Looking for a friend

I am getting ready to have an AV node ablation with a pacemaker. I was born with Hypertrophic Cardiomyopathy and recently have been having A Fib issues. I don't have many options my doctors say. I am 27 and looking for someone who has similar issues as me so I can get some answers to my questions. I would feel better hearing from others who understand want I go through. Thanks for listening and looking forward to hear from anyone!

7 Comments

Sorry

by Angelie - 2010-05-23 04:05:41

There are a lot of people here that have had their AV node ablated. I do hope your doctors have told you that ablating your AV node will not cure your a-fib but should resolve your symptoms.
You will be 100% paced for the rest of your life so be ready to accept this pacemaker as a part of your lifestyle from that day forward. Every 6 months to a year you will get your pacer checked, and every 6 years or so you will need to get the pacemaker replaced (when the battery dies).
Living with a pacemaker is not difficult but with all things there can be complications. It takes a while to adjust your pacemaker settings to your lifestyle, but after that adjustment period you should be able to do most anything you would like to do.
As I said already, there are many people that have had their AV node ablated. I failed to say that there a TONS of young people here, myself included, and will be able to help you during your pacemaker adjustment. You will have many questions- feel free to ask them. No matter what got us here we are all part of this wonderful implanted/wired group. Young, old, I think you'll be happy you found this place. It helped me tremendously to be able to talk to people that have walked through similar situations.
The road in getting a pacemaker can be very different for all of us here but what matters is after you've got one we all know what you're going through. We might not have known where you've been, but we know where you're at right now.

Peace and welcome to the Pacemaker Club,
Angelie

Mac

by LS - 2010-05-23 04:05:44

Boy, could I ever relate to that "slipping away" feeling, but reading it clarified it for me. (if that makes sense) Thank you.
Wishing you continued good health,
Liz

AV Node Ablation

by mike thurston - 2010-05-23 04:05:59

Sorry you have to go through this situation. While much older than you (58) I had a-fib issues after suffering a second MI in Oct. 2000, After several years of intermittent a-fib it became permanent. Failed meds, failed mini-maze that nearly killed me and a low EF (15%) left me with no other option. I just went past 3 years with an PM/ICD from Medtronic. My EP tried to leave me with an escape rhythm but unfortunately there is none and I am totally PM dependent. Despite all this I am happy for the ablation as my EF is now around 50% and I am very active. I fight fatigue and depression but don't we all :) I rock climb, lift weights, bike up to 50 miles on the road and mountain bike on single track. I am in a-fib 24/7/365 and always will be but I am blessed to have the level of life quality I have. Hang in there and feel free to ask me any questions.
Mike

Hello!

by pacergirl - 2010-05-23 09:05:11

I am honored to be the first to say welcome to the Pacemaker Club! You will find that there are a large number of members here that have exactly what you have. I know they will chime in as soon as they are up and about. You will find some very helpful people here. There are some that will make you laugh and some that will ask questions. I guess what I am really saying is... Welcome to our wonderful club.

I can only relate with you because I have heart issues too. Bradycardia, tachycardia and heart block and I seem to live in and I quote a friend "A constant state of panic" Not really but I seem to have a busy life. My heart keeps up pretty good with it's new wireless St. Jude pacemaker.

So, welcome to the club! You will find friends here.

PG (Pacergirl)

Hope to help

by MacOfNiagara - 2010-05-23 11:05:15

Hello Cgheart,

While my symptoms and age are not identical to yours I am happy to answer any questions and share my experiences.

I am 40 and quite athletic and in very good shape. I eat well and exercise regularly. I am a dad of two and husband of a loving and supportive wife (married 10 years).

Two weeks ago I woke up at 2am with chest pain. I have had heartburn for over 20 years and it sometimes causes chest like pain. I assumed it was related to that again.

I tried to fall back asleep for an hour and could not, so I went downstairs to watch TV and wait it out. My wife came down and suggested I go to the ER. I drove myself (dumb move, but I thought it was just heartburn related.) They ran some tests and the EKG showed some heart block. While I was waiting in the ER room for more tests I suffered full cardiac arrest for 12 seconds. I had about a three second warning. I felt a massive shot of panic / adrenaline. I knew immediately something was very, very wrong. I called the nurse and then was gone. I dreamed for a bit and then came out of the dream in a fog like state, with no memory of anything. It took a good 3 seconds for me to realize where I was and what happened. The nurse had to thump me on the chest to get me going again.


Once I realized everything that had just happened I went into a bit of shock / panic attack for about 30 minutes. It was not fun, and I was honestly afraid that I was dying and that they would not be able to bring me back if it stopped again.

They told me shortly after that I was going to get a pacemaker. I was actually pleased with this news as I wanted anything that was going to ensure my heart kept beating.

The surgery itself was not bad at all. The had me sedated quite well, and I recall nothing of the operation. The surgeon did mention he had a lot of difficulty getting the leads threaded through my chest muscles and tendons as they are quite solid. Normally a 45 min operation, but it took him 2 hours.

The physical pain has been only a minor issue. The psychological trauma has been much worse, and was unexpected.

I initially had a great deal of trouble sleeping. The sensation you get as you begin to fade away to sleep is very similar to what I felt just prior to the cardiac arrest. So as a result when I get that drifting off to sleep feeling my body panic and gives me a massive shot of anxiety. This repeats itself until I am so jacked up that I cannot sleep.

I have gotten much better with sleeping. I still get some minor sensations when drifting off, but I have learned to accept them as just falling asleep.

The first night home from the hospital I did experience a full blown panic attack (worst I have ever had). It was at night and I was watching TV and getting very tired and had that slipping away feeling. I tried to ignore it, but it kept coming back. Full blown anxiety attack soon ensued and I was off to the ER. Checked out fine and gave me some anti anxiety medication.

My main issues now are learning to trust my body and the pacemaker.

The angiogram revealed my heart to be very healthy and with no damage. My blood vessels and cholesterol are also in perfect shape. It was strictly an electrical issue, that in retrospect I have had for over 20 years.

They believe it was primarily due to stress. In the past two years we have had: middle daughter (14) diagnosed with cancer (ALL), youngest daughter diagnosed two months later in womb with Down Syndrome and the pass two months later at 8 mos of development. Mother suffered a massive stroke a few months ago, and then my cardiac arrest two weeks ago.

I thought I was doing well with stress, but my heart and the doctors say otherwise.

Hope my story helps. Please feel free to ask any questions. I am a bit of an open book, and don't mind sharing at all in the hopes that it brings help to others.

God Bless,
'Mac' Darren MacDougall

Cgheart & 'Mac' Darren

by bunnykin - 2010-05-23 12:05:05

Hi Cgheart, I am still considering doing the AV node ablation the 3rd time and tho I have an ICD/PM I still have a lot of issues with different kinds of arrhythmia. You must however be prepared to be 100% paced if your EP is successful in ablating totally your AV node. But it shouldn't be too much of a problem once your arrhythmia is controlled by the PM; Mine is a different scenario as it was only AV node modification at first but arrhythmia had recurred after that. So another attempt was made when my palpitation continued to come back. Now I may be looking at yet another attempt to wipe out the entire AV node if my medications can't control the tachycardia. That's all I can say to you for now; I wish you all the best if you're doing the Ablation soon?

To: Mac Darren,
I can relate to your symptoms in your post above and felt strangely familiar with the feeling of adrenaline and panic or fear just before your attack. Also, I have been finding very difficult to fall asleep too. That explained the months of insomnia after the shocks from my device. Pls check your inbox as I've sent a private msg. Thanks. bunnykin

cgheart_friend

by Vai - 2010-05-26 12:05:33

Hi CG

You did not say much about why your doc says you have no choice but to have the a/v node ablation but I guess, you are now thinking more about it.

I have hypertrophic cardiomyopathy underlying issues with my heart condition. I have similar AFIB issues as a result of this hcm condition. Couple of comments:

1. With hcm as the underlying heart structural condition, afib is a natural problem and it can get progressively worse. vtach is also another potential eventuality. I heard from more than 1 cardiologist/EP that this is the case.

2. Having a/v node ablation to deal with the afib is 1 choice and usually it is a last choice where the afib is already persistent and disrupting normal life.

I was told I need the a/v ablation about 1 year ago and received several members' (of this site) assurance that this is a safe procedure and that if it is necessary there is nothing to be afraid of. I was greatly assured and comforted by the advice and I truly appreciated it.

However I sought a second & third opinion and was advised that I had not reached "that" stage where it is an absolute must. I elected not to go through the ablation.

3. Instead I stayed on a regime of medication to manage the afib. As it turned out, the medication using Sotalol quietened the afib and I no longer need to ablate. This could turn out to be just a temporary reprieve, just so the doctors alerted.

4. My PM is reset to 55 bpm (low limit). I am 93% dependent on the atria, less than 1% ventrical, and have hardly felt any afib related discomfort for last 12 months, although the PM interrogation report recorded 6 occasions where the afib lasted 6 hours, plus many other minor instances of afibs which lasted only a couple of seconds.

5. You may want to think about medication as an alternative to manage the afib. Of course such beta blockers do have side effects that you cannot tolerate or may not like to experience. For me I don't experience much of the side effects except occasional tiredness. It depends on whether your doctors think that medication is no longer an alternative for you.

I hope this is helpful.
Regards
Vai

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