VF Experience - Give and Take

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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johncm
Posts: 3
Joined: May 31st, 2018, 5:30 pm

VF Experience - Give and Take

Post by johncm » June 10th, 2018, 3:46 pm

<t>Hello ICD community,<br/>
<br/>
It's been awhile since I posted. Nothing like a shock to motivate a person.You can see my journey by looking at my signature at the bottom. I'm 62 years old. I have some experiences I want to share followed by some questions. Hence, the "Give and Take" in the title.<br/>
<br/>
Two years ago I went in for a test to see if I had an electrical problem with my heart. I went into almost an instant VF rhythm and had to be shocked twice by my EP to get me out of it. Afterwards, he implanted my defibrillator/pacemaker and I became part of the ICD community. When I got out of the hospital I began obsessing about those painful shocks and couldn't sleep.I went to a therapist and she said I had PTSD. Two things came out of that experience. I will always have the doctor "knock me out" before every major procedure or test. Secondly, Saturation Therapy really worked for me and I hope for others out there.<br/>
<br/>
Now for the ask... I am now fully ramped up on meds at 750 mg of Mexiletine. It makes me feel like I'm in my 80's. My next step is probably ablations. How do you find a world renown EP to do the procedure? I really got nowhere after a web search. I live in San Antonio,TX and fortunately have the current means to travel to find the talent and get the best 2nd opinion. Recommendations are welcomed!<br/>
<br/>
Lastly, how do they avoid creating more scar tissue when they take out scar tissue during an ablation?<br/>
<br/>
Many thanks for this sharing community - JOHNCM</t>
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Increased Mexiletine to stabilze
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018
Mexiletine increased to 750 mg

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Colin Pearson
Posts: 890
Joined: August 12th, 2013, 6:25 am
Location: Berkshire England

Re: VF Experience - Give and Take

Post by Colin Pearson » June 14th, 2018, 4:40 pm

Sorry John, I cannot help with the EP.

But have been along a similar path with zaps and then drug changes. I'm currently on Amiodarone. I had one attempted ablation but they couldn't induce my heart into playing its game.

mkk
Posts: 6
Joined: June 11th, 2018, 6:31 pm

Re: VF Experience - Give and Take

Post by mkk » June 14th, 2018, 6:00 pm

Hi johncm. I'm also hopeful that, in the near future, ablation will be accepted therapy to cure my Brugada syndrome. Currently, ablation for Brugada is largely an experimental treatment (with very promising results according to medical literature) reserved for those who suffer frequent episodes or ICDs are contraindicated.

If you don't mind, I'm wondering what condition you have that ablation would fix. I just want to learn more about ablations curing electrical problems.

johncm
Posts: 3
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » June 14th, 2018, 8:52 pm

Thanks for the response, folks.

MKK - I was diagnosed with ventricular fibrillation 2 years ago. We've been managing the out of control rhythms with meds. Namely, Mexiletine, that I understand is Lidocaine in a pill form. I'm on a pretty high dosage and understand ablations maybe the next step. I have a lot of scar tissue and the procedure tries to freeze or burn this tissue so electrical impulses flow freely and don't get stuck in a loop. Pls note this info is pieced together from conversations with my EP and may not be textbook material.

Stay well - johncm
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Increased Mexiletine to stabilze
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018
Mexiletine increased to 750 mg

User avatar
ricatlga
Posts: 376
Joined: February 2nd, 2010, 8:57 am
Location: Atlanta, GA USA

Re: VF Experience - Give and Take

Post by ricatlga » June 15th, 2018, 9:52 am

Hey John - I think you'll find that others here have ended up with a tour of the various heart meds to deal with the VT/VF. When I first had my EMT intervention (naturally on the road for a business trip) they started amiodorone. They played around with dosages on that. But after 1 year when my EP retired and I got a new (YOUNG) EP, he was shocked that at my age I was being treated with that and not a different drug. So he switched me to Sotalol. Big difference in the way I felt.

Now, I did not shop around for best doc for ablation. I had shocks about every 6 months for a couple of years. But then one time camping with Boy Scouts I had two shocks within an hour of each other. At that point, my EP had me shipped direct from the ER and said that we needed to try an ablation. Because he was part of Emory University, which has a big heart program, and I really liked the guy, I didn't consider options. Then again, this was sort of you're in the hospital now, let's get this done.

My understanding is that no scar tissue is removed during an ablation. If you are not at a major hospital with a big specialty in heart problems, I'd suggest looking for those.
Raymund
Mitral valve repair Dec 2007
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Ablation May 2012 - Sotalol discontinued in September

mkk
Posts: 6
Joined: June 11th, 2018, 6:31 pm

Re: VF Experience - Give and Take

Post by mkk » June 15th, 2018, 1:10 pm

Thanks johncm. Do they know what caused the scarring?

Might be a little off topic but one of the emerging theories for Brugada is build up of collagen or scar tissue in the heart interfering with electrical signals as you say. This might be worth noting in my case as I tend to scar pretty badly (as does mother, and her father died young from possibly heart related issues: stroke preceded by fainting spells).

Judging by the medical literature, ablation is likely to be implicated for treatment of Brugada. Being 32 I'm hoping ablation therapy becomes widely be accepted and it'll "cure" me instead of just ICD with which I can still pass out and get injured, pass out in front of clients/in a courtroom, etc.; to prevent arrythmia instead of reversing them after the fact.

But we'll see. I expect (and hope) it'll be close to a decade until I have another syncope, and I just had the ICD implanted on Tuesday. Perhaps the risks of ablation will be too much for someone with rare episodes as myself.

johncm
Posts: 3
Joined: May 31st, 2018, 5:30 pm

Re: VF Experience - Give and Take

Post by johncm » June 16th, 2018, 3:39 pm

Hello Raymond.

Thank you so much for your response. I believe many of us feel like we're an island in a vast ocean of questions. We're trying to figure out how we got here, are we getting the best treatment and is there a better solution for our ailments? Discussing with doctors tends to be one sided and expensive. Sharing your experience has given me renewed hope and I'm impressed...you really seem to be living life.

Also, what is it about the Boy Scouts! I had my first episode at a camp out with the Scouts. Cheers!

MKK,

My doctors don't know how I got my scar tissue. They suspect I had a virus at some time that attacked my heart.

I just met with a heart researcher friend of mine. His wife is a nurse administrator. They are going to check with their contacts for an ablation specialist. I'll ask them about Brugada and ablation treatment.

Happy Father's Day, gentlemen!
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
VT at noon in Hosp. Moved to ICU
Sent home, but zapped 3 AM 11-4-2016
Increased Mexiletine to stabilze
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018
Mexiletine increased to 750 mg

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