Nov 12
MicheleLee , Posted on SUPPORT NETWORK Blog

Cardiac Electrophysiology

How do you begin to share your story?  It is a roller coaster ride that I was forced onto nearly six year's ago. At this point in time I am a research patient at the University of Miami Miller School of Medicine. There is no name for my condition. I fall under paroxysmal supraventricular tachycardia with ectopic beats. The doctors have never seen all of this and its symptoms in a person. I am not alone. My very young nephew is diagnosed with this as well. Largely my whole family has some sort of heart condition. My aunts and uncles all gone from heart attacks. I do the tests, I take the medications and yet nothing works. I had a failed ablation. What is going on inside this heart of mine that is rare? I have a three extra electrical systems in the upper part of my heart touching the phrenic nerve. When my heart decides to use them it paralyzes my diaphragm which incapacitates my lungs. I lay where ever I have fallen and wait for the episode to pass all while I cannot breathe. Beta blockers, calcium channel blockers and all the medications in between make me ill. Nothing has worked. I press on. Every day I try to stay positive. It becomes heavy on my mind knowing that to these doctors I am just a number. A puzzle they do not want to put together. I will never give up fighting for the help I so desperately need. Share your story... This is mine.
  • justme2
    have you tried Jesus Christ he can do what no one or what doctor not know and I pray for you both
  • lildebadoo1966
    Hello, I just read your story and wondered if you live in FLorida or here in Rochester NY. We have a wonderful hospital here that specializes in the heart. I had a wonderful "team" of doctors. Its Rochester General Hospital...on Portland ave here in Rochester NY. I had a heart attack this past February at 49 years old. I have one stent , that was horrible and the scariest moment in my life. I cannot imagine what you are going through. I just thought I would put this out for you..I do hope you get relief. Sincerely, Debbie
  • thedollhouselady
    Dear MichaelLee you are not alone when you say, "It becomes heavy on my mind knowing that to these doctors I am just a number". I have heart block due to malfunction of my hearts electrical system. a pacemaker has helped somewhat but there's still something wrong and the doctors ignore everything I try to tell them. I now realize that they don't know about anything out of the ordinary. I believe that doctors aren't being taught right. the pharmaceutical companies own the medical schools and all they teach is the use of drugs because that's where the money is. as more people begin to realize that something is wrong with Western medicine (pharmaceutical companies) we need to talk to each other as you and I are doing here and find other ways to take care of ourselves or find the good doctors who have private practices. you need a good doctor who doesn't work for big hospitals that set quotas for doctors to meet to fill their beds and sell drugs. since your condition is so unusual maybe you can get in touch with a more knowledgeable doctor, someone like Dr. Oz, who could offer more help. I hope you can find out how to see Dr. Oz. God helps those who help themselves but if so then I wonder why are we paying so much money to all the unhelpful doctors
  • mingo1
    Hello. I want to share my story with you. While I do not have your same problem, my electrical system is certainly screwed up. I had a LAD widow maker in 1993 and a defibrillator implant 3 months later. I took many months to feel right again and not scared all the time. I did not receive my first shock for about 4 months. While it hurt like hell for an instant, my heart went back to normal rhythm. Since that time, I have had many, many shocks with over 20 in the same day. However, four ablations have helped a ton and have not had a shock for almost a year. I do have constant premature ventricular contractions (PVC's) and each one is not what I would like, but they go away quickly. Over these many years I have learned that I am very lucky that I had the right doctors and that my higher power must want me around. My family and especially my wife are just fantastic. I know that I have to keep hydrated for sure and keep very busy. Busy does not mean that I have to run a mile or work out for an hour. Just taking out a coloring book and coloring for hours is wonderful. I just think about staying in the lines and after a month did not have the idea that I was in the 5th grade again. Take a look at these coloring books. Over the last year, they estimate the number of coloring people have increased by 14 million people. Doctors, phycologists, care givers and many others are really supporting this hobby. I have been living with a 28% heart EF since 93' and thank God, my family and great doctors for all the care they have given me. Be sure that you see an Electrophysiologist heart doctor and not just a cardiac doctor. If you have great. I you have not and live in the Phoenix area, please let me know. I have one of the best in the world. He may even give you a colleague of his as he is well known. Hang in there and write more if you think it helps. I will always answer if I see the blog. Happy Holidays my friend.
  • MicheleLee
    Thank you all very much. I do live in Florida. My every day cardiologist is great. I have had the radiofrequency catheter ablations done. Due to the nerve being so close the next suggested step is cryoablation. I'm hoping that does not bother the nerve. I have seen many electrophysiologists here in Florida. Each one not knowing how to proceed or simply afraid to do the cryoablation for fear of hitting the nerve. I offered to sign for permission to do such a surgery. I wound up finally at Miami for research and the team of doctors there seem more interested in testing me than helping me. I asked them about having a defibrillator put in. Thus far the answer is no. My current heart EF is 68% and that is just insane.My nephew and I are both having really bad reactions to all the heart medications which is frustrating. My heart for some strange reason hits highs of 176 while I am sleeping. I pray every day for divine intervention. Any suggestions are welcome. I have just started to become an advocate for heart health. My goal is to make these types of heart conditions common knowledge to emergency room staff, nurses, RN's, emergency room doctors and all hospital staff. I would love to speak to everyone in these types of situations to help unite us all in moving forward together. Thank you for reading and more so for the comments of support. What are we without each other?
  • ActiveLarry
    Amazing story. Blessed to be here. Perhaps you and your son will be the ones to help doctors understand the condition. It is very humbling for me to have something so much simpler, and survive. Life is so delicate, precious. In my prayers
  • YukonDenis0n
    My neighborhood buddy has a similar condition as does her sons. She finally got a referral to Mayo Clinic for some kind of ablation evaluation. I hope for your speedy recovery!
  • cdameron
    Michele, knowledge is power and your mission to share knowledge will certainly help others. If you haven't found My Heart Sister's org I encourage you to read some of those posts. Carolyn Thomas is a delightful resource and will reply to questions and your concerns. She may have some ideas. In the meantime I will do what I do and add you to my prayers for strength and healing. Best to you!
  • BrendaDnNC
    There is a doctor at UNC Hospitals (Andy Kaiser) who has developed a unique ablation procedure that works in a-fib patients for whom standard treatments (including traditional ablations) have failed. Pat Robertson, the televangelist, had it and it has helped him a great deal. Look up Andy Kaiser and try to arrange a consult with him. He might be able to help? (I know about this because when I was working, I wrote an article about him and the procedure, and go to interview Robertson about it.) BrendaDinNC
  • Mel-WI
    Thank you for sharing your story. You are very courageous and such a strong woman. I think what you are doing to be an advocate for yourself and nephew is outstanding. Too many doctors are willing to give us medicines with terrible side effects that do little to nothing to help & simply give up. I am currently struggling with issues of sorts like that in my life. I will keep you in my prayers so that you & your nephew find a treatment & answers. Sincerely,javascript:; Melissa
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