Second Guessing...3 years later
Hello All,
I just found this site, and hope to learn a lot and be as active on here as possible. Let me give a quick background on me and my situation, and I'd appreciate any comments and suggestions from anyone.
About four years ago, my uncle went into full cardiac arrest. He had a pretty severe case of Hypertrophic Cardiomyopathy. Luckily he survived, but his cardiologist suggested that everyone on that side of the family have an echo done. To make a long story short, the cardiologist at the Cleveland Clinic thought I had a minor case since my septum was about 19mm thick. But before discharging me, he realized that my q/t was prolonged. I think I've seen it range from 480-590 m/s. The doctor had me see his colleague at the Cleveland Clinic in Weston, FL (since I was living in Fort Myers at the time) to have a T-Wave Alternans test performed. They didn't do that particular test at the clinic, but the Electrophysiologist (Dr. Sergio Pinski), said that he would recommend having an ICD implanted regardless if the test came back positive or negative.
Prior to seeing any of these doctors, I've always played sports, worked out, and never had any issues or experienced any episodes of syncope. Occasionally I would feel a lot of pressure in my chest and feel the heart beating hard without doing anything too stressful. I would breathe in and out deeply and fast to alleviate the symptoms. But again, never had any issues aside from that.
Do you think the doctors jumped the gun in having the ICD implanted? I really feel fine. Dr. Pinski had said that it may NEVER go off, but if it does, it will save my life. There really hasn't been a day that's gone by since the surgery that I wonder if I should have it removed.
I'm a 32 year old male, very athletic, great shape and good looking I didn't need to include the last part, but ever since I had my ICD implanted three years ago, I am very self conscious of how it looks. I've had ex-girlfriends that didn't mind the device at all, but I really can't stand looking at it. Maybe I am just being too vain, but I often ask myself if I really needed to have the device implanted. I hate when people look or ask questions when I have my shirt off.
I apologize for the long post, but I wanted to give at least some background to my situation.
Thank you!
13 Comments
No...
by chip - 2009-08-28 02:08:49
After reading your background, no I dont think the doctors rushed to judgment by implanting the ICD.
Cleveland Clinic is a world renowned and very highly respected destination treatment center for heart aliments. You were in the best of hands.
Think about it this way If the ICD fires and gives you a second chance at life it is a very valuable gift that not many people get.
When people see your scar and ask questions use the opportunity to educate them about heart disease you may just save a life yourself!
&...
by chip - 2009-08-28 02:08:58
Where are my manners...
Welcome to the club!
This site is a treasure trove of real life information all avaliable simply for asking!
Completely understand...
by turboz24 - 2009-08-28 03:08:48
I'm 36, going on 37, workout 1-1.5 hrs 5 days a week, in good shape and I completely understand your feelings about your ICD.
I actually take it one step further and do not remove my shirt in public/private and when I have to, ie take a shower, I do not look at myself until I'm "shirted" again.
Now, mine has shocked me 2 times, and paced me 2 times, but has done nothing since my ablation in March of 08'.
I would "keep" it if it wern't for 2 things. It's damn ugly..... and it causes occassional pain. I do not think it's vanity, you just can't not look at it. I mean, if you have a perfectly clean carpet, with a big stain in the middle, everyone is going to see and focus on the stain.
My solution is to keep it covered until... 1. it's removed and not replaced or 2.... I have to have one, but my new EP relocates it to a sub-pectoral implant (which he said he would have done in the first place anyways).
Should I Or Should I Not
by J.B. - 2009-08-28 03:08:57
You question is "Do you think the doctors jumped the gun in having the ICD implanted?" That is asking a question that has two answers. One answer is yes, they jumped the gun if the ICD never goes off. The other is no they did not jump the gun if it ever goes off. It all depends on whether it is ever activated or not and only you or your survivors will ever be able to answer that question. In view of this I don't see why it really should matter what others think about the doctor's decision.
If you are happy with the having the ICD and since T-wave alternans is a phenomenon that consists of beat-to-beat variability in the amplitude, morphology, and sometimes polarity of the T-wave, it may trigger life-threatening arrhythmias. In view of this I don't see why it really should mater what other think about the doctor's decision.
I would ask one question and that is did the good doctor put the possibility of your needing the ICD some day in to percentages of probability? When it is all said and done we all have at best a 50/50 chance of living to the days end. In other words we may or we may not.
I would like to ask one question and that is did the good doctor put the possibility of your needing the ICD some day into percentages of probability?
When it is all said and done we all have at best a 50/50 chance of living to the days end. In other words we may or we may not. I'm sure you will get several replies and the answers may vary all over the map. It will be interesting see what others have to say.
I'd keep it.......
by Katielou - 2009-08-28 04:08:14
Hi Proudman,
Welcome to the club and hope we can help you.
I too have an ICD which came as a great surprise when told I needed one. I have Long QT syndrome and like you have a prolonged qt of 460m/s (and higher). I hated the defibrillator initially but how grateful I am that I have been given this little piece of equipment that has saved my life several times. For sure I would be dead without it and for me having a bulge under my pectoral muscle is not too big a price to pay. I can understand your feeling that you think you might not need the ICD, as it appears to have been implanted whether your findings were 'negative or positive' but with a qt such as yours I think I'd feel more secure with it than without.
I've experienced cardiac arrest because my qt results in ventricular fibrillation of over 400bpm which is a truly frightening experience. The ICD has brought me back every time.
Maybe yours will never go off and i hope it doesn't, but better it's there if needed don't you think?
I hope you will be able to adjust and eventually come to terms with everything. Be sure before you make any decision to have it removed.
Good luck to you.
Lesley
Should You ---
by SMITTY - 2009-08-28 04:08:59
I have to go with our friend Frank on this one. If the ICD is not causing a problem then let it ride. However, let me say there are more ways for it to cause a problem than just a physical one. We frequently see people here say something about having a defibrillator or pacemaker causing them to be unable to get insurance or being passed over for some job or causing them to have other restrictions placed on them. But, first you have to consider the risks of having it removed. Of course even then that should be done only after you get another opinion on your need for an ICD.
When I first read your posting the thought went through my mind, "uh, oh, sounds like somebody may have an ICD based more on speculation than fact." Now I don't fault any one that accepts a doctor's recommendation of getting a PM or ICD as they are the "exoerts." But, I do question if all doctors do enough of a risk assessment before recommending one.
You say you are a new member, well let me say welcome to the PM Club where opinions are many and they are all free. The free part is probably the best part about most of them, but occasionally we get input from some our members that know about what they are speaking. Also, I expect that you may be surprised at the number of problems and the many different problems people have with their heart assist devices. To me this really brings home the fact that there must be a lot more of these devices being implanted than there are qualified people recommending, implanting and doing the follow up on the devices.
I wish you good luck,
Smitty
Thank you all for the insight!
by proudman - 2009-08-28 05:08:47
First off, thank you all for your insight, opinions, and for welcoming me to the "club". I would have checked back sooner, but didn't realize any comments had been made. I thought I selected the option to email me when comments were left.
turboz24: I do take my shirt off in public and private, but would obviously prefer the device wasn't there. i don't mind scars, but the lump is what makes me self conscious. i was and still am a little upset that the doctor didn't offer the subpectoral option to me. It probably wouldn't have been as noticeable. I hate that it's been almost three years since the surgery, and I have not accepted or embraced it.
Smitty: I'm sure I am going to run into insurance issues because it is a pre-existing condition now that I left my last job and didn't carry the COBRA. And it has also been hindering me in my quest to go to Korea to teach English and travel for a year. I think because of the language and cultural differences, it's hard for them to understand that I got this as a precautionary measure. I had a job to teach for the public schools in Seoul, South Korea, and I disclosed the fact that I had an ICD to my recruiter shortly after receiving the contract. They told the folks at the metropolitan office of education, and the offer was quickly withdrawn. They told me that they do not and will not hire anyone that has had any kind of surgery that involves the heart. So I have been disclosing this upfront as I email other private schools and recruiters, and have gotten ZERO responses back. So it definitely has presented a problem.
Katielou: Wow sounds like our q/t intervals are very similar. I'm going to knock on wood right now in hopes that I can continue another three years and longer without getting shocked. But if it has to, then I'm all for it. Is your ventricular fibrillation and cardiac arrest due exclusively to your prolonged q/t, or is there another condition that triggers it? I guess I'm lucky, and need to be happy.
I did add a shirtless pic to the gallery to see what people thought of the ICD. To me it is very noticeable! It's kind of funny when you get people looking at it, but then try to BS you by telling you that you can't really notice it, or it looks fine.
Thanks again everyone! I look forward to any other comments and thoughts, and hope to be able to contribute as well.
Take care!
Why my last nurses were so nice..
by turboz24 - 2009-08-28 07:08:21
When I was on the table for my ablation, the nurses who work with my new EP said "Oh, that does look pretty bad...." I was shocked with their honesty...
Yours looks more painful than mine, it looks like it's almost sitting on your shoulder vs your chest. Mine sits lower and closer in.
Another way to look at the decision
by ElectricFrank - 2009-08-29 01:08:03
If you don't take it out and it doesn't fire you will live many years knowing you made a mistake.
If you take it out and your heart stops, you will only be aware of your mistake for a few seconds.
As for the looks, you will look much worse dead than alive with a scar.
My suggestion is to spend a week at a nudist resort!
So that is my free advice, and worth every cent you paid for it.
frank
Don't know why..
by turboz24 - 2009-08-29 02:08:45
I have no idea why most people say scar. The scar doesn't bother me, it's the cell phone sized hump with a tail(the cable) protruding from my chest I don't like.
Yep..
by turboz24 - 2009-08-31 01:08:38
My ICD is around 2.5-2.75" in diameter and .42" thick. I believe my model is 34cc without the connector.
When you stuff that under 1/8" of skin, it's pretty obvious and can be painful.
Hump
by ElectricFrank - 2009-08-31 12:08:08
The ICD's are quite a bit larger than a pacemaker only unit. Mine is circular and about 2" in diameter. It sticks up enough to be obvious, but I don't think it is as thick as an ICD. Since the ICD's have the defibrillator function they need space for a capacitor to store the charge. They also need to keep the capacitor constantly charged which requires a larger battery.
I wouldn't want something that size implanted deep in my body. It would be asking for trouble. So it is really a matter of whether you think your risk of a cardiac arrest is great enough to warrant having it. What risky activities do you pursue? It is always interesting to me to find people who are talked into all sorts of medical stuff to avoid risk, but who also jump out of airplanes, race motorcycles, don't wear seat belts, etc.
frank
You know you're wired when...
Your device acts like a police scanner.
Member Quotes
It made a HUGE difference in my life. Once I got it, I was finally able to run, and ride my bike long distances.
Second Opinion
by ElectricFrank - 2009-08-28 02:08:07
There is an alternative to having it removed. Since it isn't doing anything ,but monitoring your heart at this point the batteries should last a long time. I'm only guessing since I'm not as familiar with ICD's, but 10 yrs wouldn't be unreasonable. So why not keep it until battery replacement time rolls around. Then re-evaluate whether to put in a replacement. By then you will have time to have monitored the progress if any of the suspected condition. There will also likely be more known about it.
I can understand your concern about having the ICD if you don't need it. I expect there will be a scare campaign somewhere in the future to try to get us all to have an ICD implanted. I've already told my cardiologist to not even think about giving me one as part of my replacement in a year or so. He sort of smirked when I mentioned it so I think I hit it on the head.
frank