Hello All and Everybody,
My name is Danielle, some folks call me Daniyelli and other folks call me Dan-Dan. I am 32 years old. I am a mama to a beautiful little girl named Lilliana. We live in Upper Michigan and I make a living as a polymer artist.
I wanted to make a post and also talk about my experience having a heart ablation for Ventricular Tachycardia and more often known as SVT (SupraVentricular Tachycardia). You can read my blog here and/or also watch my youtube vlog which basically talks about the same exact thing I'm writing about here. If you prefer to watch the video over reading, visit my youtube channel "Danielle and Tigerlilly".
If you have been diagnosed with SVT, VT, Atrial Fib or any type of arrhythmia then you have probably already googled and researched everything about it. I was 29 years old when I found out I had SVT. I spent my entire life up to this day never knowing or even suspecting I had an arrhythmia. I never had any issues with my heart, I had a high exercise tolerance and lived a very normal healthy life for the most part aside from migraines and anxiety issues.
I was seven months pregnant with my first daughter and had recently relocated back to Upper Michigan from Asheville, North Carolina. By the end of 9 months, my obgyn doctor had decided that because of my high anxiety giving birth that it would be best if I had a C-section to deliver Lillliana. I agreed and signed all the papers. On October 29th of 2014 I arrived at the hospital and in a few short hours I would meet my little girl. There was a great team of doctors in the room, many nurses and my obgyn herself performed the C-section. Lilliana's father resides in Mexico and was not present for her birth. The doctors gave me wonderful support. I was hooked up to a monitor to keep an eye on my vitals. The only complication was that I had lost a lot of blood but my vitals according to the monitor were stable and I made it through the surgery with flying colors. They wheeled me to the recovery station where I was again hooked up to a monitor to keep an eye on my vitals, this is normal for any surgery patient. About twenty minutes into my recovery, the machine began throwing off pvc's. The nurse was concerned and consulted with the other doctors, the assistant surgeon that was in the room came in and mentioned that I was not having pvc's during the operation. They kept an eye on me and waited for them to pass. They eventually did stop and I was then wheeled back to my hospital room to complete my recovery where I also got to hold my daughter and bond with her. My family came in and met her and I spent most of the day recovering normally like any other C-section patient. Later that evening, the machine began throwing off pvc's again. The nurse had come in and checked my vitals and seemed highly concerned. The hospital I was at did not have a cardiology department so the nurse taking care of me and the other nurses on duty really had no clue as to what was happening. It was clear that something was wrong with my heart. They were ready to transport me to the bigger hospital that was 30 minutes away because they had a cardiology department. There were a dozen different doctors that came in and out asking me questions as though I was on trial. They had assumed that I knew things about my heart that I did not. They were in total shock that I couldn't feel these pvc's and that whatever was happening, I couldn't feel. I repeated myself over and over to every doctor I met. I had no idea what was going on and whatever was happening, I couldn't feel. I felt totally fine, my heart felt fine, I just wanted to bond with my baby and go on with my life. The monitor and vital machines were telling them differently.
The hospital started performing ekgs, an mri and scans of the heart, blood tests, every test known to man. I spent several days in the hospital. I was suppose to be up and walking around after the C-section, they didn't have me sit up from the bed for three days. I couldn't shower and I was still hooked up to the same cath they did before the surgery . I was so lucky to have my sister and her husband there to help me with the baby. After all the tests and discussion, they had talked to a few heart doctors and it was assumed that there was some type of heartbeat irregularity going on or some type of arrhythmia. They told me that this was probably something I had my entire life and had no idea that I had it. A cardiology specialist had confirmed that there was indeed an arrhythmia happening and he instructed to send me home with a 48 hour monitor and a beta blocker. So finally I get to go home with my baby, still haven't showered and now I have to wear this 48 hour monitor with all these wires attached to my chest and stomach to which I also cannot shower with. It was a very interesting experience but I was just happy to be with my little girl and bring her home.
While wearing this monitor they told me to write down any type of feelings I had such as flutters or skipped beats, things like that. After 48 hours I handed in my holter monitor with a completely blank activity sheet because once again I couldn't feel these so called pvc's or flutters. Infact I had no idea what they were, never heard of them in my life. I thought this holter monitor was so silly, I thought all these doctors were crazy and they were just trying to make money off me by making up medical conditions. I began getting horrible migraines from the beta blocker and stopped taking it. My cardiologist scheduled a follow up appointment where I would get to sit down with him and discuss the results of the 48 hour holter monitor.
At the appointment, the cardiologist was very kind and patient with me. He explained everything very thoroughly and confirmed that I did indeed have SVT. He explained my many ekg's and what exactly was happening to my heart. I was having a ridiculous amount of pvc's and my heart skipped every third beat. I asked questions like was I going to be okay and can people die from this. He said sometimes people can die from this, sometimes they go into cardiac arrest and sometimes they die in there sleep. He explained to me different options like going on medication or having an ablation. At the time I was so clueless and careless about it because I couldn't feel it and we both agreed that it was okay for me to just go on with my life. We would continue to keep an eye on it and if anything should change down the road, I would let them know.
I went on with my life for nearly two years. I had my daughter October 29th of 2014 and it was the morning of March 27th, 2016 that I had my very first palpitation. It scared me very much. I was sitting on the couch watching tv and suddenly my entire face became flushed, the heat wave started in my chest and went up through my head. I froze and could feel my heart beat increasing. I was shaking really bad. I looked down at my chest and could see my heart literally pounding out of my chest. My heart never beated so fast. I was home alone with my daughter and I thought I was having a heart attack. I called 911. The EMT's arrived shortly and hooked up a monitor right away. I mentioned the arrhythmia but by this time I had forgot what kind. They mumbled something about a tear on the scan and jumped up and said they are bringing me in. I thought I had a stroke or a heart attack. It was a terrifying experience. My sister had rushed over to watch my daughter when they arrived. I was very scared and didn't know if I was going to live or die.
I arrived at the hospital, this hospital had a cardiology department so I was put into a cardiac ER room I guess you would call it. They hooked me up to a bigger machine and of course it started throwing off those pvcs. Once again, I went through the same process, ekg's, mri, xray of the heart, a hundred different tests and a dozen different doctors. They had finally got ahold of my cardiologist and he came to the hospital later that night and we both agreed that it was time to do the ablation. He did say that I could try medications and that they have a 40% success rate in controlling an arrhythmia but that sometimes people can die from them. I was a single mom and that wasn't an option to me. They kept me on a monitor overnight and I got to go home the next day.
The ablation procedure was scheduled a bit out. They put me on a beta blocker to help calm the heart a bit and get me through til the surgery day. The entire time in the hospital I did not have any more palpitations. I was on the beta blocker for a month and still had no palpitations the entire time I was on it. My surgery was scheduled for July 20th 2016. It was the beginning of May that I started to have the palpitations again. They were nothing like the first palpitation I had. I had these episodes several times a day, my chest and face became flushed with fire, my heart would flutter and race, my breathing felt restricted. They would last about 3-5 minutes. The only thing that helped was sitting in front of a fan and drinking a cold glass of water. Each episode was so terrifying and each episode I felt like it was going to be my last moment alive. Although it is unlikely to die from an SVT attack, you always think that you will be the exception. I couldn't wait for the surgery, I just wanted to get it done and over with and to get rid of these palpitations. I hated them and my quality of life was so questionable. I couldn't go for walks on the nature trail with my daughter anymore because I was afraid I would have an episode and pass out on the trail. Everyday was a question mark. I just wanted the surgery date to get here.
The cardiologist sent me forms in the mail to prep for the surgery. I was not to eat or drink after midnight the night before my procedure and I was to stop taking the beta blocker, aspirin and any other medication a week before the procedure. I arrived for my appointment at 8 AM. They brought me into a room and prepped me, they shaved my groin area and asked a few questions like when was the last time I ate and took any medications, medical history and such. I sat in the room waiting for sometime before they wheeled me down to the OR Prep Room. They started an IV and again asked me medical questions. The anesthesiologist came in and explained what was going to happen and that he would inject me with a little bit of anesthesia but not enough to knock me out, just enough to keep me comfortable. Eventually the cardiologist came in to talk to me before the procedure and explained what was going to happen and that I would hear him say certain terms and he explained what they meant. He said that he wanted me awake during the procedure because it would help induce the arrhythmia where as if I was completely knocked out, it could lower the chances of having a successful ablation. He said he would also inject me with something that would induce the arrhythmia so he can see exactly where the problem areas are. It was about two hours til I ultimately made it to the actual operation room. It was a huge dark room, there was a giant monitor on the wall and lots of other operation room staff. My cardiologist was there, the anesthesiologist, a person or two reading the heart map. nurses and assistants. They placed this thing on my back that helps to get the heart going again incase there were any problems. I had to lay flat and not move. The cardiologist inserted a needle through the groin up to the heart. I felt a small pinch and some pulling but it was not uncomfortable or painful by any means. For most the procedure I felt nothing. I was fully awake, didn't move, I heard a lot of terms that the cardiologist had mentioned he would say. During the end of the procedure they had encountered a secret area that they did not know was causing issues, it was in the center of my heart and I had a really hard time with that area, I felt a bit uncomfortable and I remember asking what was happening and the cardiologist had said that he has to get it, it's there and we have to get it. So I just tried to stay strong and get through it. It was soon over and the ablation was complete. I was happy it was over but it was not nearly as bad as I made it out to be in my head. I don't know why I was so scared to have the procedure. They wheeled me back to my room where I was to finish my recovery. I had to lay flat for several hours. I would say the worst thing about the entire procedure was the back pain from having to lay flat for so long. The cardiologist came in to talk with me and said the procedure was 100% success, he got all of them and that I was in perfect sinus rhythm. This was a such a relief to hear. He told me to get some rest and I literally laid there so happy that I would possibly never have to deal with those awful palpitations again.
Later in the evening I had told the nurse that I had a migraine from not having any coffee or anything to eat all day. I literally went from midnight the night before to 9 o clock at night the next day with nothing to eat or drink. She brought me a little bit of coffee, some mini cookies and some pain meds to relieve the migraine. I ended up throwing up the cookies. I think it was just my body's way of telling me that was epic. I was fine after that and I was released from the hospital that same night. Very rarely do you have to stay overnight after an ablation. The cardiologist said that the procedure took 4 hours total but it felt more like 6 to me. They would know better than I would obviously. My sister and her husband drove me home to get some rest. They watched my daughter overnight because I was still recovering and unable to lift my daughter. I made it through the night with flying colors. I did have a limp walk because my groin was sore but I felt perfectly normal otherwise. They say the recovery time is two days but I would say it took me about a week to walk normal again without the limp. I did have a heart pounding palpitation the morning after the procedure but that was the only one I had for a good month and half after the procedure.
I felt really good for about six weeks after the ablation. I felt like I was getting on with my normal life and back to the old me. Unfortunately I began having these waves of dizziness that would come and go about two or three times throughout the day. I would just be sitting on the couch and felt like passing out. I also started having some other strange bizzare symptoms such as muscle twitching, chest pains, blood pooling in the upper legs, migraines, my stomach was bloated after eating and I ultimately couldn't eat very much, I was constipated. My heart felt fine, it would occasionally race a little bit but at the time it seemed like the least of my problems. Eventually the dizziness and the other symptoms got worse and worse. The correct medical term is presyncope, I felt like passing out but never passed out. Everytime I stood up, the dizziness got worse and my heart rate would increase. My body kept telling me to go lay down, once I was completely laying flat, all my symptoms would subside. I ended up laying in bed for most of the day for a good two months. I was in and out of the ER a few more times and I made an appointment with my family doctor. The ER would always hook me up to the heart monitor and do chest xrays and ekgs but everything always came back good, I was still in perfect sinus rhythm. I not only did another 48 hour monitor but I also did a 30 Day Event Monitor. They said I was a bit orthostatic and that my heart rate was a bit higher but that my heart was fine. I think we were all leaning towards my heart because that was the last issue I had. I called the cardiologist and they did set up a follow up appointment but they couldn't get me in with my cardiologist until another 2 months. My cardiologist was very adamant on seeing me at the three month mark. As anyone knows who is having an ablation, three months is the complete healing time frame after having an ablation. They could only get me in with the nurse. In the meantime I started googling and I entered my symptoms and came across this thing called "POTS Syndrome". POTS stands for Postural Orthostatic Tachycardia Syndrome. The more I read about this syndrome, I began to truly believe that this was exactly what I was experiencing. I dug into the research a little more and came across this article that talked about a study done on several patients who had an ablation and ended up with onset POTS. There are a million reasons why someone would have POTS, sometimes it's even genetic but this ablation could also be a reason. Unfortunately POTS is considered rare and there are no POTS specialist in my area. I brought it up to my doctors and one of them actually agreed that this could be what I was dealing with but they wanted me to follow up with cardiology first. Again I could only see the nurse at the cardiologist office so I was still waiting to get in with my cardiologist. Ultimately I went to my appointment with the nurse and the nurse disagreed and said that she didn't think I was orthostatic but that she said I had something called Vasovagal Syncope. I went home and googled this and it was similar to what I was experiencing but I was still convinced that this was POTS Syndrome or some sort of nervous system disorder. They ordered a stress test and another echo of the heart which came back fine. I was a complete medical mystery and most doctors just thought I was crazy or my anxiety was way out of whack since all the blood tests and monitors showed nothing. I knew that whatever I was dealing with was completely invisible and the only thing I could prove was the blood pooling in my upper legs. Even then they weren't concerned and obviously didn't think I was dying so I was left to fight this fight on my own. It was agreed between all of us that I should go on an SSRI or Anti-depressant. The nurse said that an SSRI often helps people with Vasovagal Syncope, POTS and of course Anxiety so I agreed to go back on my Celexa that I was on a few years ago. They also put me on salt tabs which help increase your blood volume. The first week I took the Celexa, I felt very weird but my presycope episodes dissapppeard immediately. I felt kind of high and lost the first week while waiting for my body to adjust. I wanted to stop taking it because I didn't like the way it made me feel but I loved the fact that I could sit up finally and not spend all day in bed. The dizziness was gone and that was good feeling but the zombie effect was killing me. After about a week, I started to feel so much better. The zombie feeling went away, the presyncope was gone and I was simply left to deal with these other weird symptoms like the migraines, the stomach issues and blood pooling in the legs. There is a whole list of symptoms, not just the ones I keep referring to. I would have these crazy outburst of sweat and then suddenly I'd be freezing. My heart rate would be normal and then the next it would fire up to 150. I had painful electric type bolts of pain shoot up my neck occasionally and severe ear tinnitus.
It had officially been three months since my ablation and finally the cardiologist was ready to see me and go over my craziness and all my monitors and dozen trips to the ER. He said that as far as the ablation goes, I am doing wonderful. The ablation for my SVT was a success. I no longer have SVT or any type of arrhythmia. According to my monitors from my very first original 48 hour monitor to the one I most recently did, I went from having 100,000 PVC's to just 300. We were both very impressed with that. We talked about the presycope and I told him that the Celexa was helping a lot with that and we agreed that I should continue to take that. He said my occasional heart rate increase was nothing to worry about. According to the monitor, the highest it reached was 169 and that's not of concern to him. He said he could give me a beta blocker to help slow down the heart rate or I could just get use to my new heart rate. He mentioned that sometimes the beta blocker can make symptoms much worse so I chose to not go on a beta blocker and just try to adjust to my fast heart rate. He did not confirm if this was POTS or Vasovagal Syncope. I was left to conclude that they had no expertise in this matter and deal strictly with heart conditions. Though POTS is mostly dealt with by cardiologists and is considered a heart condition, it is very rare that doctors know anything about it. I would have to see a specialist downstate or travel elsewhere to get an opinion on that.
It has been 8 months since my ablation. I am doing wonderful. My POTS and or VASOVAGAL SYNCOPE is being well managed and under control with the Celexa. I still have a fast heart rate but I have adjusted very well to it and it hardly bothers me at all. I have not had a palpitation or SVT episode since the day after the procedure. I am taking PEPCID to help control my stomach pains and that has helped me tremendously. I am living a fully functional life again with the exception that I do have a very low exercise tolerance. I am trying hard to retrain my heart but it is very difficult to do any kind of heavy activity. This is possibly mostly because of the POTS but the most I can do is a 15 minute brisk walk before my body tells me to sit down. I do get dizzy still from time to time and my family doctor and cardiologist have agreed to increase my Celexa to see if that helps. Otherwise I do still plan to see a specialist but right now it is not an emergency because it is well controlled but ultimately I will go to Vanderbilt in Tennessee to see a POTS specialist. As far as the SVT goes, the heart ablation was a success and I would recommend it to anybody who has SVT, VT, WPW, or AFIB. I am told that you can have palpitations for several months after the procedure, this does not mean that the ablation didn't work. You have to give your heart time to heal. It took me 8 months to get back to my old life. And also note that just because I have POTS does not mean that you will get POTS. It's just something that happened to me and few people in between. It's very rare and unlikely that it will happen to you to. Some people have up to four ablations before they have success in getting rid of their SVT. Most people have success with the first try.
I had one of the best cardiologist in the area perform my ablation. His name was Dr. Evonich of Upper Michigan Cardiovascular Associates in Marquette, MI. He is a great doctor and really knows his stuff, he is very informative and confident in his ability to make you better. I would recommend him to anybody that is willing to travel this far to have a good cardiologist perform your ablation.
That's my SVT Ablation story! If you have any questions or comments about anything, please ask away or comment away.