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THE STORY OF MY LIFE WITH ATRIAL FIBRILLATION
I have been a freefall skydiving photographer for 30 years and my LAF grounded me. I thought my skydiving days were over In the last 5 years I have probably had 400 afib incidences, ranging from short periods of skipped , or “pre” heart beats, called “PVC’s” to Bradycardia, which means low heart rate, with a blood pressure of 70/40 and a heart rate of 41 and one occasion Atrial tachycardia, with a blood pressure of 80/palp, “palp” simply means “unreadable” and a heart rate of +200 I have had 2 Ventricular Tachycardia events, an extended one in the ER of one hospital and a rather short one, during an ambulance transport to the ER of another hospital. Both times I was given Lidocaine, which brought the heart rate down. Fortunately, I have never had to be “Electro-cardioverted“, which means being shocked out of it with the Crash Cart . My average "Atrial flutter" episode was an extremely irregular 141 to 158 heart beats a minute, with blood pressure anywhere from 125/85 to 80/palp Most times, depending on my whether my blood pressure was high enough, I would just go to bed and ride the afib out by sleeping. If it lasted though the night, and was there when I woke up, I could ALWAYS break it with certain exercises, which doctors refer to as the, “Point and Shoot Autonomic Nervous System influence“. When in atrial flutter and my blood pressure dropped, I would call the Emergency Squad. They would do an EKG and if it was ONLY afib, and my blood pressure was OK, I stayed home. If the BP was very low, the squad would start an IV and transport me to hospital ER, where they would hydrate me, by more IV liquid, until my BP was stable and I could go home to ride out the afib. In 2003 I had 37 events, 15 that were bad enough to call the squad, but only 4 that resulted in being transported to the ER. In 2004, up to July 20th, when I had the Wolf Mini Maze surgical procedure, at the University of Cincinnati Hospital, Center for Surgical Innovation, which cured my atrial fibrillation, I had 27 events, 12 that were bad enough to call the squad, with 4 that resulted in being transported to the ER. I am sure that I would have many more afib events, if I tried to live a normal life, but being retired on disability, I could afford to live an obsessively compulsive life style, focused on one target, STAYING OUT OF AFIB. I, like most other afib patients, lived a life of constant fear that, my next heart beat was going to put me into afib. I had forced myself to live an almost invalid lifestyle, studying about atrial fibrillation on the internet and using the information that I learned, to help avoid afib. My average daily blood pressure and heart rate was 125/80 @ 58 to 64 heart beats per minute. My morning "wake up" BP readings were extremely high but, very consistent, but very high. The morning peaking of my blood pressure has continued, even after the surgery that cured me of atrial fibrillation, but now it is a much lower peak, around 145/110 @ 75 heartbeats per minute and stables out within an hour.I no longer have to take the Sotolol, to pace my heart, nor coumadinto thin my blood |
 Only a person who suffers atrial fibrillation and/or atrial flutter can understand why I call it, "one of the loneliest diseases known to man." There is no way to describe, to another person, what it does to your mind and body, when an attack occurs.
It’s like trying to explain what a person with bi-polar disease feels when they have an anxiety or depression attack, or someone who experiences “panic attacks.” There are no words that can fully explain what a person with afib experiences, when they have an attack. The closest I have ever come to finding a meaningful explanation of it, is by saying that, "It is like what you would feel in your chest, for a few seconds, if you saw your child killed, by being run over by a car and having that feeling continue for 24 hours. You spend every waking minute of your life, scared to death that, the next heart beat is going to put you into afib, and when you are in it, you spend every minute, scared to death that it is going to kill you.” After a while the fear can actually control your life style. I became house bound, for fear of having an afib attack, while away from home. You can actually become phobic over it. Doctors consider atrial fibrillation, NOT to be a dangerous heart condition and say that it just makes you feel badly. I’m finally seeing that they must NOT be talking about my atrial fibrillation, or atrial flutter, when they say afib, “just makes you feel uncomfortable.” Atrial flutter, which I always had, makes you feel like you are going to die, it hurts, it exhausts you, and it is completely emotionally exhausting “Atrial flutter causes PTSD, which the medical profession construes as, “Post Traumatic Stress Disorder”, but with an atrial flutter victim, they have to live with: “PRE Traumatic Stress Disorder”, worrying about the next attack. “PRESENT Traumatic Stress Disorder”, while they are having the attack. “POST Traumatic Stress Disorder”, knowing that it is going to happen again and waiting for it to do so. Yes, there are three PTSD’s, but only one is recognized and treated, but an afib patient suffers from all three. And that can be devastating to their mind.” Nearly all medical professionals agree that, all heart attack patients and heart surgery patients, should be treated for PTSD, meaning “Post Traumatic Stress disorder“, but this isn’t happening as much as it should be. An afib patient lives with these three PTSD’s, which I call: |
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The impact of AF on my daily life: Why it makes you feel the way you do. A broad range of physical symptoms may be associated with AF. Some people have absolutely no awareness of being in atrial fibrillation, while others know precisely the moment when their heart rhythm destabilizes from normal sinus rhythm to AF. Many patients describe the irregular, often rapid pulsations of the heart in AF as an uncomfortable flopping sensation inside of the chest with a sudden and keen awareness of every heartbeat. This may be accompanied by shortness of breath, profuse sweating, chest pain, presyncope (dizziness), syncope (passing out), exercise intolerance and extreme fatigue. Others describe anxiety and a feeling of impending doom, especially when AF is first discovered. For some patients, the pattern of atrial fibrillation may progress from a paroxysmal and infrequent event to become a chronic condition. Often, there is a worsening or progression of the symptoms such that many patients feel incapable of carrying out normal daily activities. It is difficult for those who have not experienced AF to understand the impact that it can have on one's daily life. Battling the physical and emotional effects of AF is debilitating, yet no one knows that the battle exists because there are few outward physical symptoms. Employers, family members and yes, even treating physicians may be unaware of the decrease in functional capacity that AF causes. As a result, patients with AF often feel that others think that they are "exaggerating" their symptoms. Because AF is so unpredictable, patients are often reluctant to travel and may even avoid committing to social engagements. Frequent trips to the hospital for repeated episodes of atrial fibrillation can completely disrupt one's life, causing significant emotional and physical distress to victims and families alike. |
| My personal story of chronic atrial fibrillation had a happy ending. I was the 50th person in the world to have the "Wolf Mini Maze" surgical procedure performed on me, by Dr. Wolf personally. Dr. Wolf is the "inventor" of this innovative procedure for the cure of atrial fibrillation.
You can click here and see my actual MiniMaze procedure, as covered by the You may have to use your "Back button" to return to this page
On Memorial Day, aproximately 11 months after surgery, I was able to return to skydiving. Here is a photo of me on my first jump, in five years, after the Wolf MiniMaze cured me
If you would like to see the unedited video of my free fall, click here |
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The Center for Surgical Innovation ( 513) 584-3279 - email minimaze@uc.edu. (The 800 number is 1-86-MINI MAZE or 1-866-464-6293) |
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