surgery date--march 9th

hi everyone. i am new to this website so i wanted to introduce myself and get some helpful advice from people with pace makers

my name is noelle and i am 21. i am married and live in maine. we live in a big house with my mom and dad, and sister. i really can't be on my own all day long while my husband works because i am in a wheelchair and it is more helpful to be around people. i have a form of muscular dystrophy called friedrich's ataxia, and my 14 year old sister has it also. the heart condition i have is called hypertrophic cardiomyopathy and i will be getting a pace make defibrillator on march 9th.
i go to a cardiologist twice a year and wear a heart monitor for a day for her records. she has been mentioning this since i met her 5 years ago. on my last monitor, i had 4 short beats of what she considered dangerous rhythms. that is what hurried the pace maker thought along. i have never had a heart attack or anything, so at this point it is a preventative to protect me from anything ever happening.

at first i was not so nervous. just anxious to get it done with. now that the date is approaching i am more scared now. everyone i know is telling me good luck and they hope everything will go okay. i guess it is hitting me now. i am mostly worried about the anesthesia, which seems rather odd to me. i am not worried about the healing time because i have had numerous tattoos, so i can deal. i meet my surgeon on the 3rd, and i met the doctor who connects the leads on febuary 3rd. he told me about how the devices can sometimes "shock" when it's not necessary. patients describe it as "getting kicked in the chest by a horse" feeling. grrrrreat. that eases my nerves.
has anyone ever had an incident when the pace maker shocks when not needed? what's it feel like? is this likely to happen? he also mentioned that the leads are less likely to become detached or anything because i am not very active and am in a wheelchair.

7 Comments

New Defib Unit

by SMITTY - 2009-02-25 05:02:51

Hello Jetblackstarsx,

Welcome to the Pacemaker Club.

I don't have a defibrillator but I have been a member here for several years and have seen people speak of what you are concerned about, but not very often.

I think that doctor should be ashamed of himself to put such concern in the back of your mind when yes there is a risk, but not a big risk. On the other hand read the article below. While reading your post I recalled having seen an article on this subject and was able to find it. Maybe you should show it to that doctor and tell him you want one of these defibrillators.

"Dr. Andrew Grace and colleagues from Papworth Hospital and University of Cambridge with collaboration from Cameron Health of San Clemente has devised new Implantable cardioverter defibrillators, which are devised to detect shock waves // from the whole heart rather than part of the muscle. This new devise helps to detect small alterations in heart rhythms accurately by scanning the whole heart, which could avoid unnecessary electric shocks to the chest.

This new Implantable Cardioverter defibrillators (ICDs), detects shock waves from the whole part of the heart by working as an Electrocardiogram rather than the conventional Implantable cardioverter defibrillators which detects shock waves from small part of the tissue which leads to unnecessarily giving shock to the patient leading to unpleasant situation. This new ICDs has sensor electrodes and magnets, which make them accurately receive electrical activity against which electric current can be given. This new device has the advantage of detecting shocks accurately, which avoids unnecessary electric treatment. Researchers feel a clinical trial has to be done with the use of the new ICDs before it is used as a routine treatment."

As for the surgery, like I said I don't have a defib unit, but my pacemaker surgery was no problem whatsoever.

I wish you the best and hope you can let us know how things go.

Smitty

New Defib Unit

by ajones - 2009-02-25 09:02:47

Jetblackstarsx,,

The surgery is a breeze and you have nothing to worry about. I have had a defib unit for just over a year now and have never been shocked by it. Matter-of-fact, the newer units try to pace you out of a dangerous rhythm before it shocks you. If I were you, I would ask the EP if the unit you are getting does that. As young as you are, I would imagine that you would paced out of the event pretty easily. Ask your doctor.

Andy

Also

by Broken Hearted Jane - 2009-02-26 08:02:23

I forgot to mention that I also have hypertrophic cardiomyopathy.

Greetings from Boston

by Broken Hearted Jane - 2009-02-26 08:02:33

Hi Noelle,

I have an ICD (since I was 16---I'm now 23), and have NEVER been shocked when it was not warranted (I was practially running with heavy bags the two times I was defibrillated conscious). That kind of thing was never even mentioned to me when I had the procedure. I imagine it happens VERY RARELY---not something you need be worried about.

As for the shocks themselves---they are a little hard to describe. It stuns you at first, but is overwith so quickly that you barely have time to realize what happened. It is extremely uncomfortable (I wouldn't even say painful) for a fraction of a second, but the next moment you are back to feeling just as you did beforehand. It really is just that quick, and there's no aftereffect whatsoever. Both of the two times I was shocked (and was conscious), I got four shocks within about 7 seconds of eachother. It's unpleasant, but not terribly painful, and as soon as you know what's going on, it's not as scary as it might seem. The second time it happened, I was alone, rushing to a connector flight in an airport, began to feel lousy, and sat down next to a wall near the entrance of a ladies' room. In a busy airport, no one even noticed anything was wrong. I was just that subtle (no screeching in agony or crying out, or anything like that). Just waited for it to pass and for my body to feel normal again. And then I got back up and made my flight.

Since you use a wheelchair and your irregular heartbeats have not resulted in an arrhythmia or anything like that, I doubt you'll ever have to experience these shocks anyway. I only ever hear from my ICD when I'm dashing about airports and train stations or behaving badly where stairs and steep hills are involved.

I wish you all the best!

Maine Medical center in Portland?

by BillMFl - 2009-02-26 12:02:52

Hi, I live in Florida and have a summer place in BoothBay. Not that far from where you guys liive. I look foreward to being up there in June. Maine Med is a very good hospital if thats where you are having your surgery. And don't fret about the procedure. All of us here have been thru the same or similar and you will be much safer with it.

Surgery Pals

by Sandee - 2009-02-27 11:02:20

Hi Jetblackstarsx,
I get my pacemaker two days after you get your implanted defib. I'm scared too. I have been much worse about bugging my doctor(s) than you have. I had one cardiologist and then went for a second opinion. I selected the second opinion cardiologist because he is actually an expert in my problem, & seemed kinder.

Since first seeing him, I have had five or more tests and talked with him about each one. I have written three letters, made 4 phone calls and had two consultations!

So, don't feel guilty if you need to make contact to gain reassurance about your medical needs. You are really important and have only one heart so do what you need in order to feel okay with this! I'm still trying to get there too. It isn't easy.

So, we need to keep track of each other since our implants are so close together. I'm really sad about the loss of my ability to lift. I have always loved to rake leaves, turn mulch and putter around in the garden. I think I should move to a condo and get some potted plants now, except that I have a cat that would chew them to tatters. LOL!

You have your family for support. Make sure to keep them "in the loop". They care and can help you as you attempt to resolve some of yor2ur worry.

We should both log back on in the week after and see how the other is doing! We will be just a little bit "robot" after this. I hope no one nic-names me R2D2...on second thought there are worse things....

muscular dystrophy

by pippt36 - 2012-04-28 07:04:42


I too, have a type of muscular dystropphy. For years I was told it was Spinal Muscular Dystrophy but last week, after a consultation it was decided that it was Limb Girdle MD. Apparently, both of these MD types can affect your heart .
My cousin’s daughter has Friedrich’s Ataxia so I know a little about it.
I have had an ICD for two years becaue of arrithymia and so far all has been fine. Took me a while to really forget it was there but now I seldom think about it. Hope all went well for you. I was also worried about the anesthesia but ,as everyone told me, the anesthetists do this job everyday all day and it is what they have been trained for.

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