Ashley's Posts

Hi everyone - Hope all is well. I just wanted to provide a quick update on me... I realize I haven't had open heart surgery yet, and an ablation does not even come close to comparing. However, I also know that many people who have open heart surgery end up needing an ablation later on. I hope this post provides encouragement. So here's my ablation story: After finding out from the Cleveland Clinic that it wasn't time for valve surgery yet (and hopefully it'll still be a few years), I met with an EP in Atlanta. I sat in the room with cautious optimism. I was thrown off when he walked in and said he wanted me to have valve surgery before he worked on me, but I told him what I heard back from Cleveland Clinic. After that he agreed to continue treating the heart rhythm issues I've been having. After studying the EKG, he could tell that my PVCs were coming from my right ventricle near the outflow tract. They weren't originating near the aortic or mitral valve or from my severely enlarged left ventricle. So he decided that I have a completely separate issue outside of my two faulty valves. He gave me an 70% rate of success and said if he can fix it, he expects my ejection fraction and heart size to improve. If that happens, there is also the possibility that my mitral valve won't leak as much (presumably my heart is stretched so much that it stretched the valve causing the leakage). He reassured me that he wouldn't be aggressive with his treatment and that he would be very "gentle." He explained that wanted to do two things during the ablation: 1) Do an EP study to see if he could induce cardiac arrest (ventricular fibrillation or ventricular tachycardia). He thought since my heart was so enlarged that he would be able to. If he was, I would get an Implantable Cardioverter Defibrillator (ICD). This freaked me out... 2) Figure out exactly where the PVCs are coming from and ablate them. I'm so happy to report that the ablation was a success. He was able to rid me of my PVCs (at least for now) and he was not able to induce a dangerous rhythm. In other words, it went as good as it could possibly go. I feel like a new person. Before I had that vibration in my chest 24/7 (similar to what you'd feel at a loud concert). Today it is gone. It's weird to not feel my heart beat at all. I'm hopeful that this will further delay any valve surgery by reducing my heart size, mitral regurgitation and improving my EF (currently 41%). For those of you that are having an ablation...it was so much easier than I imagined. Here's the play-by-play (feel free to skip over this part): I was back in a holding room for 2 hours watching "drunk" patients roam the area (people that had just had surgery). My husband was able to join me for the last 30 minutes before "go" time. I met with the doctor right before I went back. He reminded me that he was going to be very conservative and gentle as I listened with tears in my eyes. I said my goodbyes and was wheeled down the hall by two very sweet nurse anesthetists. I was able to get onto the table myself. I sat on the table while they applied cold patches all over me. They shot something in my IV and the last thing I remember saying was "talk to y'all later" (that was a little premature and I'll explain why further down). I woke up to my husband and my mom in the recovery room. The first thing I did was look at the monitor to find a beautiful and normal sinus rhythm. They told me it was the surgery was a success and I cried tears of joy. Well it turns out that they give you something to prevent you from creating new memories so this cycle went on about 10 times (look at the monitor, ask how it went and cry). Ha! My shoulder hurt pretty bad (felt like heartburn), which is from referred pain from the heart. My chest was also sore. It felt cold when I took a deep breath and tight. This subsided within a couple days. The doctor came in and told me I talked the whole time (although I don't remember it). I'm positive I annoyed him because he said he felt like it was a medical interrogation, but said he was impressed with my knowledge of the heart! I remember him telling the anesthetist to quit talking to me. Anyway, I was very excited to learn that it had worked. I hope this provides encouragement to anyone about to have this procedure. I'll probably take a step back from posting for now since valve surgery is on hold, but I will continue to post periodic updates. This bicuspid aortic valve of mine is doing ok for now so I'm happy to sit back and hang out in the waiting room. In the meantime, I'll continue to check in and pray for all of you who are recovering or going through surgery. God Bless!

Firstly, I want to say that I'm sending all of my prayers to all of those that are having surgery this week. The long awaited phone call from Cleveland Clinic finally came. The sweet nurse on the other end of the line explained that Dr. Gillinov and his team did not think it was time for surgery yet, but that it's definitely in my future. When it's time for surgery, he will be the first person I call. I have so much respect for someone that says it's not time. The surgeon I met with in Atlanta, was ready to do cut me open that day. Turns out echocardiograms aren't always what they seem. This came as no surprise to me; however, I was surprised by how poor it was. Dr. Gillinov suggested that I travel to Cleveland to have a repeat echo there, but I turned down the offer since his opinion matched up with that of my Cardiologist here. The echocardiogram isn't all that it's cracked up to be and beyond diagnosing my cardiomyopathy and bicuspid aortic valve, it hasn't been helpful. Dr. Gillinov thought that my aortic valve only has mild stenosis. Cue the MRI. Meanwhile, I get my report back from my cardiac MRI and it corroborates everything Dr. Gillinov and my cardiologist said. The MRI showed measurements that were far different from the most recent echo. The good news was that my bicuspid valve is only mildly stenotic. The bad news is that my heart is still severely, severely, severely enlarged. So where do we go from here? Well to an EP of course who is suggested that I have PVC induced cardiomyopathy. It's a rare form of cardiomyopathy that can happen when a person's PVC burden is greater than 24% of total heartbeats a day. In my case, PVCs make up around 30% of my total heart beats; thus, the cardiomyopathy may be PVC-induced. That is the best case scenario because it means that diminishing the PVCs may allow my heart to heal and the mitral valve leakage to improve. The worst case scenario is that I have something called arrhythmogenic right ventricular dysplasia, which is a progressive disease where fatty cells invade a person's healthy heart cells, which causes arrhythmia and heart failure. The progression of the disease is unpredictable and it's also hard to diagnose. So I now realize why my heart is so unique. I have two separate, unrelated issues in the bicuspid valve and the arrhythmic issues on the right side of my heart. Got the short end of the genetic stick it seems. I met with the EP yesterday and he confirmed the PVCs are originating on the right side of my heart. They aren't in the common location of origin, and he won't be able to pinpoint exactly where they are coming from until he looks around. He gave me a 70-80% rate of success for eliminating or greatly reducing their number. He said an ablation is absolutely necessary and waiting is out of the question. So on August 2, I'll be having an EP study and an ablation. In a way, I'm excited and I'm hopeful, but I am also trying to not get my hopes up. Seems like good news is hard for me to come by these days. He's going to do 2 things... (1) an EP study to try to induce ventricular tachycardia and fibrillation and if he can induce I'll be fitted with a shiny new defibrillator and (2) ablate the PVCs but if they are in a risky location, he won't be able to. I pray he won't be able to induce a dangerous rhythm and that he's able to successfully eliminate the PVCs. The ablation freaks me out a bit. Would love to hear from anyone that's been through one about what I can expect. Also, appreciate any prayers and good thoughts for the procedure on August 2. Thank you to everyone for all of your support!