Heavy Decisions…Having a REALLY Hard Time

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Today I had my appointment with my EP (electrophysiologist) to follow-up after an event monitor found several events including PACs and a run of SVT. Some things were reassuring, some confusing and some upsetting.

She drew pictures and explained to me what she thinks is happening. She called these irregular events – ECHO BEATS. This is a term I have not heard and cannot find much about it. She is polish and perhaps they use different terminology?? She said echo beats were the beats that precede an SVT event. On my results was a run of 7 SVT beats. She showed me the early beats (which I think are the PACs) on the graph. And she asked me, “You must be really sensitive, huh?” Ummm yep!! Telling you, I feel EVERYTHING.

In her picture she showed a loop and said the beats were getting trapped in this loop created by an extra pathway. I have done some reading online and cannot really tell if this would be AVNRT, AVRT or AP. While showing me the readout (ekg-style), it all just looked like PACs but in the SVT event it looked like a bunch of PACs right after one another.  I never felt the fast rate of the SVT, only the pause after. I always feel the pause…it simply feels like your heart stops for a second.

Because I didn’t feel the fast rate, we want to make sure I am not having more than we think so I am wearing a lovely Holter Monitor for 2 days. No shower or bath ALLL weekend. SUCKYYYY!!! I am addicted to hot baths in the winter. I will also not be leaving the house until I can take this off on Sunday. And she doesn’t want me to take any of my anxiety medicine so that she can see it at its worst. GREAT! This will be a blast. (sigh)

I had a bad night last night and the anxiety med helped I think. It was skipping every 30 seconds for 10 minutes straight. I got so panicked that I started shaking and got super cold. I haven’t felt like that in years.  Anyway…

She showed me the wires/caths she uses for her EP Studies/Ablations. She told me the name, but with her accent, it was hard to understand. Something like STEROXIS SYSTEM or something like that. She showed me the ones most hospitals use which were stiff and hard to move compared to this new kind which are more like spaghetti. They are magnetized and they can control with within millimeters. She said because of those, there is much less chance for error.

Q&A…

  • What is the success rate for ablations? With the problem she believes I have, she said 99%. She said if the extra pathway is too close to my natural pathway, she simply won’t do the ablation.
  • What is the worst thing that can happen to me if I do NOT get an ablation? She said it is POSSIBLE (about 11% I think she said) that I could end up with AFIB. If that happened, I would then get an ablation, but the success rate might not be as high as it can come back. AFIB can have a risk of stroke or heart failure…eventually…MAYBE. She promised that none of these would cause sudden death. But she also knows how scared I am…so is she not telling me things to stop me from worrying???
  • Why have the ablation? Biggest reason is quality of life. She must have noticed my tears and phone calls and huge list of questions. She can see these are affecting my life and making me unhappy. She said, “Why on earth live that way if I can fix it in a couple hours and you will never have to see me again.”
  • Would I be sedated for the procedure? She said I would be asleep the whole time. I asked if being sedated would make it hard to trigger the problem (they need to do this in order to fix it). She said, “Oh, I will get it going, don’t worry.” I told her I have a huge fear of adrenaline. She just said…you will be sleeping, you won’t feel it.
  • I asked if prior pot use caused this. She said no. But that it was good that I quit because it isn’t good for my mind with the anxiety which makes the beats worse.
  • Can I have a glass or two of wine? Yes, but only white wine. They are finding that red wine can be a big trigger for many people. Weird. And not a lot, only a glass or two.
  • Do hormones play a role? YES!! And it surely WILL get worse the closer I am to menopause.
  • Is this genetic…could I give this to my daughter? No.
  • On the event monitor, every event was recorded by me…it never automatically went off due to a dangerous event.
  • How does the Beta Blocker help? Probably more for anxiety…it slows the heart rate too.
  • When should I worry or go to the ER? Never. (LOL…seriously??!!)
  • Can stress cause this? No, but it makes it worse.

So, she is REALLY pushing for this EP Study/Ablation. She said she cannot be sure what kind of SVT I have until she does the study. It would be done in Milwaukee. She acted as though it was a no-brainer. Although she did say I am in no real danger if I do not get it. She said it really is a quality of life thing. And she thinks I wouldn’t be as fatigued if this was cured. I have been majorly fatigued since my teens and they have never been able to tell me why.

But there are risks to the procedure which include stroke and death. Those rates are pretty low, but WHAT IF?? Is some discomfort and anxiety a few times a month worth possibly dying or having to have a pacemaker???

And let me kinda explain this ablation thing to ya…

I would be put under with a general anesthetic. I have had this once before and it scare the piss outta me. And this time would be worse because I would have to be intubated (I did not have to be last time because it was so short). Then they shave your peek-a-chu and make a couple incisions in your groin area. Through those incisions they thread wires up to your heart. They then put adrenaline (or a like substance) into your IV to make your heart go into the irregular beat. Once they can map the beats and see where the issue is, the then burn it with the tip of the wires…essentially burning a scar onto your heart where the extra pathway is. UGH. It sounds so awful.

I have a huge decision to make and it scares the piss out of me. I will see what this Holter reports probably in about a week. I will then get a second opinion from a cardiologist at a different hospital as well. I am doing that only because I know that with specialists (an EP is a specialist) – they often are more eager to perform their talents. I’d like to see what a cardiologist has to say and since my mom kinda knows him through work…why not, right??

Okay. So…I would LOVE to hear what you have to say. I am sorry this is so long. I hope I didn’t leave anything out.

So, what should I do? I really need input, advice, etc….

By the way…thanks for listening!!

 

UPDATE – I found the info on that new cath system she was talking about – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586159/

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About Heather Rayne

I am a mom, wife, writer, volunteer, eater of food, lover of animals and avid TV enthusiast. I am opinionated, honest, compassionate and sensitive. I can also be difficult, hard headed and emotional. I consider myself to have a great sense of humor and am very attracted to that in others. I am striving to live an authentic life. I am attempting to learn how to find happiness in the now. I always have hope to be a better person. That being said - I can be vulgar, negative and even a little bitchy at times. I say what I mean and my filter is often dysfunctional. With me, what you see is what you get. I have strong opinions and am quick to speak my mind. This can cause problems from time to time but I do not ever intend to hurt or offend anyone. With that - be warned. I do hope you enjoy my site. Thanks for visiting and have a swell day.

6 responses »

  1. Pingback: Answers! A Second Opinion Success « Ramblings of a Neurotic Housewife

  2. Pingback: Heart Anxiety – I Cannot Go Through This Again!! « Ramblings of a Neurotic Housewife

  3. Heather, I thought that was you! Kelly Flannery is a friend of Erin’s and your post showed up because she commented on it! That’s how I saw it! Glad I could help. Really sorry about your dad! You were so young when that happened! Life certainly is not kind to us sometimes. I also hate those skipped beats! I guess they can’t stop that, but according to my doctor, those skipped beats can cause the svt. So, when you have the ablation, it can’t find those bad pathways. But I still get them occasionally, and I think that still scares me! Our minds are a powerful enemy sometimes! It makes it hard to control our emotions. I too worry to much! Like I said, I think the doctors should be more comforting and explain things a little more when your heart is involved. Hope you find some answers and don’t be afraid of the ablation if you decide to have it done. Your life will be so much better I think. Nice talking to you! Good luck and you have my email so feel free to contact me if you have anymore questions. Ellen ejkiery@yahoo.com

    • Ahhhh I get it now 🙂

      Yea, that is one of the things I need to find out – about the skipped beats. Because really, if I am going to still have those…not sure it will be worth the risks. I am just going to take this step by step.

      But I will likely take you up on your offer with email questions – so you may regret that offer LOL.

      My mind takes over far too much. Maybe something in my head should be ablated 🙂

      Thank you very much. And I am so glad to hear everything worked out for you!!!

  4. Ellen,

    I remember you well actually 🙂 I took dance with Erin for a little while and we were school friends in middle school. I spent the night a time or two I do believe. I just looked Erin up on FB and am surprised we are not friends. I will have to request her. I am surprised you saw my story on her page!!

    Either way – THANK YOU SO MUCH for writing to me!!! It means more to me than you know.

    I have felt like crap since I was a teen and I wonder how long I may have had this. I was diagnosed about 8 years ago after a sustained rate of 180 for 4+ hours sent me to the ER. Before that, I knew something was wrong for years, but they kept telling me that it was in my head…all anxiety. Very frustrating. Now I have a hard time trusting anything Drs say. Anyway, since the ER, I have been on beta blockers ever since. But my constant worry about my heart really is hard on me and my family.

    My father died at age 46 (I was 23) while I was alone in the room with him. Since then my fear of death has been out of control. I have been trying to manage theraputically/mentally. But I now wonder if only my heart was normal…perhaps that would be easier to get over. Having a child really made things worse with my fear of death…so afraid to leave her.

    I have a lot of thinking to do. But I can say for certain that if I was having events like you did, it would be easier for me. NOT THAT I WANT THAT TO HAPPEN!!! I should knock on wood or something…gesh. But that does sound awful to have to go through. Now, my main issue is the skipped beats. They feel so awful. And I am not so sure ablation would help those.

    My 2nd opinion will be with a Dr. who also works at St Lukes in Milwaukee. Probably in a couple weeks.

    Thank you again, SO much. Really it means a lot to me!!

  5. Heather,
    This is Ellen, my daughter is Erin Janiszewski. I read about your situation on Erin’s facebook. I felt compelled to write you and tell you that I had an ablation about 15 years ago! I was scared to have the ablation also, but when I ended up in the hospital with a pulse at 238, I decided I needed to do it. Also, the beta blocker made me so tired and it really didn’t help, because I had an attack on the medication. I studied the internet and read all the information. Really, the procedure wasn’t bad at all. The worst part was you have to lay flat on your back for a about 3 hours after the procedure. The procedure itself is nothing. They put you to sleep. All you have to do is relax. You don’t feel any pain in your chest or anywhere else. I stayed over nite, wore a monitor and went home the next day. Rested up and went back to work in a few days. It really does sound much worse then it is! Trust me! They worst part for me was almost passing out and having to be rushed to the hospital. They actually had to stop my heart twice to get it back on track. So, for me the ablation has been a god sent. I couldn’t imagine living without having it done. I have had panic attacks, which I attribute to having such scary moments before the ablation. I’m a type A personality so that doesn’t help either. But if I wouldn’t have had the procedure done, I would be a real basket case! I had my procedure at St. Lukes Hospital in Milwaukee. They have a group of doctors there. I’m sure the new procedure is much better and easier than what I had 15 years ago. No one ever talks about how this messes with your mind. It’s scary and they can tell you all they want about how it’s not life threatening, but when it happens, it really panics you! I’m a person you can handle just about anything, but this really did send me for a loop! I know how you are feeling! Try some meditation. I want to say that I also I had my problems start at 46 or 47, right after I went into menopause. I’m sure that’s what really made it worse. I remember have 1 or 2 spells when I was younger, but nothing as serious as the ones that landed me in the hospital with a diagnois of SVT. I decided to do the ablation because of the attacks, but also my age. I didn’t want to wait until I was older. Plus, living with the attacks was not an option! I was too scared it was going to happen again at anytime. So, my advise is make sure you have a good doctor, go to St. Lukes, Milwaukee. Relax, you’ll be fine! The success rate is so good and I’m here to tell you, its not a bad procedure. You can contact me, if you have any questions. Also, I have talked to quite a few other people who have had the procedure, (over the past 15 years) and they did fine also. You would be surprised how many people have had this done. Take care kid! You’ll be fine! Ellen

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