All about me

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Ericp133
Posts: 6
Joined: December 22nd, 2012, 6:38 pm

All about me

Post by Ericp133 » December 29th, 2012, 11:46 am

Ericp133. PROFILE

I am 77, retired mining engineer. Great health till something went wrong with a colon resection (2008) and I ended up with A-fib which hasn't returned. May, this year had first v-tac. St Jude ICD pacemaker/defibrillator installed. Device went off in June (12 kicks) and supplemented amioderione With metaprolol. Began to feel some little "dizzies" or "Wobblies" in Sept-Oct not considered important and continuing. Hard to define these things.

Another incident on the solstice (20 kicks) and kicked the meds way up. Didn't work; had another last Thursday (14) kicks. Getting tiresome.

Shipped up to SequoiaHospital in Redwood Ciy, CA, ( I live in Paso Robles, CA) and had ablation yesterday. Piece of cake! Mixed results; they think they got it but can't prove it. Back to wait and see.

Would like to hear from some of you. I have questions. Eric

garya
Posts: 577
Joined: September 10th, 2010, 9:04 pm

Re: All about me

Post by garya » December 29th, 2012, 12:09 pm

Hello and welcome. Just to be clear, when you say "kick" do you mean your device fired and provided you therapy (a shock)? In the 12 kick episode, how far apart were these kicks? Minutes, hours, days? Regardless, that is a lot of kicks to be explained. Were all "appropriate?" Did you received "ATP therapy" prior to any of these kicks? Have they been resetting, tweaking your device between these episodes?

Who did your ablation? Atrial or Ventricular? The usual recommendation I've seen on this board is to try and use only the best, most foremost EP and one that has done many, many, many of them. Did they stop your amiodarone? Sounds like you have gotten off on a lousy start to having an ICD.

Oh, and how did you ever learn of this place, this forum?

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Suzanne
Posts: 3587
Joined: October 1st, 2009, 8:42 pm
Location: Toronto, Ontario, Canada

Re: All about me

Post by Suzanne » December 29th, 2012, 12:23 pm

Hi Eric and welcome :)
Wow...that's a lot to go though, all those "kicks" (I'm assuming you're referring to shocks).
I pray your ablation was a success!!
If you don't mind that I ask, how are you coping psychologically because of all the shocks?
I'm happy for you that you joined this support group. I do think it will help, just sharing and learning with people who understand.
Please go ahead and ask your questions..hopefully someone will be able to help.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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Eric
Posts: 1412
Joined: May 1st, 2011, 7:39 pm
Location: Utah

Re: All about me

Post by Eric » December 29th, 2012, 1:54 pm

Eric,

Welcome from another Eric. I too have had a lot of "kicks" (shocks if that is what you mean). I too agree with Suzanne, how are you coping emotionally and mentally? I know after I have recieved so many shocks that I became a living wreck. I hope you have a good doctors that recognize that thier is a psychological side to recieving so many shocks and that they have addressed this with you. I do know that you have done a very brilliant thing in joining this support group as the people here have helped me cope with the Post Traumatic Stress.
Also, garya asks some very good questions. Have your team of doctors worked with your device to fine tune it for your condition? Do you know if they have ATP (Anti-Tachycardia pacing) enabled? These are questions you may want to ask and also try to understand exactly what your device is set to do.
I am hoping and praying that you do not have to recieve any more shocks and that the medicines will work for you. So glad you have joined the group as being the only Eric around for a little while, it is nice to meet someone with the same name.
Please feel free to ask a lot of questions as there are many people in this support group whom may be able to help you.

Wishing you the best,

Eric
Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
Lead revision 8/16/2011
VT episodes starting in August 2012
ICD Changeout 2/25/2013 St. Jude Inspire Assura
Too many meds to count
Life is too short, live in the moment and make the best of it :)
Intro is here:http://www.icdsupportgroup.org/board/vi ... 271#p75271

Ericp133
Posts: 6
Joined: December 22nd, 2012, 6:38 pm

Re: All about me

Post by Ericp133 » December 30th, 2012, 12:36 am

I am not sure how to get around on this forum but I will try to answer some questions.

For Garda, the kicks are getting the shock therapy. For me they go off at about 45 second intervals. I do not lose consciousnes. All were appropriate. I suspect I was getting ATP but did not know what it was. Still learning. Ablation yesterday at Sequoya hospital, Redwood City, CA. Recovering nicely and time will tell how successful it is. Now off amioderione but not sure about the substitute. Still on metaprolol. Learned about forum thru Google.

For Susanne, I will be getting some psychological help with the PTSD. I am terrified the ICD will go off again. It went off in a nap dream this afternoon so I guess I better attend to it soon.

For the other Eric, they are tweaking my device and meds. I believe I am in good hands. My last incident was, without question, stress related. During my ablation, they woke me up so I got to feel the ATP shocks directly. I have been receiving them for some time but did not know what they were. Still learning. Really appreciate your comments and support. More later. Eric

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mrag
Posts: 4382
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: All about me

Post by mrag » December 30th, 2012, 1:13 am

Simplified. ATP is 'anti tachycardia pacing.' When your heart starts going faster (tachycardia), your device will make the heart go faster for a short while to try and bring the heart back into a better controlled rhythm. IF that does not work, you get a kick, zap, jolt or as others might say 'therapy.' For reasons still unknown to me, my ex EP never activated ATP on my device. It is my reason he is my ex EP. ATP does not always work, but usually it is painless and avoids getting a shock. ATP does not shock, it speed paces.

Recently (several months?) they have discovered that a higher heart rate setting can also help avoid getting a shock. My device is currently set to give me a shock when my heart rate gets to 185 beats per minute. New studies show that if they set me at say 200 beats per minute before a shock, I will be just as safe and likely miss out on getting shocked.

Amiodarone is a horrible drug for some people and not good for others. BUT it is the "best" drug you can take for difficult arrhythmias or where one is getting shocked. My own opinion is it is the drug of LAST RESORT.

I have been shock free for two years now following a ventricular ablation which is quite different than an atrial ablation. Ventricular ablations are much more successful when done by truly experienced and highly practiced pros. I was told immediately following the ablation that I could stop the amiodarone. I continue to take metoprolol (the succinate or XL version is once a day and supposedly releases more uniformly than taking toprol (same thing) twice a day).

I had about 10 shocks at various times although not the real bad "storms" (multiple shocks within 24 hours) like Eric and Suzanne suffered through. I still have times where I worry and get anxious about yet another shock. This worry and anxiety is likely the norm although the other norm to consider is MOST people never get a shock.

Welcome to the club.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

srmartinson
Posts: 77
Joined: December 18th, 2010, 7:22 pm

Re: All about me

Post by srmartinson » December 31st, 2012, 10:45 pm

WOW Eric, You are in my neck of town! I also see the wonderful cardiology team from Sequoia Hospital in Redwood City. They are the BEST in this area by far!!! Glad to see you went there for the ablation. Hope you have great results.

Stephanie
Dx 1995, HCM, non obstructed, verapamil 120mg
2004, first ICD, battery recall, migration of ICD x2
2007, 26 inappropriate shocks, lead failure, lead extraction (total 8 surgeries in 4 yearts)
2008 Living without ICD
2011 First chest pains,
10/2014 Ready to try again!

Ericp133
Posts: 6
Joined: December 22nd, 2012, 6:38 pm

Re: All about me

Post by Ericp133 » January 1st, 2013, 6:50 pm

Hi Stephanie:

I agree, Sequoia is great. I am back home in Paso Robles, off Amioderone which doesn't work for me and now on Sotalol. They woke me up during the ablation to see if I could trigger the lethal stuff emtionally. Didn't work so they "used brute force rather than finesse" and zapped the entire area that was generating signals. So I got to directly experience some of the procedure. Fascinating!

I do feel different now in a positive way. Just have to get over some PTSD about getting so many shocks and have some good help for that.

Thanks for your response.

Eric

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Eric
Posts: 1412
Joined: May 1st, 2011, 7:39 pm
Location: Utah

Re: All about me

Post by Eric » January 1st, 2013, 7:47 pm

Eric,

I am so glad you have some good help for your PTSD. I know from my experience, just finding this board was incredible, then getting feedback and getting to know the other stories and that I was not alone in what I had been through, that others had been through similar experiences, helped me tremendously. I have also found that by typing my feelings and my experience on this forum, that it helps me externalize my feelings and start to understand what I have been through and eventually come to terms with it.
Glad you have found us. :)

Eric (did I just type a message to myself lmao4dx )
Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
Lead revision 8/16/2011
VT episodes starting in August 2012
ICD Changeout 2/25/2013 St. Jude Inspire Assura
Too many meds to count
Life is too short, live in the moment and make the best of it :)
Intro is here:http://www.icdsupportgroup.org/board/vi ... 271#p75271

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