Should I have a pacemaker?

I was diagnosed a few months ago with AV dissociation, I have mild symptons dizziness and breathlessness, along wih bradychardia. But am 34 and have had these all my life and never worried about them until I had an ecg fro something else and the problem was picked up.

I'm not in permanent 3rd degree heart block, my rhythms change constantly and with no consistenty.

I have seen severeal consultants and twice had a pm operation cancelled, but have finally booked in for the operation on Wednesday morning. And am absolutley terrified, I have 2 young children and am worried about how this is going to effect my life.

I'm also not sure if I really need one and wanted to know if anybody else has been in this situation? The consultant gave me the choice and wanted me to weight up risks related to the proecdures and infections, against the risks of sypmtons developing further and me blacking out or having a cardiac arrest. It will only be set to pace if my hr drops below 40, as my normal rate is about 44 and I've managed fine so far. It feels an awful lot to go through, for a preventative measure, that may not even be needed for another 20 years. However he has also said that symptons could develop next week, or even in a year which could be catastrophic if I was driving with my children in the car.

Really don't know what to, tempted to cancel the operation, but don't want to live without one worrying.

Eve

5 Comments

Should I Or Should I Not

by SMITTY - 2009-08-01 01:08:59

Hello Eve,

You do have a big decision to make, with that I'll certainly agree. As others have said, the pacemaker surgery is usually a minor procedure, considering what is done. By that I mean the pain should be minimal and the restrictions should be short lived. But that word "should" is the key word. For the majority of us getting a pacemaker is, well, let me put it this way I've had dental work that was a bigger bother than getting my peacemaker was. But as with any surgery there are no guarantees. However, in my opinion the risk is decreased proportionally to the amount of experience the surgeon has in implanting pacemakers. I know they all have to learn, but I say let them learn on someone else. I want only the most experienced one available.

Moving past the surgery now, getting a pacemaker can be a life changing event. For example, take a look at the posting just below yours, "Are You Disabled???" and the relies to that one. As wrong as I think it is that is a real possibility for anyone getting a pacemaker to be called disabled.

You say you have two small children, How small. Are they of the age that you have to pick them up from time to time to care for their needs? The reason for that question is you will be limited on arm use for a while. Since we are all different, and your doctor will know best about any restrictions you should have as a result of the surgery, I think an answer to that must come from him.

Of course I'm no doctor and even if I was I have no idea about the results of your various tests. But, I've got to say, implanting a pacemaker and being able to give you a low set point of 40 sounds like a stretch to justify the need for a pacemaker. To quote a statement in your message "The consultant gave me the choice and wanted me to weigh up risks related to the procedures and infections, against the risks of syphons developing further and me blacking out or having a cardiac arrest." I don't think that is even a fair question to expect you to answer. That part about risks is, I think, for the doctor to answer. But, let's face it, you also run the risk of being run over by an eighteen wheeler each day. Is the eighteen wheeler encounter a greater risk than the possibilities the doctor names, probably not, but who can say for certain.

To add to your decision problems, I have to ask how much confidence do you have in the diagnostic capabilities of the consultant? How much confidence do you have in the diagnostic capabilities of the surgeon that will implant the pacemaker? Can you live with yourself each day without worrying constantly, if you don't get the PM, or will be afraid to step out side? Above all, will not getting a PM affect your home life?

That is four questions. Answer them and I think if you give the same answer to three out of the four that may help tell you what to do NOW. Just remember what you said about having had the surgery put off twice. I don't how much time passed during your doctor visits and testing, but you are still here and you can always tell the doctor it is time when you think the time has arrived.

I wish you the best,

Smitty

Thsnks

by evejose - 2009-08-01 04:08:13

Thanks for all your comments and support, nice to know you guys are out there when I need a bit of advice and support. My family and friends are struggling with this themselves and don't know quite what to say. My condition was discovered completly by accident, when I was in hospital for something very minor and unrelated. I'm young and healthy and don't feel the slightest bit unwell (other than symptons I've had all my life), so it's all a bit of a shock.

In answer to your questions, yes my children are very young, 4 and 17 months and bit of a handful, but my family and friends are lined up to step in over the next couple of weeks and help out.

I'm not scared to step out of the door and have managed to carry on pretty well since I was diagnosed, but I know without one there will be limitations. I do feel a little disabled without one. It's unlikely I will be able to continue work, not that I have a physical job, but I work for the government and travel reguarly and I don't think they would want me to continue working without one for their insurance purposes. We were also considering trying for a 3rd child and my consultant has told me that i shouldn't try for another baby without a pacemaker. I was apparently very lucky with my first 2 pregnancies. Other than that I don't think Life will be affected too much at home, but I will always be looking over my sholdur.

I do have complete faith in my consultant and he has elceted to do the operation personally, rather than leave it to one of the more junior doctors. Though before I met him, I had been misdiagnosed once and passed from consultant to consultant, whilst they decided what to do with me.

I think you have helped me make my decision, which was nearly made already. I could say know, but I'm only delaying what is inevitable and it deosn't sound anyway near as scary as I thought it was to start with. Though I wish they could knock me out, I hate blood an needles!

I may well venture on here again with pre-stage nerves in the next few days. But hopefully the next time you'll here from me I'll be complete and on my road to recovery with my new pacemaker.

Thanks once again.

Eve

Don't worry

by Lizzie - 2009-08-01 05:08:05

Hi Eve,
I had my pm 4 weeks ago and it has been good for me. I wasn't sure i really needed one but as it has turned out, while they were doing the procedure (for bradycardia and rhythm disturbances) they found other reasons as well. Too long a pause between stimulation and heart action.
I', personally very glad after I had it done. No more really slow pulse, faints etc
The procedure I handled quite well, not too uncomfortable, just pushing sensations.
Healing has been ok & yesterday I had my first checkup. Told it was perfect and could resume my normal life. That includes playing a sport at top level,
so I played today & was suprised just how much more energy I had.
Do hope things go well for you. I'm sure it will & you'll have more energy to deal with the family etc
Lizzie

Only you can answer this one.

by TLR - 2009-08-01 05:08:45

Having a PM fitted is really not as bad as it sounds, honestly its not.
I was in a similar situation to yourself back in January when I was diagnosed with complete block, totally out of the blue, I had shown symptoms but at 31 years of age I put it down to everything else other than a heart problem. I was worried about my quality of life after having it fitted but these worries were totally unfounded. I am still doing my dream job as police firearms, still ride my motorbike, still kick the ball around the field with my 2 kids, still do a lot of things Medtronic say I should avoid, still go to the gym when I want and I'm even thinking of cycling over to Europe next year to raise some money for heart related charities. If anything I have found a new level of health and fitness I could never have acheived prior to the PM.
You have to weigh up the postives and negatives and make your own choice. Okay the first few weeks will be hard with the reduced mobility and function that having MINOR surgery (which is what a PM is compared to major heart surgery) ultimately creates but afterwards you'll be right as rain. And like the doc says there is a risk of infection, but that can be minimised and as was one of my considerations, a dose of anti-biotics is better than blacking out in the car and killing your whole family in a nasty motorway pile-up.

Hi Eve

by Hot Heart - 2009-08-03 09:08:11

Dont know if youve got your pm yet, but theres no blood and i never saw any needles. Just lay and chatted to the nurse (was terrified before I had it done). lol.

As a mum i think its best being done, i used to go dizzy years ago when my kids were little, thinking back i could have passed out when i was on my own with them.

Honestly pacing isnt that bad you know, its better than blacking out by far!

HH

You know you're wired when...

You participate in the Pacer Olympics.

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