My AVRT PSVT Story (pre-ablation & post-ablation)- Living with a deadly condition since birth

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Hello, everyone! This is my first time posting an SVT forum, and it's long overdue. The purpose of this thread is to share my rather unique experience with SVT. As you all may know, this condition is different for everyone. I hope by sharing my story, someone somewhere out there will be able to relate to what I've gone through.

I'll start with some basic facts about me and my health. I'm a very healthy 22 y/o female. 5'7" and 125lbs. I walk regularly and have no history of any other dangerous illnesses. My AVRT PSVT is abnormal, because it has been classified as "dangerous" and "non-benign". My heart rate during an attack regularly goes above 250, and in some rare cases has breached past 300 (the one monitor that caught my 300bpm, couldn't record past that amount so it may have been even higher). My attack frequency ranges anywhere from once a week to once every couple of months. The length can last a couple of seconds or a little more than an hour. I do not have WPW syndrome.

MY STORY:

My first memory of an SVT attack was when I was 6 (it was just recently confirmed during my EP study that my SVT has been around since birth). I didn't realize at that age that such a fast heart rate was abnormal. My SVT when I was kid always managed to resolve itself with some rest. Around the age of 12, my symptoms grew worse so I expressed discomfort to my parents. That began my journey trying to find a diagnosis. The first GP I saw was adamant that I was having panic attacks. I remember trying to tell him that I was calm during most of my episodes and that they occurred even when I was relaxing, watching TV. He didn't listen, and I continued to suffer with my condition while my parents blissfully believed this doctor. Fast forward to the age of 14. I started having more and more attacks to the point it was almost on a weekly basis. One of my school nurses took my pulse during an attack and told my parents that I should see a cardiologist. From ages 14-18, I was on/off event monitors, and somehow they never caught my attacks. Call it bad luck, but I always had an event monitor at the wrong time. I was growing both frustrated and hopeless as every cardiologist I saw told my I was okay. I learned to ignore my SVT and play it off as a small issue when it did occur. Then last year, at the age of 21, I had my first BIG attack. I can't describe the terror and fear I felt. The whole room felt like it was spinning, my chest was in agonizing pain, my heart was beating faster than I could've imagined, and to top it off it felt like I was going to puke my guts out. I had never called an ambulance for my SVT at that time, so I was hesitant. By the 15 minute mark, I was begging my friend to call 911 and she refused thinking I was just panicking and overreacting. The attack eventually subsided, but it took me several hours to fully recover from that godawful attack. My friend and boyfriend said I was extremely pale and that I felt clammy. That attack prompted me to return to my cardiologist and try a heart monitor again, this time for a full month. And somehow yet again, nothing was captured besides ONE PAC.

I finally got my first diagnosis this February (2017). I had another BIG attack. My usually trick of bearing down and laying down wasn't working and was actually making the rhythm and chest pain WORSE. The SVT subsided after 10 minutes and returned immediately prompting me to call 911. The adenosine they gave me worked at the highest dosage and I was sent home same day, with the urgent request to contact my cardiologist (it was at this point that I finally received my diagnosis of PSVT). When I met with my cardiologist several weeks later, I forgot to bring my ECG from the ambulance. The cardiologist prescribed me beta blockers and told me to try mediation saying that the stress was likely making the SVT worse. She told me not to worry and that SVT is a non-lifethreatening condition. She also requested that I fax her my ECG asap.

I faxed her my ECG when I got home and 10 minutes later received two phone calls directly from my cardiologist. When I picked up she told me that my condition is NOT benign and that I would NEED an ablation. I asked her if the procedure was optional, and she told me that it had to be done in my case because my condition was too dangerous. l reluctantly bit the bullet (it didn't seem I had a choice according to her), and set up an appointment with an EP.

[ablation story will posted below]

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    MY ABLATION STORY:

    I had my procedure two days ago on the 23rd of June (2017) and was awake for the entirety of it (3 hours). They gave me lots of sedatives but my body was very tolerant to it so it barely helped.

    They prepped me an hour before the procedure by shaving my groin and hooking me up to an IV. When they wheeled me into the cath lab, they did more preparation. Several cold shock pads were stuck on my chest and back. ECG pads were stuck all over me. They wrapped my arms very intricately in warm blankets and strapped my legs down so I couldn't move. They piled lots of warm blankets on me when they saw me shivering and gave me a tube that blew warm air under the blankets (Kaiser is fantastic with patient comfort). I was ready to go and feeling very comfortable at this point. Any anxiety I had was washed away by the team's amazing attitude and attentiveness.

    When the first EP came in (two were assigned to my room), that's when things started to go downhill. She numbed my right groin several times which was fine until the last needle. She had to wiggle it to properly inject the anesthesia and that hurt SO BAD. I have a decent pain tolerance, so I was surprised. The EP told me she was right next to a nerve which is why it was painful. Once that needle was out, she inserted the catheter sheath which felt fine. Then she inserted several catheters which felt very uncomfrotblae and borderline painful for me. It felt the worst once the entered my chest (it felt like I had a bad case of angina). As soon as they entered my heart, my SVT went crazy. And I mean CRAZY. It was jumping around -- 200 BPM, 180 BPM, 300 BPM (the monitor only measured up to 300), etc. It was terrible and made chest feel like it was going to burst. I didn't know what was going on and assumed the team was pacing me. I begged them to stop and told them I couldn't go on with the procedure. I found out later that that was all me and the occasional sharp thumps I felt in my heart was the team trying to pace me out of it. They finally succeeded and from then onwards, the procedure was much more tolerable. I still felt uncomfortable and sensitive to the pacing from the catheters but as they ablated more locations, it became less and less painful. By the end of the procedure I was excited to feel them pacing my heart fast then slow like clockwork. I could feel my heart beating normally for the first time in my life and it felt amazing. They did end up having to go through my left groin area as well as my extra circuit was located on the left side of my heart.

    It was nearly an hour before I was wheeled into recovery post ablation (they spent a long time preparing an anti-blood thinning medication and also applying pressure to my groin area).

    [Post-Ablation story below]

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  • Posted

    POST ABLATION:

    My recovery took 6 hours and I ended up staying overnight due to the time (11pm). I thought the worst part would be laying flat on my back or needing to pee (as that seemed to be most people's complaints), but for me it was having heavy sand bags on my groin for 6 hours. The first hour was fine, but by the second hour, I was hating every second of those sand bags being on me. I barely slept that night, mostly due to the IV needle in my hand (I'm skinny so those needles bug the heck out of me) and some sinus tachycardia.

    I am now two days post-op, and I feel alright except for the occasional tachycardia scare. My ablation was a success according to my EP, so I'm trying not to let the small scares get to me. Although, I seem to have developed sinus tachycardia (either from the procedure itself or from beta blocker withdrawals). To reduce stress on my healing heart I've resumed beta blockers and will be weaning myself off of them in a month. I will update you all on how that goes. I felt fine most of yesterday, but small movement and eating causes me to go into sinus tachycardia which in turn has made me dizzy, nasueous, and not a happy camper. I have to walk at a granny's pace to keep my heart from going too wild. Hopefully, my heart becomes less sensitive in the coming weeks or days.

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  • Posted

    FINAL WORD:

    My recovery seems like it will be a bumpy one, but it is worth it. And if I need another ablation someday down the road, I won't think twice. Even though I feel like my heart is beating too fast when I move or walk around, I have the comfort of knowing that my SVT is gone and isn't going to kill me. I think if my SVT weren't serious, I might be upset with the post-op side effects. But since the outcome of not having it done was worse, I'm fine with this and accept the discomfort.

    I cannot tell you how difficult it is to live with a deadly condition your whole life while constantly being told by doctors that I'm worrying for nothing. By the time I received my diagnosis a couple months ago, even I was in denial. I didn't want to believe that this thing I had my whole life could kill me. I lived so long acting like I was okay to cope with my condition. I don't have to that anymore. My SVT is gone and I can finally be myself.

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    • Posted

      Hello 2Bluuki, glad to hear your doing okay and I know what it feels like to have a life threatening arrhythmia. I also was born with wpw, but I didn't know about it until last year. My initial complaint was irregular heart beats. Gp hooked me up to and egg and found out I had wpw. I've never had an svt episode until I made the terrible mistake of smoking marijuana. I went to the hospital with 170bmp for about two hours. So Were I live there isn't any specialists in arrythmias so I had to drive two hours to see one. After I seen him he told me ablation was an option but that with wpw had a chance of cardiac arrest. I went ahead and made the appointment because I figured I still had the chance of cardiac arrest with or with out the ablation. It's been five months and I am arrythmia free thank God. My cardio told me my case was very unusual as my pathway was very large and there was times he couldn't keep it going during the ablation because it would stop suddenly on its own. He ablated it three times and the svt once. My procedure only lasted about 2 hours. I was awake the whole time and the anesthesia made my face itchy. I am also glad I did it and would do it again if I needed to. But he told me he believes I am done with arrythmias. I thank God because it could have been so much worse, the marijuana and beer I used to drink and not to mention all the dumb stuff I did as a teen could have triggered it and I wouldn't be here today.

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    • Posted

      What a story!  And, what an encoraging outcome!  Congratulations, thanks for sharing, and I hope you do better, and better and better, and....... 
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