'It's all in your head' - My Survivor Story
Good morning. I have just joined this group. When I was a teenager I would pass out, be light headed and everyone had always just said it was due to teenagers and diets. I was not dieting because I was already skinny. Back in those days there was not the medical technology to diagnose problems.
Fast forward to 2010 and living in Buffalo, NY for a psychology degree. My heart had been having fibrillation for years. I would just try to ignore it. I noticed that my heart would skip or try to stop, go into a-fib and then throw me into a migraine. The migraine would cause me to vomit, which would cause my heart to beat strangely again, which would cause my head to pound and vomit again thus starting the vicious cycle over again. I went to the hospital numerous times, receiving fluids, Imitrex, in which I had an allergic reaction to and always being sent home without a diagnosis.
Finally, my doctor referred me to Dr. John Cai at Mercy Hospital in South Buffalo, NY. After wearing a heart monitor multiple times and undergoing a treadmill stress test, he decided that he would do a heart ablation. He thought that it would be a 'simple' fix. After the procedure, Dr. Cai came to my husband and I with the report that he couldn't believe how much mapping had to be done and to the degree of the atrial fibrillation ablation that had to be done. He declared that he 'fixed' it and that there will be no more episodes.
Still feeling the same degree, I returned and he said if it was still having problems by six months out, then he would do it again to get anything that he may have 'missed'. He tried beta blockers, which made it worse. I tried to tell him that my heart would skip or try to stop and then go into tachycardia and not knowing what rhythm it should continue, it would go into atrial fibrillation. The beta blockers were not good and my husband woke up to a very ice cold (he thought that I was dead) wife lying beside him, unresponsive. He shook me until I came to. I refused to take the beta blockers any longer and Dr. Cai scheduled another ablation six months from the first. I was still in the procedure when the doctor came out and told my husband (after six hours) that he had to stop because I was waking up during the procedure and there was still a right ventricular tachycardia that would only take 45 minutes to complete and he would have to take care of at a later date. My husband said that he was scared something happened because of the panic stricken look on his face and he was sweating profusely. After repeated appointments with the cycle still occurring, the doctor decided to not do the procedure but insert an internal loop recorder through St. Jude and monitor the situation. Do to having to relocate for a job, I left his practice and moved to Elmira, NY.
Here I encountered another electrophysiologist, Dr. Levine, who would just take the readings off of the loop recorder and not really listen. I even had an episode where my heart stopped during the day while at work. I had Trigeminy and Bigeminy, Tachycardia, Bradycardia and PVCs. He said that he was waiting for me to have a synoptic episode where I would pass out. I never did and was getting very frustrated and asked for a consult about a pacemaker/defibrillation device insertion. They refused and the monitor was coming to the time when the battery would run out so I asked for a removal. It was completed and I gave up.
I had to move again for another job position back to Buffalo, NY. I went to a cardiologist at ECMC believing they were the best in trauma care. The doctor there, Dr. Pia, said that it wasn't a 'plumbing' issue but an electrical one. She suggested for me to go back to Dr. Cai because he had done the mapping previously. There was no way that I would go back to him and she would look for someone else for me. Continuing to feel the same things, I just went on with life. Soon it became evident that the episodes were longer and scarier. I did not tell my husband as he became frustrated because he was concerned. He would get mad and yell about it. It was just how he handled that doctors would not listen. After two years here I had an episode that lasted over three hours in a fib to where I thought I was going to pass out. I called my doctor and inquired whether they wanted me to go to urgent care, their office or the hospital emergency room. They said to call 911 and go to an emergency room. I said that I would take the bus and I did.
I finally made it to the Buffalo General Memorial Hospital and almost left because I thought that they would do the same thing. I felt that there were many others there that day that needed care and due to the past treatment I began to feel that it was hopeless anyways but then they called my name. I text my husband telling him that he should go home and I would be there in a couple of hours. They came back with the results that my markers were high and they were keeping me. I had to text my husband and spent the next few days undergoing testing. During my hospital stay they were trying to get me to take beta blockers and I refused due to the cyclic problems. I informed them that I would not take them when they would just stop my heart and that is what starts this every time. My heart tries to stop, my brain says beat, and my heart goes into to tachycardia, and then, not knowing how to beat, goes into a fib and quivers. Time and time again I would explain this. I was put on Lipitor and discharged with a follow up appointment with Dr. Hiroko Beck.
The first appointment was instrumental and I went home with instructions that I would receive an external recorder and to wear it for a month. I did and returned it via her instructions just before the appointment. I knew that I had many times of the episodes to varying degrees. Upon meeting with her, she scheduled a surgery. She saw where my heart stopped and the tachycardia episodes. When in there she said that she would probably put a pacemaker in there. Upon awaking she explained that my heart was doing this all throughout the procedure. She stated that she was very surprised that I had been walking around all this time. She continued on to explain that I had 'heart block' and atrial tachycardia, which she fixed and inserted a pacemaker with an ICD. She said that I was very proactive and smart to refuse the beta blocker and that she wished other patients knew their bodies like that. I am alive because of God and this doctor. Please don't ever give up! What you feel is real! If you don't fight for yourself, no one will. This is my heart story. <3