Broken Spirit

I'm new to this site; was recommended to join by the cardiac rehab team. They thought it may help with my anxiety. Quite frankly reading through some of the postings increased my anxiety a bit. :0
I was born with Tetrology of Fallot and had it repaired in 1974 at the Hospital for Sick Children in Toronto. Had a pretty good life from them on with no issues. Never ever considered my congenital defect as an excuse to prevent me from living my life. But things changed in 2007 when it was discovered I had ventricular tachycardia. I also needed my pulmonary valve replaced. I was not scared or even worried about it. I was confident that this was going to go well. So I in the interim, I lived on amiodorone for a year while I waited for the team of doctors to discuss my case and eventually had surgery in 2008 at Toronto General Hospital. All went very well except the ablation did not work and I had an ICD implanted. Although I have always been a little frightened of the device, it gave me no problems and I had put it out of my head until 4 months ago. I was on a treadmill running (at a good pace) and as I was cooling down my heart rate increased therefore setting the ICD off 4 times! I ended up falling from the treadmill and breaking my arm. I am now coping with panic attacks although they have now reduced to anxiety. Although I know that this device is here to save my life, now that I have experienced it firing, I'm having difficulty coping and resuming my life as I previously did without a thought to my heart issue. I see a psychologist (specific to heart patients) who helps me tremendously but does one ever recover from the mental and emotional set back of an ICD firing? Now I feel palpitations all the time which I never did before. And even when I did once and awhile, I never gave them a second thought. I feel every little twitch or twinge in my body and question everything. I feel as if I'm on High Alert and can't calm and ignore these random "jumps" of the heart. I am now on a beta blocker and anti-anxiety medication. Has anyone ever had their ICD removed or deactivated?

5 Comments

Thanks :) cabg patch

by Carmela15 - 2012-01-27 09:01:41

I'm usually an upbeat person but this thing has just knock me down...I do try to look for the positive everyday but sometimes it is two steps forward and one step back. Thank you for taking the time to comment. I appreciate it :)

Mirror

by KatrinaM - 2012-01-27 10:01:21

Hi there Camela,
What you have described has mirrored my experiences, thoughts and emotions exactly. I have had my ICD for 3 and a half years now after being a healthy active 40 year old. Huge change to my life and like you I feel every beat, click and jump that my body seem to have. I have had my ICD go off several times including a run of 4 just before Xmas when I was hospitalised to see if problem could be identified. I now have a new medication plan in place and feel much more confident that this is working. Have been clear for a month now and am looking forward to getting my wheels back soon. The best news I got was just the other day when I was once again in the Emergency department and had my device interrorgated after an "episode". The tech was fabulous and took the time to explain and show me on the print out that the exercise I had been doing was indeed helping me both mentally and physically, I could actually SEE the difference. My cardio actually explained to me that because I have had a bad experience my body will occassionally let me down and let go an adrenaline rush - it's not heart related!!! This has given me so much more confidence and positivity it was worth the trip just for that. You sound like you are doing all the right things but may I suggest that every day you set yourself a small goal to achieve and DO IT. You will get a feeling of self worth and a knowledge that you CAN do it. It will be slowly, slowly and your life will not be the same as it was pre ICD but that's okay and once you can accept it and move on you will become a happier person. I too am a positive person and this massive change to my previous life has been monumental to get my head around but I have learnt patience and not expecting too much of myself has been the best way to deal. I also go to a Cardio Rehab program where I have been learning how to begin exercising again safely and with confidence. Stick with the website - even though sometimes it does make things more real at least the people here "get it" and care. Hope this helps you.
KatrinaM

Carmela - onsider the following:

by donr - 2012-01-27 11:01:07

An anxiety disorder called PTSD - Post Traumatic Stress Disorder.

Been there, done that for nearly 40 yrs, now. Mine is courtesy of a yr in Viet Nam.

I recommend that you Google on PTSD & read about it. You will get nearly 1000 hits. It is a recognized disorder in the DSM-V, the dictionary of psychiatric/psychological disorders. People think of it in terms of affecting soldiers in time of war - NOPE!!!!!!!!! It can affect Cops, Firefighters, rape victims, aircrash survivors, auto accident survivors, survivors of violent street crime - like armed robbery, muggings, etc. ICD hosts who get zapped unexpectedly several times in a short period.

Your description of what happened to you fits all the criteria for the cause of PTSD & the symptoms of same.

Can you get better? YES! Can you return to the same mental state you were in prior to onset of symptoms? Probably NOT! You used the term "High alert." Guess what - that's a common symptom of PTSD for soldiers - let me call it "They are coming through the wire." Given time & good treatment, you will reduce your anxiety, but there will always be an element of "High alert" in your sub-conscious mind. I've had it for nearly 40 yrs now. You did not say - is it affecting your sleep - especially your ability to fall asleep easily?

If you want, I will gladly send you a little moograph I wrote called "Don's Primer on Anxiety." It will give you my take on where it comes from in layman's terms. Your shrink would gasp at it, however - no psychobabble.

Best to you.

Don

Jolts

by ElectricFrank - 2012-01-28 12:01:14

The most important thing is to be sure the ICD is properly and not firing necessarily. They should have been able to determine from the ICD interrogation what caused it to fire. For instance did it misinterpret your HR on the treadmill as a cardiac problem when it was the normal response to exercise. I have a pacemaker without ICD and have had the cardiologist mention that I had a burst of Vtach when I had just been hiking in the desert. If it had been an ICD I would have been "tasered". Another suggestion is to find out what level of exercise you can sustain without firing it.

I'm an electronics type and have received plenty of real jolts in my life. I can understand the tension you must experience wondering when the next one will come.

If you are willing to trade risk for a better quality of life you could have the ICD function shut off. This would still leave the pacemaker function providing assistance without shocks. It's one of those decisions we sometimes need to make in an informed way.

best wishes,

frank

Superman falling

by stillshocked - 2012-02-05 12:02:32

What my doctor called it is the "Superman falling" complex. No person is perfect but so long as something is not obviously wrong we are all supermen. When we come to realize that have broken and we are not superman. I realize you started from youth, but the question is, is it better to live with the inconveniences or take the chance of not living at all.

My friends ask me how do I cope knowing I have a problem, my question to them is when was the last time you had a full check up? How do you know you don't have a problem? Are you a gambler? I at least know what is going on, and have some of the best train physicians helping me with it and monitoring it. HOW LUCKY IS THAT! I feel blessed. I lived for years with the problem, I almost died, but I was given the gift of a second chance. The question you have to ask yourself is what is worse? Only you can answer this.

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Member Quotes

The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.