the same symptoms. The doctor’s told her that it was most likely a side effect to the medications she was on for her breathing. They did decide that her heart had some damage so they put her on a couple of 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 happened to be a specialist in Brugada Syndrome and noticed a pattern in her EKG. He recommended my mother see Dr. Michael Springer.

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 of 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 fine. They felt that the difference in the EKG was just something specific to me and 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 back yet.

It was early in the 1990′s 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 some chest pain with a fluttering feeling. I tried to pass it off thinking that it was just my imagination. I was too young after all. 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 as if 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 did pick up the flutter that I thought I was my imagination, and the fact that my heart rate would surge to around 150 beats a minute at three in the morning, when I was sound asleep. (At least that’s what I think it was. My mind remembers 250 beats a minute but I think that’s impossible. It’s been a while.) 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 some of the nerves to fix the incorrect electrical impulses but they couldn’t determine where it was coming from. I was eventually weaned from both of these medications since they had no effect on 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.