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My AVNRT Story

Oct 16, 2011 - 12 comments

To begin at the beginning I have had issues with tachycardia my whole life.  I remember as a kid feeling this weird racing type feeling in my chest but thinking it was normal and everyone did it.  It only happened once in a blue moon so I really didn’t give it much thought.  I grew into a young adult and adopted a smoking habit.  The racing heart wasn’t something that was prevalent in my life at the time still only occurring once in a blue moon.  Then sometime in my thirties I started to notice all these weird trouble breathing type episodes start to happen quite a bit.  I can’t say for certain that this was the main trigger but in January 2001 I needed surgery for a second fibroid tumor and after it was done while in recovery my doc mentioned that at one point my vitals went a bit erratic but they were able to stabilize me and all was good.  I thought it kind of odd but was grateful they kept me alive.  Not thinking much about the fact that I really had the episodes all my life I rationalized that I was possibly hyperventilating from the effects of smoking.   In hindsight I should have pressed the doctor and frankly she should have followed up with me on the issue but at the time I did not pursue whatever it was since I really blamed it on my smoking and didn’t think there was much I could do about it.  Also in hind sight I had a really rough time physically recovering from the surgery more so than the first fibroid surgery, yes, I have had 2, the other in my early 20s and another whole long story.  In any event, this second surgery really seemed to take a lot out of me physically.  I thought to myself I don’t know if my body can handle another surgery, I might physically die from it, but I realize now that it was having the episode that took so much out of me physically and not necessarily the surgery.  Likely the combination of surgery trauma and a fast heart beat was a lot for my heart to deal with at one time.  In any event the episodes in the early days were difficult to say the least causing me to become quite light headed and feeling as though I would pass out because frankly I did not know what I was dealing with and did not know how to better manage the episodes so when they did happen they stopped me in my tracks.   But again, thinking it was smoking related I realized it would be a good idea to quit.  

That didn’t happen right away because frankly quitting smoking is hard but because I did nothing to deal with the episodes they got progressively worse.  Finally as I neared 40 I decided I had to quit, because it was really coming down to me or the cigarettes.  Luckily I was able to give up the habit with the help of chantrix.  I wish I could have quit on my own but I am grateful there was an aid available that worked for me.  After I quit I thought to myself that I would be able to now get rid of the episodes or in the minimum get them back to a state of once in a blue moon.   I figured I would take some time to get healthy and then go see a doctor if the episodes didn’t stop.  6 months later I get an episode so bad it literally knocks me out.  It lasted 8 hours and all I could do was lay on the couch for fear of passing out.  Once the episode passed I felt so tired I can’t even explain it.  I have never felt so unable to even move that I realized I should probably research and see what I am dealing with.  When I looked on line I was quite surprised that I wasn’t actually hyperventilating at all.  I was actually going into tachycardia.  I decided it was time to go straight away to see a doctor.  Initially they did the routine tests, blood work, a stress echo and then a holter monitor.  Problem was I had an episode the day before I got the monitor not the day I was wearing it so no valuable information was recorded.  The doctor basically gave me a diagnosis of good health.  I knew this wasn’t the case but decided I wouldn’t  pursue it further at the moment.  I had it in my head that maybe I could fix it myself by getting myself into good physical shape.   I got myself into a daily exercise routine and slowly but surely changed my diet around for the better.  To some degree it did help.  The episodes didn’t go away but they weren’t as intense and I seemed to be able to tolerate them to the point of almost being able to function.  That was until about 2 years later I had an episode that lasted 12 hours.  I never actually went to the emergency room for any of my episodes because I always figured they would just stop.  They always did.  But I did go back to the doctor.   Well a different one.  This doctor saw it fit to send me to a cardiologist.  The cardiologist gave me an event monitor to wear for a month.  A much better idea since the episodes didn’t happen every day.  They did seem to be happening every week though.  Mostly very short episodes but they did seem to be coming more frequently.  I also learned from the doctor that the condition will not revert itself.   The condition they suspected I had was called avnrt.  A person with the condition is born with extra fibers in their heart that act as an accessory pathway for a secondary signal to reach the AVnode and get stuck in a loop causing the heart to beat upwards of over 200bpm.  My average rate was around 230.  It is a condition that is not well controlled by medicine and one that will continue to get worse over time.  They suggested that I have an ablation that would correct the abnormality once and for all but it was my choice whether to proceed with it or not.  I decided weekly episodes for the rest of my life weren’t something I wanted so I agreed to the ablation.

The day of the surgery I reported to the hospital same day surgery area.  I told the people behind the counter that I was there for a cardiac ablation and one of the ladies made the comment,  “oh what fun”.  Another lady turned to her and said,” why would you say something like that”.  I think the 1st lady felt a little bad but I commented that it can’t be worse than full on surgery and then the 1st lady just said she was trying to lighten the mood.  They give me a bed and I have to change and get an IV and blood drawn.  I have to say the lady that drew my blood was the best I have ever had. I didn’t even know she did it and she was done.  After waiting for about an hour they took me down to the lab waiting area where they prepped me.  I have to tell you they put I don’t know how many electrodes and grounding pads on me but they were put pretty much on every open spot on my body.  They then shaved the groin area and put a cute little hat on my head.  The doctor showed up and made a joke about checking out a lady he worked on yesterday who stayed overnight just to be social.  We had to wait an extra hour or so because the person who had the room before me took longer than expected.  As the room finally became available they told my parents that the procedure generally takes 3 hours minimum but not to worry until 4 hours have passed.  Originally the doctor told me that the whole thing would take an hour so I was a bit taken aback by that but what can you do there was no backing out now.  So they finally wheeled me into the EP lab, transferred me to the EP table and then hooked up all the cables to the array of electrodes attached to my body.  They put oxygen on, a blood pressure cuff and an oxygen monitor and lots of blankets.  I kind of felt a little claustrophobic but tried to do my best to relax.  It took probably a good half hour to get me prepped and finally ready for the EP study and ablation.  Once ready the doctor showed up and they asked me for the 5th or more time my name and date of birth and quizzed me on why I was there and who was to work on me.  They pretty much made statements all day long about what they were going to do. This appears to be a new standard of practice likely to insure that no mistaken arms get taken off that should be taken off.  

To start the procedure they first numb your groin area with a couple of shots.  The shots pinch and burn a little but not a big deal.  Then the doctor inserts the sheaths that the catheters will feed into.  They put in about 6 catheters distributed between the two legs.  It felt a bit weird to have them put in, kind of a thumping type feeling, but it didn’t hurt or anything.  I was not heavily sedated for the procedure because they believe that too much sedation can dampen the body’s response to the adrenaline used to induce an episode and they need to induce an episode so they can map the heart’s electrical activity and pinpoint where the problem is occurring.  I thought I would feel the catheters inside my body in my heart but I really didn’t feel much at all.  And I am not sure if this is a testament to the doctor or not but when he put them in they were thread into my heart in a matter of a split second.  They have an x-ray machine called a fluoroscope that showed the catheters being thread into my heart.  It was kind of cool to see but I have to say I am amazed that the doctor is able to know where he is at and what he is touching because  they don’t really see a good visual of the heart just the catheters.    One nice thing the doctor said was he was so excited to work on a thin person, the needles didn’t get lost, and he could still have a hold of them.  I found that a bit amusing since I am not that skinny but I am not fat either.  Once the actual mapping started I immediately felt myself have an episode.    The doctor then started calling out numbers and possible arrhythmia issues, avrt, avnode block, avnrt.  The doctor and the techs in the other room talked back and forth and the doctor a couple of times got a bit excited because the screen he was watching wasn’t updating fast enough.  I think there was a real time screen with my vitals and one that could be paused so they can look at what my heart was doing more closely.  A few times he got so excited he started to jump up and down.  I think he is a very high energy doctor and it may have been a little bit of impatience on his part since the screen wasn’t updating or the techs weren’t scrolling at a fast enough pace.  Not sure but it gave me a chuckle.  In any event after about a half hour they all agreed that I had avnrt and the doctor told the nurse to give me a bit more sedation.  I almost fell asleep but all the adrenaline kept waking me up but I didn't mind being awake. It really wasn't that uncomfortable and it was kind of neat to experience the whole thing.  Anyways, when the doctor did the ablation I felt a slight burning feeling and then they had to wait for about a half hour to see if they could induce another arrhythmia at that time.  Essentially every so often a shot of adrenaline was pumped in, you could feel your heart beat faster but it is not the same type of fast beat that you feel with a tachycardia episode.  After the half hour was up the doctor came in a told me that I was a good patient, he only had to look at me funny to induce an episode and he was pretty sure he got it but decided he would ablate a second time for good measure.  This time I felt it a bit more probably because he had just burned my heart and it was feeling the effects of that already.  We then waited another half hour to make sure all was good.  It was and then probably another half hour to take everything off and wheel me out.  So though this procedure usually takes a minimum of 3 hours I was in and out in 2 with very little discomfort at all.  If I didn’t feel a little discomfort in my heart I would not have known anything was done.   And the fact that I was so active at the time having an episode on the first attempt made my time exposed to the adrenaline minimal.  

After I was wheeled out my parents were waiting for me.  The nurse gave me juice and the doctor stopped by to tell me I did great and not to exercise for at least 5 days.  I was then wheeled back up to the recovery room where I started and had to lay still for 4 hours.  There were 2 more juices and a cup of water.  I drank another juice and some of the water.  I probably should not have because after about 3 hours I had to go pee really bad.  Hindsight is 20/20.  If I have to do this again no drinking.  I did not eat and had waves of being really tired but I think because I still had adrenaline in my system I kept waking up.  They also came and checked my bp a lot.  It was pretty erratic but nothing alarming.  It actually to me seemed a bit on the low side.  At about 4:00 I was able to get up and walk a bit.  Once they knew I was steady on my feet they released me.  In at 7:30am and out by 4:30pm.  The next day was a bit rough getting around because they put these big gauze pads in at the site of the catheters just in case you start to bleed.  I was quite short of breath and in a small amount of pain for the first full day afterwards.  My heart rate would shoot to 150 if I walked up the stairs but it only lasted a day.  I really started to feel better quite quickly, again probably because they were able to get in and out faster than normal.  So after a month I still get some pangs and pains.  I actually had a few days where my heart actually hurt worse than it did right after the procedure but for the most part things have gone well.  From what I have heard from others it can take 3-6 months to fully heal.  I have some fluttering from time to time and feel the weird vibration feeling that would kick off and episode from time to time.  I had one at work while talking to my boss.  I just leaned back into the wall, felt the vibration but then the tachycardia did not kick in so all appears to be fixed.  I did however, feel some really strong heart beats a few hours later.  I noticed that feeling after one of my longer episodes.  A 3 hour one while at work during the last week before the ablation.  I left and got into the car to drive home and felt some strong heart pains but then the arrhythmia stopped.  Not sure if my heart is stopping or if it is just skipping beats and resetting itself.  I felt the same pains while at work about a week after the ablation and then felt them again a couple hours after the false start.  I think they might be pvcs.  Others have said the flutters will go away but not sure, this may be something I will have to deal with for the rest of my life.  Not a big deal.

So now it is 5 weeks past the ablation and the pvcs are getting a bit out of control.  They seem worse than they were before the ablation but maybe I am just noticing them more.  I kind of think that the tachycardia reset the pvcs but this is new to me so I am not sure what is going on.  I read that pacs and pvcs are essentially irritated areas of the heart that send an electrical charge that disrupts the sino atrial node and causes the heart to beat twice in a row and then pause as a consequence.  I am hoping after some time my heart will heal and the pvcs will go away but right now I am having trouble laying on either side, leaning forward and/or eating without tripping them up.  They have been pretty constant the past couple of days I am thinking about contacting the doctor but I think I can hold out until my follow up appointment in another month.  I am not sure how I acquired the pvcs.  Likely on one of the longer episodes or during the surgery but once I had them my heart got caught in a vicious cycle of pvcs triggering svt.  Now that I don’t have the svt the pvcs are being left unchecked and may now be a constant companion.  I guess I need to chalk this up to not being proactive about the condition but in my defense I really was naïve about the whole thing.  I truly didn’t think there was anything that could be done about it.  Well time will tell how I will feel in six months.  I am keeping good thoughts that this time next year all of it will be a distant memory.  Until then I do feel good about having done the ablation.  Knowing now what pvcs are and that I had that as well as the svt I think the ablation was the best thing I could do to help my heart regardless of what the medical community says about either condition being of any consequence.  I can’t imagine weekly episodes of a super-fast heart rate and daily pvcs would be good for my heart in the long run.  So if anyone is out there reading this and are considering an ablation it is well worth a try to at least get a little of your life and health back.

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Avatar universal
by hd84ironhead, Feb 29, 2012
amazing story.....thanks for everything that you posted.  by the way, its been 6 months, how are things now?

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by star1224, May 04, 2012
I am about to have the ablation done next month I am so scared how are you doing now? and what is pvcs?

Avatar universal
by esjaydee, May 27, 2012
Thanks for posting your story.  How are your PVCs now?  I too had an ablation for svt (AVNRT).  Procedure was in March.  Since then no svt episodes (thankfully) but very frequent PVCs.  I never had pvcs at this frequency before   Not even close   I feel them even without any of the usual triggers such as coffee, stress, chocolate, etc.  I can't help but think these are related to the ablation procedure.  They have caused quite a bit of stress and anxiety and am now wondering if they will remain or if they will eventually subside.  EP has seen the recent episodes and is not concerned.  I am however as there have been some multiple runs of beats.  I almost wish I never had the procedure.  I'd be curious for those who had the same procedure if they too experienced PVCs and if so, if they eventually went away.  Thanks for any insight.  

Avatar universal
by demps321, Jul 06, 2012
Amazing detailed story. I feel so much better about knowing what to expect when i have my ablation. The more i read success stories the less worried i am feeling.

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by Rachhxo303, Nov 21, 2012
Amazing story!! I experience PVCs daily. Hope all is well. Keep us updated!! You are in my prayers God bless

Avatar universal
by ka1218, Apr 21, 2013
Thanks so much for the story!

Avatar universal
by jodi1954, Aug 27, 2013
Thank you so much for sharing your story....  I will let you know how mine goes in a couple of weeks....  Jodi

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by janyde, Nov 24, 2013
Thanks for sharing this in detail. I also related to much of what you said about the procedure when I had mine last Dec.

Whether I do it again remains to be decided yet.  

Avatar universal
by Pharper, Feb 22, 2014
I don't have a diagnosis yet, but am having tachycardia a lot. For several months now, I am awakened with heart racing out of my chest. I do have MVP and Dysautonomia. I am wearing 30 day monitor. I do so much appreciate your detailed story. If I had to have this procedure, I will know what to expect. God bless you! I hope everyone here continues to get answers and success with their heart issues.

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by researcher09, Apr 04, 2015
Hi Michelle,  Hope you are doing well.  Did your PVC's settle down?

Avatar universal
by ZEBRA_XXX, Jun 11, 2015
I'm getting one done soon trying to schedule it, its a catheter ablation for svt, 12yr old girl 5ft 65 lbs. Really really scared. I'm going to be asleep the whole time but if they are doing the mapping won't I wake up because of adrenaline? Terrified! And my doctor is a male. I don't want it but my dad said its for the best. I am so so so so so so nervous! Terrified of needles and have eds ( ehlers danlos syndrome, rare syndrome born with it no cure... Almost all my joints are dislocate able and I can't gain muscle, I bruise extremely easily, and scratch as easily as well so I'm worried about that too. I can't open a bottle of water without bleeding, when I walk my knees try to dislocate. And I bruise by kneeling for 2 minutes.) I don't fancy being naked either. IVs just no, but that's how I'm going to be put to sleep while they do it. If the doctor cuts a whole in my leg , that won't heal for at least 4 months, bruising doesn't heal either.I really am scared.

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by Cyanide_Kandy28, Sep 03, 2017
Amazing story. I am quite similar.  I hope now days you are holding up better. can you answer a post of mine please? No one has answered in days and I really need some help.

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