Impending surgery on 27 July 2017

Risk assessment

by Selwyn - 2017-07-23 15:18:19

Welcome to the club, Cheryl. 

There is nothing in life without risk, even staying in bed ( thrombosis, skin ulceration, weakening of bones, and even death..etc.). We walk up and down stairs without thinking of the fatality rate. You may even drive to the hospital which may have a greater risk than the procedure. 

The important thing is to think about the positives. Do you really need the operation? What would life be like if left alone? This club has 31 000 members. You will find someone with complications. What about the people with pacemakers that do not join the club? There are in excess of 3 million in the world with pacemakers ( my mother had one, my mother-in-law has one).  I suspect that we collect 'difficult cases'. The majority of pacemaker recipients just forget about their technology until they have their annual check up. 

The vast majority of ICD or pacemaker recipients are without symptoms. Pacemaker syndrome is rare with dual chamber pacing and sensing. There is a long list of 'what ifs?' to work through whilst raising your anxiety levels. It is best to avoid thinking of 'what if this, what if that, what if the other etc.' and best to concentrate on getting back to a form of normal health, albeit with the help of technology. 

The doctor's job is to inform you of risk. If you were to gamble, then odds of a 99% chance of a first place  win would see you placing your money without any  hesitation.

Come back to the club Forum and tell everyone of your experience.

With best wishes,

Selwyn

Welcome

by TBrous&Chip - 2017-07-23 21:28:15

I would have to go with the 99% chance of winning.  Besides what are the odds if you do nothing.

Great info and support on this site.  Best of luck.

Thanks all for the support

by cheryl2010 - 2017-07-24 05:00:25

Thanks Robin, Selwyn and TBrous&Chip. Your words are encouraging. 

My heart beat now is 45bpm, which isn't life threatening. My escape junctional rhythm is very good. As you all know, if the escape junctional rhythm (which is the backup when the AV node fails), there is a second backup (when the escape junctional rhythm fails) which is the ventriclular nerves which help to keep the heart beating still but by then the heart beat falls to 30bpm. However when the second backup is triggered, it becomes a life threatening event i.e. a pacemaker is absolutely necessary. 

I do not engage in strenuous activities, except that I run which I am willing to forgo. For the past 1.5 years I have been considering my options. I do not feel faint. However, my doctor tells me that there is higher risk of my heart stopping entirely (and strokes etc) as time passes. Doctor also said, the heart structure will change as the AV block continues. Unfortunately there isn't enough data right now to predict/estimate when will this happen as most patients who have a third degree heart block will install a pacemaker immediately. I have delayed this for 1.5 years as I am aware of the long term risks of pacemaker. I guess I have yet to come 100% to terms with this pacemaker being installed into my body.

As how Robin puts it, death does not scare me, stroke does. Imagine being incapable of doing anything and having to rely on others for your daily activities. The only reason why I have set the date for 27 July, is only because I fear not waking up the next day/bed ridden due to stroke. On the other hand, lying on the operating bed, I wonder if I will wake up after. Yes as what Selwyn says, there are so many what ifs. There are too many upsetting/extreme information on the website which my doctor did not mention. I figure it is because my echocardiogram came out nice and clean with a normal structurally heart which is why he did not think that the extreme risks of the operation does not apply to me. Having said that, it is good to read and be informed then to not know at all.

Just feel being in a conundrum, its like putting or not putting in the pacemaker has risks.

Doctor recommended me Boston Scientific. I understand that the wires can be from Boston while the pacemaker can be from Medtronic.  

I will definitely inform people who are on pacemaker in my country of this forum. It is so helpful. I wish more people are here to be informed and share instead of fearing on their own.

I know about Pacemaker syndrome

by Gotrhythm - 2017-07-24 14:34:33

I find it useful to ask, Regardless of statistics, what's the worst that can happen if I do? What's the worst if I don't? Then I decide what I would do if the worst did happen.

Suppose you wind up with pacemaker syndrome.I did. Pacemaker syndrome is rare and I even had a rare variant, PVC-induced Pacemaker Mediated Tachycardia. I know all about being in that 1%. :-) In most cases the chances of having pacemaker syndrome is greatly reduced by having a dual lead pacemaker. In my case it was caused by having dual leads. Go figure.

Pacemaker syndrome not a death sentence. It's not a terrible thing you just have to live with while your life is inevitably shortened. If you have pacmeker syndrome, your EP need will do some fine tuning of your device's programming to fix the problem. That's all. Then your chances of living out a normal life span are about the same as for someone without a pacemaker.

Well, not quite all. You've been living with a wonky heart for years. You might surprise yourself, once your pacemaker is adjusted to settings that are optimal for you, by how good you feel emotionally as well as physically, how much clearer your mind is, and how much better you sleep.