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My WPW came back!
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My WPW came back!

I was diagnosed with WPW when I was 19 years old. I put off the surgery for 8 years mainly because I was so afraid of it. I was put on a beta blocker called Sotalol & for the next 7 years I lived a basically normal life -- only experiencing rapid heart beats 1 to 2 times a year but I was able to get those under control quickly by bearing down like I was pushing out a baby. On January 7th of this year I woke up at 4am & my heart was going extremely fast. Faster than I've ever felt it go before. I tried several times to slow it on my own but wasnt able to. I had my boyfriend take me to the ER. My heart was racing at 246 beats a minute. I litterally thought I was going to die. I scheduled an appointment with my cardiologist & 4 days after my appointment (Jan 21st) I had the ablation. It was successful.

Yesterday I went for a walk. While walking I felt my heart speed up - like it would before the ablation. When I got home I tried fanning myself to cool myself off but the rapid beats continued. After several attempts to slow it myself I had my boyfriend take me to the ER. My heart was going 176 beats a minute. The ER doc was able to slow my heart down & did an EKG - the EKG shows the delt wave is back. He said judging by my EKG it looks as if my extra electrical system as reopened.

This is devistating news for me. I only had the surgery 3 months ago & its already back!!!

So I guess my questions are: is it common for it to reopen? And how soon can I have the ablation repeated. Tomorrow I am going to call & try to get in to see my cardiologist - but I'm afraid he's going to tell me that I'll have to wait to have it repeated since I had the ablation done so recently. When I had the surgery they told me there is a less than 5% chance of it ever reopening - when I asked what would happen if it did reopen I was told not to worry about it because that wont happen...well it DID!
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1137980_tn?1281289046
First off Katie you need to back up a little bit here.....i have a pretty heavy duty medical background as well as experiencing some pretty severe heart problems in my past and you need to be aware of the fact that E.R. docs live by the creed of "treat em and street em" meaning get you in and out as fast as they can so that they can make room for the person behind you and basically it goes the same for on call heart docs....they generally only see you once until you get to your own heart doc.  I cannot in my wildest dreams imagine how the heck that doc knows that your electrical passageway opened back up w/out doing an E,P. study on you...that is just crazy to me and sounds like he/she may be having a typical "God" moment.  Do not and i repeat do not fear this until your E.P doc tells you it is so.  Ablations take up to 6 months for them to know if it is a fail or not and you have experienced EXACTLY what i went thru 4 months after the procedure.  Your heart is still getting used to the idea of following the correct pathway rather than the one it has gotten used to which was the wrong one.  When we go thru the ablations so many things happen to our hearts...including the fact that they are swollen terribly and that is why your heart doc told you not to go all out with exercise or heavy lifting for X amount of days so that you don't irritate it.  Your doc is absolutely right it is less than 5% that experience a fail due to to pathway opening again....you have to remember they either burned it causing scar tissue to build up.....RF'd it thru radio frequency waves to re direct or used Cryo and froze it.....the chances are slim to none trust me...relax a little and don't let that doc scare the bejesus out of you until you have all of the facts.  I know that my heart rate went into the 300's after i got stuck on stupid and walked up 4 flights of stairs in a winery in the middle of no where....not a good thing....my heart doc was mad...the E.R, doc told me it was a fail......whatever.....i listened to the heart doc...learned to listen to my body and just about at the 6 month mark viola' the new me emerged.  Again there is no way in medical science that you can read the electrical passageway of your heart thru an EKG common sense would tell you Katie if they were able to do that why did we all have to go thru the mapping before the procedure?  No way...relax you may just be having re bound because you over did it a little.....i've done it and trust me almost everyone on this site that has had an ablation has gone thru it at least a couple of times after our procedures.....i know you're going to post and i;ll get the chance to tell you i told you so and whatever you do don't be panic ing and scaring yourself...you may never ever have another episode or you may have a smaller one.....all in all its a crap shoot until you make it to the 6 month mark....no you aren't going to die.......chances are it was just re bound....and if you are scared when you talk to the doc ask him or her if you are a candidate for a low dose of beta blocker for extra insurance until you hit your goal month...i did and was super happy because i never had another issue after that...we are all different Katie but in many ways the same when it comes to the matters of the heart!!!!
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Avatar_f_tn
Trust me I've been trying not to scare myself. I'm trying to just remain calm until I see my cardiologist & hear what he has to say.

I am curious tho...what do you mean by mapping? Mapping before the procedure? Is that something they do while you're having the procedure done? Just so you know I was knocked out for it so I have no idea what happened. I had the option of being awake or being put to sleep & I choose to be put to sleep just because I was so nervous about it. One minute the lady was asking me if I felt sleepy which I responded by saying "no" & the next thing I remember is waking up in my hospital room afterwards LOL

Ok I'll tell you this -- a few years ago when my doc & I were discussing the surgery I asked him how he could tell I had WPW. He pulled out the EKG they did before he came in the room & showed me on the EKG how the line didnt go straight down, how it sort of slanted towards the bottom (I dont know how to describe it) & that it was called a Delta Wave which indicates the extra electrical system. The morning after I had the ablation the nurses came in & did an EKG on me & then my cardiologist came in to give me discharge instructions. I asked him how he knows that its closed & he showed me on my EKG how the delta wave is gone. When I was in the ER yesterday I asked the ER doc to see my EKG & he showed the delta wave. He printed out the EKG I had done at my follow up 2 months after the ablation & my EKG that was done yesterday & showed me how the delta wave was not present a month ago, but is present yesterday which he says means its reopened.

I had a LOT of PVC's after the ablation. So bad that I called my cardiologist & he put me on Atenolol. I've been on Atenolol since the surgery was done & at my appointment last month he cut my dose in half & told me to take 25 mgs for the next 3 months then he'd cut it down to 12.5 for a while & then I'd be done. So I've been on a beta blocker. I'm still on a beta blocker! The ER doc up'd my dose yesterday back to 50 mgs.

Hopefully I'll be able to see my cardiologist this week & we'll go from there.

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1137980_tn?1281289046
Hi.....it is normal to have runs of PVC's after the ablation trust me...we all go thru it Katie....the only way you will know for absolutely sure is to see your heart doc....to me seeing a delta wave could just be an isolated incident and like i said you have to give it time for the ablation to do its job.  As far as being on the antenolol that is no biggie....i am still on it 3 years later and am so happy to have the extra insurance added along w. the ablation that i had done.  I too take .025 and it does it job for me and i have no side effects whatsoever.  In having a conversation with many people on this forum they too are on the same meds after their ablations.  I call it my safety net.  Your heart is still adjusting to the new passageway that was closed off the the electrical pathway is re routing itself so to me it would not be uncommon to have a sneaker get thru.  As far as mapping i too was knocked out sort of.....you were actually probably awake during the procedure and didn;'t know it since they give us all the amnesia meds during the procedure so we don't remember anything.  Mapping is the doc sitting on a stool for about 45 minutes watching the electrical pattern of your heart in 3D to determine where the problem areas are and to set off arrythmias to make sure they get all of the trouble areas.  In mapping they are able to see more than the exterior of our hearts where an EKG will determine with a strip different types of "waves" that give them a general idea of what they are reading.  It is not an in depth reading by any means....mapping covers the entirety of the heart as much as they can without shooting dye into our veins in order to check the majority of the interior.  There is alot of room for error w. EKG's and the thing to remember is that E.R. docs are taught the basics but a heart doc has dedicated their entire lives to know absolutely everything that they can about the heart.  That is why they are specialists...kind of like humans in general...we are all the same basically the same  and some thru education and experience become the Bill Gates of the world....some will work for Macys,....some will become police officers.....all are chosen professions.....E.R, docs are great and save lives every single day but the heart is not their specialty....emergency medicine is and i doubt if any of them have performed ablations (maybe a rare one)....that is not their training....i would wait until you see your doc this week and let them make the decision on what caused the episode but like i said we all have gone thru it almost up until the 6 month mark...for me i would relax and know that you now have a safety net around you w. the meds.....
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Avatar_f_tn
Ok - I have an appointment to see my cardiologist next week Tuesday. Last night when I went to bed I felt my heart speed up on me again :-S I was able to slow it on my own. I dont want to live like this anymore :'( The 3 months that I spent rapid heart beat free were wonderful & I'm hoping that we can get this fixed again & keep it that way!
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Avatar_f_tn
Ok, I saw my cardiologist this morning...the good news is the WPW has not returned (YAY!) the not so good new is I am now diagnosed with A-fib. My cardiologist is not very good at explaining things so I've been trying to look some information on it but it makes me so anxious to read about it. He's upped my dose of Atenolol to 50mgs a day & now I have to take an asprin everyday too. Since its only happened 1 time he see's no need to treat it other than with medication but wants to see me again in 3 months. He said its a more complicated surgery that he doesnt do & he'll have to send me to the Mayo clinic if the symptoms worsen. Do you know anything about A-fib?
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Avatar_f_tn
I have had 2 incidences of A-fib.  I was taking atenolol and even upping the dosage to 50 mg for me didn't help.  I was switched to another beta blocker, bystolic, which seems to work better for me at controlling my heart rate.  I also take 2 baby aspirin a day.  I worried about it constantly for a while but that is really pretty counterproductive.  The main risk of A-fib is blood clots, you are taking aspirin, so that should be ok.  The heart rhythm itself will not kill you...it can lower your blood pressure and make you feel like crap but that's about it.  Plus it scares you to death when your heart is all over the place.  But try not to worry...it may never happen again and even if it does, you will be ok.  Lots of folks are in permanent a-fib and live perfectly normal lives.
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Avatar_f_tn
I'm trying not to overly freak myself out. I did calm down enough to do some reading on it but I still have lot of questions. Like is this something thats going to go away? Is my heart doing this b/c I just had the ablation a few months ago or is this something I'm going to have the rest of my life?

I'm just so frustrated right now because when I woke up from the surgery & was told it was successful the first thing I did was cry thinking about how drastically my life was going to change & improve - I even started to plan a trip that I've wanted to take since I was a kid & thats to Egypt to see the Pyramids...now I get diagnosed with another heart condition. Will there ever be an end? Will I ever just be normal? I get one heart condition all cleared up only to get another one! I'm so tired of it.
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88793_tn?1290230777
Don't feel sad.  Enjoy your life and do what you think or plan you would like to do.  Don't let the heart control you.  You should control your heart.

My cardiologist told me that he would expect my A-fib comes one day.  I'm not sure, he's expecting the A-fib would come is because I had my ablation or wpw?  It is in their head.  They're already know, most of them will return with A-Fib.  When and how long after the ablation????  The doctor still in research and put all the result in conclusion by average how long the A-Fib will hit after ablation.  I think I hand up my homework for them and you too.  

Well, my wpw was diagnosed at 15 years old.  I had my His bundle ablation at 27.  My A-Fib hit at 20 years later after the ablation.  I'm still living with wpw tho.
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Avatar_f_tn
A-fib could just be your heart is still somewhat irritated from the ablation.  I know that A-fib is very common after heart surgery, would think the same would hold true with ablation.   Try not to sit there expecting it to come back, it will make you crazy.  I know how frustrated you must be but there is no reason not to continue your planning and carry on with your life.  Do not let this control you.
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Avatar_f_tn
Ok :) Thank you!
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