total dependency on ICD?

I thought a PM/ICD paced for you when your heart is not doing the job? Although not good, my EF was 30-33, and pulse was mid 50's-low 60's. That's not too, too bad compared to some, but when my cardiologist said I should get the ICD,I did it. At any rate, at my 1st follow up w/ the EP, I was told I was pacing at 99%. Some settings were changed then and I was told my heart rate was set at 68-70. and would get a KICK if it went to 180. Since then, I am having problems exerting myself. When I use the stairs or take a walk, my HR goes to at least 90+, I get very winded and feel that hard chest pounding. When I called the EP's office re: this the tech told me that my heart was stopped during the surgery in order to kick in the ICD and that I am now 100% dependent on the ICD. If my heart was working at least partly on it's own, shouldnt the ICD just be picking up where mine isn't working? I dont like being 100% dependent on Gizmo. And Im also afraid when I start back at the gym or walk, that I'm going to get "kicked". I guess my question is.... are most of you (or is everybody) 100% dependent on your device once it's implanted?

6 Comments

icd test fire.

by mikej - 2010-02-09 01:02:23

they stop your heart after inplant to test fire the defibulator(make sure it works) normal procedure,and like u mine is pacing all the time 100% of the time also normal,i can no longer do stairs either without becoming winded,my cardiloagist says that wont change ,focus on something other than getting zapped it may never happen,mine has never fired,and i push myself a lot of times when i know i shouldnt,yet it hasnt fired so dont let that be your focus.

PM Checkup

by SMITTY - 2010-02-09 02:02:57


Hello Irisheyes,

I'm no authority on your situation but I will venture a guess that you are not pacemaker dependant, even though your pacemaker is working 100% of the time.

Now let me explain my boldness a little. You say your heart rate was in the 50 - 60 range before you got your pacemaker. The low set point is now 68 - 70. That means if you did not have the pacemaker your heart rate would again be in the 50 - 60 range, but in order to keep it in the 70 range the pacemaker is working full time. I know it may sound like a contradiction, but just because your pacemaker is working 100% of the time does not mean you are dependant on that little device to stay alive.

You say that when you walk up stairs your heart rate goes to at least 90, so I'll make another guess. That being the rate response is activated. Its job is to increase your heart rate any time it thinks you are doing something physical that should require a faster heart rate. If that is what is going on, (your doctor can tell you your's is on) you may not need it or it may make things worse. Even if the rate response is one, I doubt that the upper limit it will increase your heart to is even close to the 180 BPM it will take for your defibrillator to kick in.

I have tried the rate response on mine 4 or 5 times and each time it caused me more problems than it was worth. For me it would get the upper and lower chambers put of sync and cause pain in the middle of my chest. So I decided enough is enough and had it turned off and it will stay until I decide I need the thing.

Now I'm going to be critical of that tech. If your heart was stopped to test fire the defibrillator, it would have been for the shortest of time and I know of no reason that would have made you l00% dependant. From where I sit, this sounds like it could very well be another case of a tech running their mouth before their brain was in gear. Or put another way, that tech didn't know what was going on and they thought it necessary to say something that would make them sound like an expert.

If I may, I suggest that you make a list of your questions/complaints and present them to the doctor.

I wish you the best,

Smitty

Hmmmmmm..

by Pookie - 2010-02-09 11:02:18

Hi Irisheyes.

I don't know a lot about pacer/defib combos, but I was under the understanding that the pacer was there to pace your heart ONLY when your heart wants to beat below your lowest setting (70), like my pacemaker paces when my heart tries to go below 60 which is my lowest setting. If my heart is going above 60, then it's my own heart doing all the work and the pacer just sits there monitoring or keeping an eye on things.

The defib part (which I do not have) is there to "zap" your heart back into a normal rhythm if it goes too high??? I could be wrong here because like I said, I don't know much about defibs.

I don't understand how your heart would be 100% dependent on the pacer from them stopping your heart in surgery, unless they damaged part of your heart. I am just guessing!!!!!!!!!!!!!!!!!!!!!!!!!! You need to ask your EP and/or cardiologist this.

Do you have the print outs from your pacer/defib interrogation???? If NOT, call and ask that they send you one. Your family doctor should already have a copy as well. (or at least they send one to the family doctors here in Canada).

And your getting winded & the hard chest pounding; please call your pacemaker clinic and be asked to be interrogated again. OR ask to be seen by your EP or cardiologist. It could be that your device needs some of your settings re-adjusted. Sometimes it takes several times before they get the settings adjusted for you as each of us is different.

When I got my pacer 5 yrs ago I was around 40%, then it went down to 27% and it's been as high as 72%, it varies each time I get it checked, which is every 6 months.

And how would your tech know that your heart was stopped during surgery???? Was the tech there?

I think you should be having a frank conversation with your EP, not the tech.

Pookie


New EP needed?

by agilitydog - 2010-02-10 04:02:47

No way should you go months without seeing your EP after installation! Techs aren't good enough.
You are legally entitled to a copy of the interrogation, like all your medical records. You need to know what the settings are, what they have been, what works for you and what does not.
And if you still have trouble on exertion, you probably need a rate response adjustment. Again. It may take several to get it right. And if you can't walk the 1/4 block right after an adjustment, GO BACK, even if it is the next day. Or the same day.
You are getting treated like pooh. If you don't get the attention you need, then I recommend you find another EP.

I think you all are right!!!

by irisheyes317 - 2010-02-10 05:02:36

Looks as if I have a $hi++y EP & an even $h!++ier tech!!! LMAO We're getting hammered here with blizzard conditions in Pa. so insisting on being seen immediately is out of the question. So I'll take it easy, but when this storm passes, you all have given me the ammunition I need to insist on some answers and definately some changes in my settings.Just wondering if I can change EP's this early in the game and if someone would take on another doc's case? Being a nurse (we make the WORST patients), I know they stick together. I just want my freakin' life back. Thanks again, from my gimpy little heart!!! XOXO

thanks all

by irisheyes317 - 2010-02-10 12:02:43

I do feel a little better now. Just wish I could get to see my EP! Apparently, his patients are "screened" for several months post-op and we finally get to see him after the 4th visit. Which really stinks! I saw him once before surgery and again the next day when I was discharged. I dont know him really as Im sure he was just assigned to do my surgery. My Cardiologist doesnt handle any ICD stuff so thats no help. As Ive said before, I didnt have dizziness, fainting, chest pain, S.O.B.swelling prior to this, just quite a few palpitatons, slower pulse and couldnt do hills. I was very active with swimming, hiking, camping, fishing, line dancing and working out at the gym. Now, I cant use the stairs to pee w/o getting winded and have my pulse rate go crazy! Prior to my1st EP visit for wound check/interrogation, I was walking daily and doing steep hills w/ no problem. The tech ran the interrogation, tore of the strip & left the room, returning telling me some "minor adjustments" needed to be made. Once done, I couldnt even walk 1/4 my block which is totally level. Somethng isnt right, thats for sure. What gets me is that this is routine for the EP... no big deal. Im sure he's done thousands. But for me, it's a damn big deal, especially since I feel way worse than I did before having the ICD. If it wasn't for you guys, I'd be crazy now! If this is the way my life is going to be, I may as well thow in the towel. SOOOO depressed! My questions are..... can I actually ask that turn this gizmo down? And will they?? And, why should we ask for a copy of our interrogation? I do trust my cardiologist and was hoping to get some answers from him, but my appt. was cancelled for 2moro due to the snow storms here in Pa. Thank you all again, so much.
PS I did respond to this last night but my post got lost in cyber space somewhere. So sorry for the delay in thanking you all.

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.