doctors and icd

Hi,

as I said in my previous post I had an ICD implanted, following tachycardia attack.
During three week that I spent in hospital ( due to complications and some hospital bacteria ) doctors told me next to nothing.
And of course, they didn't tell me anything about quality of life after icd implant. Before the op I was going mountaineering on a regular basis, and running 100 yards to catch a bus didn't present itself as a problem.
Now it feels like I have a power limiter built in, and simply can't run up the stairs.
Is it possible that icd works as well as a pacemaker, and thus limits heart rate ? As far as I know peacemaker sets heart rate at around 80, consequence of which is limited physical activity. As far as I can see here some people continue with their activities as before the operation, and don't really know why should icd effect your energy level and condition ( when not kicking in ).

Another question is re doctors. It seems to me they just won't tell you what is really happening, as well as consequences of what they do. Why is that ?

8 Comments

wavelength

by JackCarter - 2015-08-19 02:08:38

Thanks for your comments, and I completely agree.
After being in hospital for two weeks I finally saw my doctor, during her morning round. Since I was being given antibiotics for two weeks I asked what's that all about ? She smiled and said ' We're obviously not on the same wavelength, but we'll get there eventually '. And that was my cardiologist, head of the ward.
During the icd implant surgeons started swearing and panicking, cos that same cardiologist didn't send them roentgen of the heart and thus they couldn't find the right vein to insert the electrodes. It was very Monty Python-like...
I guess I'd have a different experience if it wouldn't be NHS we're talking about.

ICD

by Lurch - 2015-08-19 03:08:01

Yes, ICD's can be adjusted. They also have pacemarker capabilities and it sounds like your's needs to be adjusted. Tell your doctor what you are experiencing, or better yet, tell you ICD Tech (they often are more aware of the settings than the doctors).

I see you have a Biotronik ICD, same as me. As an example my ICD is set to pace me if my HR goes below 40 BPM or above 150 BPM. I have started an exercise routine and on my next visit will ask my Tech to raise the upper limit to 170 BPM so I can go a little harder within the ICD kicking in.

Good luck. Ask your Tech for a print out of your settings then you can start learning what the various capabilities of the unit are.

In defence of the NHS

by IAN MC - 2015-08-19 04:08:42

I cannot identify in any way whatsoever with the comments made about NHS doctors.

Surely all medical treatment depends on the personality of the individual cardiologist. I have seen 3 cardiologists so far on the NHS; all have been totally open and have always fully discussed the reasons and possible consequences of their actions. I could not fault them in any way.

I am certain that any problems we encounter with individuals is absolutely nothing to do with the funding systems for the healthcare.

Jack; the pacemaker part of your implant does not limit you to 80 bpm; if that is your base setting it simply prevents your heart from going lower than that .This will not limit your physical activity.

If you were doing your 100 yard dashes to catch the bus without any problems , why exactly did you get an ICD / PM ? You must have a cardiac condition which led to the implant ; could it be that it is your cardiac condition which is limiting your physical activity and not the ICD ??

Cheers

Ian



condition

by JackCarter - 2015-08-19 08:08:34

It's great to hear other's experiences, thank you :-)
OK, I was maybe a tad harsh on the NHS - team that did icd op was brilliant. They worked fast, for them it was a routine operation except for the fact they didn't get roentgen of the heart. In fact, it was so much of routine that they didn't check if they got it.
Still, over those three weeks I became a sort of an insider and saw a great deal of stuff patient shouldn't' know. Nurses were arguing about who's fault it was that head nurse found out I got infected by hospital bacteria, and asked me to fill in a questionnaire about their service. Last question was ' would you go to newspapers or tv to let them what service you received ?'.

Anyway, the reason I had to have icd implanted were two tachycardia attacks that happened this year. First one was mild and the second one was Ventricular Tachycardia, and they had to defibrillate me some dozen times.
Since I was born with Tetralogy of Fallot I have enlarged heart and my HR is typically bellow 50.
I had an operation when I was five. Still, my condition didn't prevent me from living next to normal life.

In some two weeks I'm going for first major check up, I'll be seen by a surgeon who performed the operation. And of course, I'll ask him all sort of questions.

@ busrider
I was never vey fond of marmite, but I really do miss beans on toast :-)

ICD

by dhusemann - 2015-08-20 05:08:32

i would have the settings evaluated on your visit.

the Pacing will have a lower limit before it kicks in. Bradycardia

Cardioverting may be kicking in, it will add extra beats when in heart is in a Tachycardia state. to try to convert back to normal sinus rhythm (at least that is my understanding of how that part works)

and of course the Shock if cardioverting doesn't work.

D

visit

by JackCarter - 2015-08-21 10:08:30

Yes, I'm looking forward to seeing my doc. Will ask him to evaluate settings and give me a printout.

Also, will let you know how that went...

beans on toast

by JackCarter - 2015-08-25 10:08:54

Yes, they're all about a basics - sugar, fat, bread... since I moved to Croatia I can't seem to find them, nobody sells them :-(
ahh, what a sad and dull life I have...I '' have to have them shipped over :-)

NHS

by capman - 2015-09-28 12:09:32

Yes, I too have to jump in here about the NHS. I am under the care of a cardiologist in Birmingham (UK, the real one) but I live 35 miles south. When my heart and ICD went into warp drive recently I had to go to Worcester (also the real one, UK) where the cardiologist was in constant touch with my Birmingham one. Both are always ready to listen, give full explanations of treatment plans or the associated problems and solutions. I can't fault them. I have a serious mental issue with the repeated firings recently, but reading this and realising I am not alone is helping more than I can say.
On the issue of not being able to run anymore, I don't think it is the pacing of the ICD. As someone has already said, the upper pace is usually above 150. Its more likely the drugs you are on that control your heart rate, or your cardiac function itself. I play tennis but can only manage a couple of sets before I have to pack in. If I do too much, I will feel really rough for an hour or so. But I still play
tennis! Before this episode I was a regular competitor at competition aerobatics, pulling up to 6G and pushing -4G. Don't give in to the dam thing, it has a job to do, but you have a life to live.

You know you're wired when...

You can hear your heartbeat in your cell phone.

Member Quotes

I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.