So I have been told over and over in the medical community how special I'am, how rare my condition is, and how I don't fall into a regular category. My case is unique they say. Unlike any other they say. Isn't that true of us all though. I mean We all are special because we were created in God's image. Each one of us a true miracle. Our lives have purpose because of our Maker. We were born with a purpose. Because of the Lord's hand and new advances in medical technology I have gotten to be a wife, a mom, a friend, and share Jesus with so many.
Twenty years ago my heart journey started. I started passing out. I had several fainting episodes. Thanks to great insurance I was able to have a myriad of tests in a total of two weeks ultimately leading them to discover that I had complete heart block. The only way to keep me alive was to put in a pacemaker. So crazy to look back at all of that and see God's faithfulness over the years. How he has sustained me. They put my first one in at the ripe age of 19. I would go on to have two lead failures which led to emergency surgeries with new leads placed in my heart and new pacemakers. Making this a total of three. Because I'm fully paced 100 % of the time my battery is only good for 6-7 years. I had my fourth pacemaker surgery 2 1/2 years ago. Hope your all keeping up😏 it's a lot.
This last year I have had a ton of pre Ventricular beats and small Ventricular Tachycardia beats. That small pacemaker in my body records all heart activity. It's unbelievable technology. It amazes me. They have adjusted my pacer with no luck of stopping the episodes. After my 20 min short g- tube surgery my heart was in distress causing my cardiac enzymes to be elevated. They are still not clear why. Like I said I was only under for 20 minutes. Two weeks later I had a Ventricular Tachycardia episode that caused me to black out for a few seconds. At my Cardiologist appointment they picked up from my pacemaker recording that the V-tach episode lasted for 11 seconds at over 200 beats. Super Scary!! How you all doing? Still with me? You all are going to be heart pros after this. The doctor grew concerned at this point and had to take everything into account. My muscular dystrophy, me being completely dependent on my pacemaker etc. After discussing my case with several doctors familiar with my history they landed on the safe approach to put in a subcutaneous Defibrillator. They did not want to take any chances of a longer more dangerous Tachycardia episode occurring.
Well that surgery took place last week and did not go well. I left the hospital with the battle wounds and no defibrillator 😞After they put in a defibrillator they have to test it to see if it will work. They put your heart into V-Tach and the defibrillator should shock the heart. It sadly did not so they had to use the paddles. You know those crazy things you see on TV when they are trying to save a persons life.😳 Yep they used those! They did this a total of four times and the defibrillator never kicked in. It was mis reading my pacemaker. So at this point They made the decision not to keep me under any longer. They had to sew me back up with no defibrillator. The surgery that was suppose to take 2 hours took four and instead of a defibrillator sewn into my body I got fitted with an outside "Life Vest". Think uni bomber. It's a uncomfortable tight vest that is a external defibrillator. It's there to protect me should an episode occur. You could say My best friend for the moment. To say I was disappointed about the surgery was an understatement. I was tired, sad, and did not want to hear that more surgery was in my future. At the same time I was alive, my brain was working, there were no other complications, and I could still cry out to the Lord. All things I will never take for granted.
Yesterday we met with my amazing Doctor who has basically lost many hours of sleep studying my case and talking to all the top doctors in this field. I'm so grateful for this man. He discussed two options with us. One option was to remove all of my leads and start new on the left side with a pacer/defibrillator combo. Super high risk for lots of complicated reasons with many doctors who are very uncomfortable with this option. It may be needed in the future but they all agree to put it off for as long as we can. Option B was to leave my pacer and the leads that are on the right alone and to just put an additional Pacer/defibrillator combo on the left running another lead to the heart. This is the plan we are going with. So I will now have two pacers. The kids think this is funny and cool all at the same time.They are calling their mom a Cyborg. The TSA's are going to have a field day with this I'm sure. The reward will be that if the pacer on the right should go out or a problem with a lead occur we will have a back up. We will also have a much needed defibrillator keeping my heart from going into potentially deadly v-tach episodes. All very good things.
There are risks with this surgery but they far out weigh the other option. We feel good. We feel relief. We feel thankful for life saving medical equipment. We feel ready to get it all behind us. It's been a hard last few months. Like always we see God's beautiful hand in it all, he's allowed us to minister to people through it, he's worked through his people beautifully as they have ministered over and over again to us. It's because of this that we stay strong, it's because of this that are kids are doing amazing through it. Keep praying and keep trusting. These 20 years are proof that God is so mighty and sovereign and works beautifully in all things.