Living Life Irregular

[John Morales]

after 6 EP ablations,Im resigned to the fact that what I have now Im gonna have, there is pretty much nothing left to burn in my Atrium and it will pretty much take a guarantte from god to let anyone else in there.

Now that Ive said that here are my questions As it appears I may never see Normal sinus again. What is the downside to having irregular rhythms constantly I mean I get up in the morning and my HR is sometimes 80,120,50 in the afternoon it may sit in the 120s down to 80 up to 120, 65 include skip beats and a lot of PAC/PVC this is all day everyday, the Dr. tells me it's not gonna kill me and 'll have to get used to it...Which is not easy as the Rate changes I sometimes get light headed and get this foggy fleeing in my head.

Can someone live with these type of erratic HR Rhythm does anyone here suffer with anything like this or is it something Im gonan have to work to correct.

I am in the process of seeking a second opinion but with my History,Im sure it's too late, I guess I want someone to tell me that my present Dr. is doing the right things and that I can live with this condition,....I am trated at the University Of Pennsylvania which IM told is one of the better facilities in the country but who knows.

I am taling 25mg Lopressor 3x and will start back on AMI 200x1 as soon as my prescription arrives.He says it will suite me better than Tikosyn.

Thanks in advance to all who takle the time to read, it's difficult to get the whole story in,please read 6 Ablation Later for more info..

I look forward to all opinions and suggestions..

John

[CCF-M.D.-RCJ]

John,

I reviewed your previous post.

Many people live with an irregular rhythm.  In fact I saw 2 people today who were in afib with no symptoms.  I recommended that they not undergo ablation, but rather continue on beta-blocker therapy.  Symptom control and stroke prevention are the 2 basic reasons to treat afib.  If your symptoms are not terrible, then continuing on with your current therapy is just fine.  If symptoms are very troubling, then an alternate plan might make sense.

If you live in Pennsylvania, you might consider a second opinion here at CCF (Drs Daliba, Schweikert, or Natale) or at John Hopkins Hosptial (Dr Caulkins).

Hope that helps.

[Linda123]

Phew John, what a horror story!  What was your original problem?  Have the ablations made your condition worse?  I am thinking of having an ablation myself for trouble in the atrium, your story sure makes me think twice.
Best wishes to you, hope you can get help.

[wingtip]

I've been in cronic a-fib for five years, and I've found that with exercise, the problems seem to go away.  My father (63) has been in cronic a-fib for ten years and has never missed a day of work at the plant because of that problem.  

My doctors told me upfront that the cure is still worse than the disease.  The two cardio-versions were much worse than any symptoms I've had so far.

Good luck

[cyn123]

John   WOW  what a story.  I dont have any answers for you but i will pray for you and hope that you find some way to lead a normal life.  I too suffer from pvc and pac  not everyday but the way i worry about them coming they might as well be.   Good luck to you and i hope you find answers.

[John Morales]

I'd lke to thank everyone for their comments,and well wishes in retrospect all I wanted was for my heart to be normal and it's possible that this was not possible...

Every time I went in for another EP Study/ablation I was hopefull that based on the past the Dr. would now know what to do they all said, We should get it this time, I was just in there for 10 hours, well all that happened was it got worse evey time,

I am very concerned that the amout of burns I have had which I gess is at least 200 las t ane 6 weeks ago he said they did 60 burns will have bad long term affects on my heart and internal pacemanker ( someone tell me no Please).

As for now one of my main goals is not to check my heart rate as much as I do, I know it is not right its obvious by the way I feel,burt I need not get more stresssed thatn I am.

I should of stopped my journey after 4 and said live with it but the last 2 I guess too me over the edge, I know the Dr. went in with the best of intentions I just think my case was jsut not in the cards to be fixed. He seamed liek he know what he was doing I checked himout awards and all.

So thanks you to all as ong as Iknow Im not alone I wont feel bad, does anyone know if I set some records with the 6 ablations or was I used for the advancement of medicine//

John

[Dr. Erik]

Get the second opinion at the Cleveland clinic. It is the best heart center in the world. It's worth one last shot. Right? Good luck!!!

[VALERIA]

John, definantely you are not alone.
I'm now 42, and my heart problems started in october, 1993.
Then I was 32, and can still remember that day, what I was doing, weather and all when my heart started to race like crazy.
Later that day it calmed down, but that day was the beginning of all of this, and it would start up everyday since that first day.
Since september of 1999, I have been on Toprol, started out with a half of tablet, felt relief right away, but had to increase dosage over time, now I take three tablets daily, still have all symptons, but not as much or severe as before.
If I am late for a dose, my heart definantely reminds me.
Still see my cardiologist about every six months, but like yourself, It is something I have to live with, and I am told it won't kill me, and he says I'm healthy, but the way I feel at times, all these arrythmias, don't feel healthy.
I posted in this forum under continued arrythmia, explains more.

[MacyMaid]

Please John, if all possible, see one of the specialists at Cleveland Clinic.

My niece had a mess up of her ablation at another place and ended up at Cleveland Clinic.   She is managing well now.

We have the Texas Heart Institute here but I would jump at the chance to go to Cleveland Clinic for my problem if at all possible.

Good Luck to you.

[Richard_W]

After reading this experience it will be a long, long time before I ever agree to an ablation.  I've been on Betapace for over three years and my life is completely normal except for twice daily pills.  I can certainly live with that.

[John Morales]

Valeria thanks for the reply, Im sorry to hear you also have the gezzz not again. Anyway after reading your story we are very similar n a few ways though IM a little older 48, my 1st episode also started in 93 while working out at a gym on a bike and went down hill from there. I had a few years were I have little to no episodes.

I should of accepted then what was happening and not pursue the ablations as a cure all, in my case it was not.

AS I said in a previous post my biggest concerns are the long term ramifications of having had so many ablations and burns in my atrium I would venture to say almost 200 I was hoping one of the Dr. here would shed some light on this.

If Youlike to communicate and talk further please feel free E-mail me at ***@****

Thanks a  bunch

John

[John Morales]

Once gain, WoW and thanks to all who have taken the time not only to read but write. I appreciate everyone saying I should go the the Cleveland Heart Center , believe me I would,

I have one major problem I have NO HEALTH insurance being a Veteran I have used the veterans medical services for almost 20 years and while they don't have a great reputation I have always felt I got good care there.

As Far as my Arrhythmia problems they always sent to an affiliated Hospital being NYU Medical Center the last 2 years The University OF Pennsylvania both accredited and good Hospitals Im told.

IF The Cleveland Institute is somehow affiliated with any Veterans Administration, I would without a doubt go there.So if thats the case someone please let me know.

IF any of the Dr. at the Cleveland facility would like to review my records I have them and can either send them or take them.

Thanking all in advance for y our kind words and encouragement.

John

[Kopey]

WOW, SOUNDS LIKE YOU HAVE BEEN THRU THE RINGER! Currently, my Mom is in AGH in Pgh. She has been in and out of a-fib since 1993. When shi is in it, she is symptomatic, even though her rate is controlled. Actuallty, now she goes between a-fib/flutter. We have come to the end of the road for treatment options. She has been on so many different medications...the last one was Amiodarone, which she failed on, and now is on Flecainide. She was electically cardioverted for the I think 10th time yesterday, was in NSR for approx. 24 hrs. During her stress test today she went back into a-fib/flutter. Our next tx options are an a-flutter ablation. I am attempting to get her insurance to approve an a-fib abletion at UPMC Pgh, do to the fact she could not make a long drive for tx options elsewhere. The next step is an av node ablation with pacemaker insertion due to the fact she will be rate controlled,(slow). I appreciate comments and advice. Her two other options are Cleveland Clinic,(she probably could tolerate that drive, and Johns Hopkins, she couldn't make that drive. Any suggestions?