Help! Need some opinions!

[btodd11]

Hi. I'm 35 & have had SVT since I was 16. I've had 4 ablations since then, the 1st @ 19, 2nd @ 20, 3rd Aug 08 & the last one Oct 08.  I also have Lupus on top of it all.  I was still having trouble with it after my last one so I was put on Diltiazem.  It seemed to help by making it less frequent.  It really doesn't beat that fast, only 100-110, and only about 30% of the time.  However, the pounding is what bothers me most.  It literally is draining the life right out of me, and already having Lupus, I really can't afford to be slowed down any more than I already am.  My EP told me that if we have to ablate again, he would have to ablate my junction box & put in a pacemaker.  So I vowed to tolerate it to the best of my ability so I wouldn't have to do that.  However, my Tricuspid valve was severely leaking because the right side of my heart was enlarged during all of my SVT episodes last year.  Since my heart rate is somewhat under control, it is now only leaking moderately.  Yay!  Last month, the surgeon told me if I can keep my heart under control, it will keep it from becoming enlarged again & eventually failing.  My problem?  It has now started beating fast again & pounding about 70% of the time.  I'm struggling to get sleep at night because it does it all night long.  It's beating so hard that I'm short of breath, sick to my stomach & it feels like my head is going to pop off of my body with every beat.  I guess I probably need to go have that last ablation done so I don't cause my heart to enlarge again, but I am scared to death.  Something about complete heart block & a pacemaker that just makes me nervous.  I've been in and out of the hospital my whole life, so I consider myself to be pretty brave when it comes to surgerys.  But for some reason, I'm not so brave this time.  I really don't know what to do??  I don't want to have to have this surgery if I don't have too.  And I'm not up for a second opinion, because this is already my third.  Besides, my Lupus was causing my kidneys to fail at this time last year, so I saw about 20 different drs in 2008 alone.  The thought of going to another one & starting over just makes me sick.  Anyone got any opinions, ideas, similarities, etc??   I guess I'm just looking for someone to talk to about it because I can't seem to squeeze 2 words out of my husband.  (ie-if he doesn't talk about it, then it's not happening)  Anyway, thanks for reading my lengthy story.  Sorry if it doesn't make any sense.  It made sense in my head.  LOL  Have a wonderful day!  :)

[btodd11]

I'm so sorry to hear about your husband.  It must be difficult for you both to go through that.  I wouldn't wish it apon anyone.  It has definately been challanging trying to manage both & trying to decide what symptom is from what illness.  I do try to be more careful so I don't run myself down.  I have my limits & I know what they are, even though it took me a long time to accept it.  But when I try to slow down, my SVT expends mostly all that I have left.  That's why I should prob get this next ablation.  I really can't afford to be slowed down anymore than I already am.

I wish you and your husband the best in your times of distress.  I would be happy to answer any more questions you have about Lupus if you want to drop me a message.  The HR forum prob doesn't want to hear all of the Lupus chit chat.  :)  Put a smile on...it's bound to get easier.

[banglamom]

Just as the decision for ablation came in the form of a crisis, really so did the decision for a pacemaker.  I guess I am not too swift at these decisions.  

Lupus, being autoimmune, can really be affected by stress.  So.. do you have to be more careful or does add infinitely to the exhaustion equation?  In the midst of the horror of this year, my husband was diagnosed with lupus.  It has been devastating.  We are trying to figure out life still.

[btodd11]

You don't have to be sorry that it's long.  It's interesting to me to hear about other people's situations.  I've always thought I was the only one...now I know better.  :)  

I'm very glad to hear that you feel much better with your pacemaker, although, I'm sorry that you've had to go through all of that craziness.  It scares me to think that I would have to have a pacemaker & still have trouble with my HR.  However, I think my EP was talking about ablating my AV Node.  I guess that's different than what you had done?  I don't know if it all amounts to the same in the end?  I need to brush up on my cardiology!  :)  Anyhoo, I fully understand your anxiety about the ablations.  My first 2 were 8 hours long, both coming out knowing that they didn't take care of it all.  That's disappointing.  So, I was a little reluctant to have the next 2 done.  But with a different EP & more technology, I was hopeful for the best.  I think I'm just gonna suck it up & have it done again.  With my Lupus & my crappy kidneys already working against it, I probably need to try to do whatever I can to prolong my hearts life.

I wish you the best!  I'm gonna be brave!!  If I stumble across any information on your situtation in the meantime, I'll let you know.

Thank you!!  :))  

[banglamom]

well, you found someone with some of what you were looking for.  I have had 3 ablations too and and got a pacer too.  Honestly, I have said it many times.  I tell my ep md that too.  My pacemaker was the highlight of 2008.

2 years ago, I was barely willing to let them do anything except maybe a bit more of the meds I was already on.  BUT, as you know, if you just let the thing run away and try to ignore it... it not only gets worse, it causes other problems.  I have experienced going 6 months with a rate of 180.  It was exhausting.  I finally had them changing meds and when they were monitering rhythms on an event moniter, found they were no longer sustainable rhythms.  So, with no notice at all, I finally had to relent to the ablation.  It, of course, wasn't too bad... but it was minimally effective.  That was a bold step for me.  All I had told my husband I would do was to get a DNR tattoo on my sternum.  At my ep suggestion, he did a second ablation.  They did 25 burns... 6 hours.. 2 ep mds..  It ended with the ep coming out to my husband in the waiting room and apologizing that they could not stop it.  I came away feeling like I had been run through a cheese grater.  I also felt like.. THERE, I did what you all wanted and now I am done.  I took more and more meds as they tried to manage it medically.  It was hard and they decided to ablate the sinus node completely and make me fully paced.  I was ALL for it.  The third ablation was quick and completely disappointing.  When they tried to ablate the spot, which they had nailed down, they were pacing my phrenic nerve.  If they had cut it, I would also have trouble breathing on my own.  I was resigned to being pacer dependent, but certainly not ventilated.  (There is a phrenic nerve pacer, but it is a nightmare.)  SOOO, it is still med treated for the rhythms and the pacer supports it.  Surprisingly, my pacer handles 80-90% of the rhythms.  It is rate responsive.  It speeds up when I walk or breathe faster.  It will only slow to the parameters set on it- mine is at 60.  

I still have lots of problems with both the rhythms and the meds.  Thankfully, the pacer is the only reliable thing in the equation.  I love it.  I finally relented and said GO ahead, do anything.. cut me in half.. just fix and the answer was, they can't.  I'm still struggling with what to do.  Don't know.  Let them TRY to fix it.  If it as at all an option, find a way to fix it before it damages your heart more and without all the heart medicines.  Be invasive and interventional, be brave.  If you find someplace that can ablate a sinus node without taking out the phrenic nerve, I would go to Saturn!  Let me know if you would.  Sorry this is such a long post, but I hope it is helpful.  Blessings to you!

[btodd11]

I'm at a major heart center now.  Although I probably should, I can't really afford to go anywhere out of state.  I've never heard of Natale.  I have some friends that live in Texas.  Maybe I'll check it out.  Thanks for the help!  :)

[tsco]

Sounds like you need to go to a major heart center.  I know Natale is the worlds best and is in Texas now. I get sick of feeling like a guinea pig too.
Don't settle for puzzled looks, it's your heart. I'd talk to someone else.

[btodd11]

Four months at 150bpm, are you kidding me?  Wow, that must have been awful.  :(  I can't even imagine...

Thanks for your understanding.  That's exactly what my whole hang up is, "this had better be the LAST time."  I don't really know the specifics of my arrythmia, and to be quite honest, I don't really think my EP knows.  I think he's just ablating with hopes that it will be taken care of.  The dumbfounded look on his face when I'm back in his office in a month says it all.

Yeah, I've tried Flecainide.  It worked for a while, but then it all comes back.  Just like all of the other meds I've tried.  Besides, I'm to the point where I don't want a band-aid (so to speak) anymore, I just want it fixed and gone; like lots of others, I'm sure.

Thanks again!  :))

[tsco]

I totally sympathize with you. I have also had 4 ablations. I am 47 and my SVT stuff started 11 years ago. My heart goes into stubborn periods where we wonder if it will ever convert back.  I went once for 4 months at around 150 bpm waiting for an ablation.  
I agree I do not want a pacemaker if I will have the same problem. I think with certain SVT's it is pretty certain if the rythm is next to your node they can burn it and place a pacemaker and the rythm is gone. I think with ectopic beats like pvc's and pac's they will remain with a pacemaker (My opinion). I would want a freakin guarantee the SVT can be ridded if I had node ablation.  I would also get a second opinion from a very specialized doc like Natale or Scweikert at a specialized clinic. I still have SVT (little less stubborn) and only at odd times (over exert, twist, bend over quick) but really have these ectoic beats that drive me crazy every day (almost). The med Flecainide currently is pretty effective in reducing my SVT, have you tried it?

[btodd11]

Thanks for the info!  I really appreciate everyone's thoughts on this subject.  It seems to make things a lot easier when you know that someone else has been through it also.  I suppose now I should just stop being a baby & go get it done.  I'm afraid if I wait any longer, more complications will arise.  Just hope that it's the last time.

Hmmm, decisions, decisions...

:))

[ireneo]

Bits and pieces here: my Dad had a pacemaker/ICD and it was wonderful. I also have a young friend with the same thing (she has heart failure). You should see her go. More energy than I have; of course, I'm a lot older. Somehow the pacemaker can go faster when needed. I don't understand the technology of that. Getting the AV node ablated won't be any different than your other ablations (I've had 3). While you're in la-la land, they'll slip in the pacer. I was with my Dad when he had his replaced and he was in and out of the office in no time. It's just hard to keep your left arm down for a couple weeks till things heal. Then you're ready to roll.

I understand about the pounding heart. It's impossible to get to sleep when it's thunking along like that in your chest and head. Since your heart is already compromised with valve issues, you probably should consider getting the pacemaker to keep the heart rate down where it belongs.

Lupus can be hard on the heart too as I'm sure you know. My daughter-in-law has lupus but so far her heart is behaving itself. All the other stuff is bad enough.

Let us know what you decide.

[btodd11]

Thanks, Jerry. :)  I think that my biggest fear, at this point, is that I have the surgery & still have problems with SVT.  I can only hear, "this time it should be fixed," so many times before it actually happens.  I don't really know if ablating my AV Node is a 100% cure for my arrythmia or not?  I don't want to be right back where I started, only with a pacemaker this time, you know?  I guess these are probably questions that I should be asking my EP, huh?  :)  He just doesn't seem too eager to fix the problem.  Perhaps I should call him...

Thanks again  :))  

[Jerry_NJ]

Sorry to read you're going through so much and without sleep it becomes especially difficult.  Also sorry no one with experience with ablations and full pace maker support haven't responded.  It must be they simply haven't logged on in the last time period.

From what I've read pace makers are very reliable  and work very well when in controlling a regular HR (hey, that's why they are called : >/ ).  I don't understand how they work relative to speeding up when one starts take on more physical work.....

I hope my response and the "bump" to the top of the post board will get you some helpful input.  A couple of people come to mind who should be able to share experience and emotional support.

Only thing I can offer is keep strong and positive of mind and work with your doctor(s).