Repost from the original site where we met. "Jen, my doctors want to do this for me too. Does insurance cover this? People dont feel their heartbeat? Do they think about every breath they take? I heard my doc did this for one other woman with fantastic results. I wonder if that was you? Was there any pain with recovery or down time?"
My repost back to her. "The woman had to have been me. I'm the only one they have done. People don't feel their heartbeats. People don't have to concentrate to try to force their dumb hearts to slow down. Other people don't have to consider every move they make because of their stupid heart.
I was on oxygen for months at home before they did this. I was in my bed unable to move. Walking 50 foot could get my heartrate to 160. It was nuts. None of the drugs worked. I was passing out. It sucked"
I knew having Inappropriate Sinus Tachycardia was extremely rare. Our severity level was also exceeding rare. If it's one place I don't want to be told I am unique it's in a top rated heart hospital. So we had each other. No one else in the world like us and we actually met. It was amazing. Made things much less scary (for me anyway.) So we made the journey together and answered questions the docs asked together. (In the same room at the same time.) They said each of our hearts are a one in a million. So the odds of us being in the same room was mind boggling to them. Plus, we found each other without them putting us together. Because my mother did not tell me not to meet people from the internet! Some things are just meant to be. We decided to work together to help the doctors learn from us FASTER. Because time was of the essence. Before we went into heart failure. We've been through experimental surgeries, open heart, and getting pacemakers installed together all in one year. Hard to complain when you have someone else who knows EXACTLY how you feel staring at you. She yelled at me to stop Hip Hop dancing in the cardiac unit and I yelled at her to come walk with me after her surgery when it hurts like hell to take a breath.
I didn't have any other options at the time so when the docs came to me with their new fangled plan I told them to book the surgery. They said they hadn't tried this surgery on ANYONE. I'd be the first heart patient to get it for tachycardia. They brought me a journal article about the surgery on a guy FOR ANOTHER ISSUE and that dude died. But Jeremy (my husband) and I decided we had no other choice. Sometimes you don't have journal articles to study or patient outcomes to read. Sometimes you have to go with your gut feeling. I trusted this doctor and knew he wouldn't let me die. Not because I had proof. Because I had FAITH.
So I took a leap and offered myself up in the name of science. We went into the OR and they put me to sleep and put my head on a block. While asleep they injected pain killers and steroids into my spine into a bundle of nerves called the stellate ganglion. This is an extremely small target to hit. They used an ultrasound to identify the tiny area while using a huge needle in my spine. One miscalculation and I'd have a heart attack or stroke. They injected one side then woke me up. I talked immediately to make sure I didn't have a stroke. But then 3 days later they injected the other side. Like magic they "reset" my sympathedic nervous system. We knew it worked because my hand on the side they injected got to 110 degrees. 13 degrees hotter than the other side. That part was temporary. But meant we hit our target. Nurses and doctors kept coming by for 3 hours to hold my hand and feel the effects of the surgery. It was a miracle in the making.
The "reset" of my heart had been achieved so I had to retrain my heart. In the gym. 2 hours a day. Being careful to not overdo moving quickly or my heart would speed up again. I got on a elliptical and cried. I took a picture of my heart rate and sent it to my parents. Because we achieved something I didn't think was possible. I moved and didn't pass out.
April has been right by my side the entire year. For every surgery, every problem, every complication. She's pulled me up while I was screaming with a chest tube in my lung in the ICU. She's laughed as I brushed my teeth five thousand times. (I have a problem ya'll. I like clean teeth. Don't judge me.) I didn't realize how many times I brushed my teeth until I brushed April's teeth in the ICU when she had surgery. Because good friends do that for each other. Good friends support each other in crisis. It doesn't mean anything if you are only there for the fun times. It matters when you sit through the bad ones too. So many family and friends have stepped up to help me. I'll write more about them later! The support I've been lucky to have received is humbling. I have a heart twin. Her name is April.
Jenny
As said heart twin, I have to say I couldn't have gotten through any of this if I hadnt met Jenny. I would not have known that our miracle Surgeon even existed. Jenny gave me his name after my Baylor doctor cancelled on me for the second time. All that we have been through this year has formed a bond that will last a lifetime. We will have many more surgeries together to change out our pacemakers and eventually our leads but we wont be alone and someone else will know what each of us is going through. When our families tell us we should just give it time and be positive there will always be someone else who understands that if we say something is wrong.. that we know what we are talking about. Thank you Jenny for getting me through this. We were both at the ends of our rope and now we both have a chance to be close to normal.
ReplyDeleteApril- AKA Heart Twin