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Long-Term Survival with Structurally normal Heart
- by Woodinger1985
- 2012-07-01 06:07:41
- ICDs
- 2558 views
- 8 comments
Hi first of all,
My name’s Chris, living in Germany, and got diagnosed with Brugada last year, had a single Chamber ICD implanted 05/11.
Never had any symptoms, and haven’t had any shocks or other problems related to the device so far.
I do have a few questions though, and maybe someone more experienced can answer one or two.
Is there anyone here who’s had an ICD or maybe a pacemaker, which was fitted at a young age (I’m 26), with a ventricular lead for a looong time 20+ years with purely electric heart problems?
I’ve read a lot about possible complications, but something my Doc said to me left me a bit uneasy, especially because there were many different opinions about whether or not I needed the device.
My Cardiologist told me that there’s a lot of uncertainty about long term effects especially pacing (pacing is turned off in my device) and the effect of the lead on the tricuspidal valve, meaning that in the long run the leads would cause right heart failure.
Big concern is that the longer the lead remains in me the more difficult it’ll become to remove, and looking at especially those long term complications I’m not too happy about having that thing inside of me. My Dad turns 60 next year and has the same condition, but has never experienced any problems and opted not to have an ICD implanted.
Have any of you experienced any problems with tricuspid regurgitation or any other long term effects?
Hope you understand what I’m getting at, not my mother tongue so sorry for any mistakes ;)
Thanks a lot,
Chris
8 Comments
Things are a changing
by ElectricFrank - 2012-07-02 01:07:04
At your age you will likely see some major changes in pacemaker technology in your life. The electronic side will provide many more options for therapy, and most importantly battery life will be extended. There is technology now that could harvest energy from the beating heart to keep a battery charged. The problem is that rechargeable batteries need a gas vent in case of overcharge, and the body wouldn't like gases being released under the skin.
In the cardiac field I'm sure more is going to be known about the long term effects of pacing, and techniques devised to minimize them.
At my age (82) the issues are different. I can almost hear my pacer laughing at me. "Whats the matter with that old codger? Why does he just give it up and die?"
LOL
frank
The future of Pacing
by donr - 2012-07-02 10:07:31
Chris: Your American English is a lot better than my German - Congratulations! Till I got to your last sentence, I thought you were an American living in Germany!
On to your subject:
First off - you are not "Young." Young is 4 months old & needing a PM. That is not unusual. There are bunches of people who fall into that category & lead long lives. As Tracey said - Pacing is still brand new as procedures go & no one has any idea what the long term effects of pacing are. I'll never find out - I'm 76 & only been paced for 9 years. I think the pacing problem your cardio referred to was a long term effect of pacing on the ventricles, especially when only ONE of them was paced. Unfortunately, there's no real way to speed up time related effects to predict the future.
Consider that a normal heart, beating always at 60 BPM beats approximately 3.5 MILLION times in a 30 day month! Throw in all the times that it beats faster & it's probably up to 40 MILLION! That's 480 MILLION beats in a year. Let's see now, long term - let's call that 10 years - you have to somehow accelerate a heart to do 4.8 BILLION beats in a shorter period of time. Where are you going to find a normal (or even an abnormal one) that wants to live at a HR of 600 BPM to do an accelerated age test on pacing? I doubt if a heart could even sustain such punishment w/o failing.
My point is that all of us w/ PM's are living in truly uncharted territory. Uncharted territory which has a population of 100% citizens w/ FAILED hearts. Face it - electrical failure is heart failure. The world has yet to truly accept that fact. You say to someone that you have heart problems & they will assume you mean plumbing type problems or valvular problems. People die every year from Sudden Cardiac Arrest (SCA), which is a purely electrical problem. These are people who have zero mechanical /plumbing problems w/ their hearts.
I just went to WikiPedia & read about Brugada. You are REALLY a lucky duck to have an ICD/PM. Please don't even THINK about the long term pacing effects as long as your device does not pace you. That is like worrying about cancer when you are bleeding to death.
Your Dad is a true gambler, betting that his condition will never jump up & bite him - especially when there is a a device that will prevent it from happening.
I am assuming that YOU made the choice of having the ICD placed - GOOD DECISION! You have guaranteed that your Dad has a chance of having grandchildren & that your family genetic condition, bad as it is, may be passed on. Morbid as it may be - be thankful that your genetic predisposition is not for Prostate Cancer. At least Brugada can be counteracted by a simple device that you carry around inside you. Further, that it is easily & painlessly diagnosed.
In the business of having maladies that are clearly diagnosed, but the end point cannot be predicted - like yours, you quite often do not get a second chance to make the decision to counter it. For instance, I mentioned prostate cancer above. I have/had prostate cancer. I elected to have it treated by radiation therapy some 9 years ago - roughly a year after getting my PM. MY treatment has apparently been successful, since I'm still cancer free according to yearly blood tests. I have a friend who has also been diagnosed w/ the disease - HOWEVER - he has elected to do what is called "Watchful waiting," where he does NOTHING but monitor the progress - or lack of progress of his condition. He is betting that he will die from something else before his cancer becomes serious & makes him terminally ill. Supposing that happens next year - he CANNOT go back & re-make his decision - his die is cast, he will suffer a long, drawn out, agonizing death.
You face the exact same situation, except from a different condition. At least my friend has a chance, though highly diminished, if his cancer becomes more serious. He can still have treatment, but its probability of success is significantly smaller. In your case, you would get NO WARNING & no second chance.
I read a certain amount of what we call "Buyer's Remorse" in you post - you made the decision & now are perhaps beginning to regret it. Not at all unusual - especially when one cannot see the benefits of the decision. Would you feel better about your decision if the ICD had saved your life at least once? Would it take twice? Three times, or maybe ten? You cannot live in the past - you cast your die, your future has been reset from what it once was. If you reflect carefully & examine all the aspects of your decision, you should find that you made the correct one.
I am not quite as old as Electric Frank, who created the comment directly above mine - but from the perspective of being 76 & having made a decision similar to yours at 66 for my prostate cancer, I'd say you absolutely did the right thing. And - looking at the future of pacing technology, before you ever became old enough to suffer the low probability events that crowd your thinking, the situation will have changed - for the better.
Don
Be glad
by Katielou - 2012-07-05 04:07:45
Hi Don,
I have Long qt syndrome which is purely an electrical problem. Nevertheless I experienced two cardiac arrests before it was diagnosed and luckily for me I came round after each one. I had my ICD/pacemaker fitted and had two more arrests, but a quick jolt and all was ok.
All I can say is that I consider myself to be unbelievable fortunate to still be alive and able to enjoy everything that life has to offer. At first I was devastated that I had this lump of metal in my chest but after about a year it became a part of me and I am grateful every day that I have it. As far as the pacemaker being turned off, I wouldn't choose that as it is a good regulator and will try to get things back in order before the kick in the chest comes.
Think long and hard before you give up on your ICD, don't worry yourself about leads and such because if there is any risk that you might one day need it I'm sure you'll be glad you have it. I know I am and I don't think about 'what might happen' in the future all I know is that it is a great security blanket to have.
Maybe you'll come to believe that you too are very lucky to have this guarantee of a long and normal life.
Good luck to you and just get out there and enjoy your life.
Lesley
Good to know I'm not the only one!
by Clare1980 - 2012-07-08 05:07:53
Hi everyone, this is my first time on this site and I'm just amazed I didn't find it sooner! I'm now 31 and have had my pacemaker since I was 17. I have congenital heart block which was detected at birth. Although I always knew I'd need a pacemaker the Drs didn't think I'd need one until I was 30...well after a routine 24 hour monitor it transpired that my heart was going down to 17 beats per minute at night. Yep, you guessed it not long afterwards I had myself a lovely new pacemaker. It's funny how I've just taken it all in my stride, travelling the world and just living life to the full. However, I have just found out that I need a replacement pacemaker and wires implanted because the original wires are failing, I had the battery replaced 3 years ago which was fine. However, now I have a one year old daughter everything seems a lot scarier with so much more to lose. I'm sure that's a typical reaction but I really am so glad to read all the messages of support and to know that I'm definitely not the only "young" person in the world with a pacemaker.
My advice to you, Chris (and anyone else who's reading this post) is to live your life to the absolute fullest! Who knows what's around the corner - at least we've been given a second chance so grab it with both hands!
Cheers
Clare
Back again
by Woodinger1985 - 2012-07-25 08:07:41
Hi,
first of all: sorry it took me so long to answer, been on vacation the last few weeks ;)
Second, thanks to all of you who took the time to read through my post an reply, especially as you put a lot of effort in some of those answers.
It's currently not stopping me from living a good life. But it is stopping me from living a "normal" life, my EP did give me a few restrictions concerning sport and physical acitivities involving weights or too much shoulder movement. And it's constanly at the back of my mind which does get a bit tiring at times.
Still I'll be finished at University in October, got a wonderful new girl-friend and so on, so it's not all bad.
I know that as I'm not paced my risk of developing CHF is considerably less than with having a pacemaker, but still there remains the issue with the valve which can get damaged over time or when having the leads removed which concerns me a bit.
The thing is that at least until now I haven't needed the Device and no one can tell me if i ever will (f.e. my dad who is almost 60), sure if I'd had a life saving shock I may be thinking differently about it.
And what bugs me even more that there is a new System out and has been out since before my implant which is perfect for young people who don't need any pacing, the Cameron Healt S-ICD. (which is inserted under your skin an thus doesn't carry any of the risks that leads inside your heart do. It can be removed easily, and the leads are more durable or a predicted to be. And your range of motion isn't restricted at all.)
And of course my docs didn't tell me about this and asking them insurance won't cover a Device-switch until the old Device breaks.
Anyone here who has had an ICD for a long time?
Cheers
Chris
You know you're wired when...
Your old device becomes a paper weight for your desk.
Member Quotes
I am active and healthy and have been given a second chance.
long term pacing
by Tracey_E - 2012-07-01 07:07:37
Once leads have been in for more than a year or so, it's all the same procedure to remove them, two years or ten years makes no difference. They can be removed with a laser sheath. The technology gets better every year and it's not as high risk procedure as it used to be.
There are some indications that there may be some long term complications from pacing, but really, we are the first generation that will be pacing long term so we're the guinea pigs. No one knows how the body reacts in 50 or 60 years because they weren't readily available 50 years ago.
I got my first pm at 27 for a congenital av block, so my heart is also structurally normal. I pace 100% and no complications so far, I'm 45 now. There are a few here who have been paced 30 and even 40 years, and they also do not have complications that I am aware of. But we are pacing, you are not! Your electrical system shouldn't be affected negatively at all because you are not pacing. The icd is there as a back up in case you need defibrillated, that's all.
I have heard of a few people with regurgitation, but it's not a problem, just something that happens occasionally.
I don't worry about the long term complications. I stay aware of the research and studies but don't dwell on it. Without my pm, I would not be here so if I eventually have problems, so be it. I have already had almost 20 years of good health I would not have had had I been born the same year as my mother. Technology gets better and better all the time, I pray it will be good enough to take care of me when the day comes I have problems with pacing. But again, I pace every beat I take, you do not. You simply have wires there as emergency back up so your risk is very low.
The reason all icd's have pm's built in is sometimes after the icd fires, the heart needs help to get going regularly again. Rather than have it off, it might be better to have it set to on demand, so it will be available to pace but only if you should ever need it.
It's up to you if you choose to keep it or not. It only has to fire once to save your life, so even if you never need it, it's a good insurance policy.
Your English is excellent, no problems whatsoever understanding you :o)