Need reassurance

Hi, I am 42 F and am due to have a pacemaker fitted in 3 weeks. I’ve always had a low HR, currently resting rate is 42-44 with dips to 35. Top end Hr can go above 200 when exercising. When it drops below 40 I sometimes feel dizzy, not always. I’ve fainted maybe 4 times in my life, usually when I am ill.

My Cardiologist thinks I need a pacemaker, but is a little concerned about my age. I am not convinced. I’ve never known any different so I can only see the negatives to having surgery, especially with small children at home. Is a low heart rate alone enough to need one? What will happen if I don’t? 


16 Comments

First Things

by CatDad - 2019-07-17 04:58:19

Knowing nothing else about your health profile but what you've stated above, my only comment is that maybe a PM will prevent you from fainting while driving your children somewhere or with something boiling on the stove.

Indications for pacing

by Selwyn - 2019-07-17 05:44:59

https://www.aafp.org/afp/2005/0415/p1563.html

Outlines the indications for pacing. Of note to yourself is the following :

'The decision to implant a pacemaker in a patient with abnormal AV conduction depends on the presence of symptoms related to bradycardia or ventricular arrhythmias and their prognostic implications. Observational studies over the years strongly suggest that permanent pacing improves survival in patients with complete AV block, especially if syncope has occurred. Therefore, symptomatic third-degree AV block is a class I indication for permanent pacing, whereas asymptomatic third-degree AV block is a class IIa indication. More recently, it has been recognized that type II second-degree AV block may be a precursor to complete AV block Type II second-degree AV block should be treated with a permanent pacemaker even in an asymptomatic patient, particularly if it is associated with fascicular block, which also is a class IIa recommendation.'

So, in basic English, this means that if you have symptoms, you have problems, and these may get worse with time. Clearly, having small children to care for is not a reason for not having a pacemaker, rather the reverse, as any sudden loss of conciousness whilst caring for your children could be catastrophic.  [ I knew a gentleman who fainted at the wheel of his car and was beheaded in the resultant road accident. Nice chap, a pharmacist].

Complete AV block is associated with cardiac arrest. One New Year, my colleague left a patient with complete AV block ( pulse 35 per minute) at home, as her family were due to visit, next day and  she refused admission so as to be with her family. When I visited her, she chose to have a cardiac arrest in front of me, and after CPR lived to tell the tale.... with a pacemaker, and thank you for the bottle of wine sent to me from her husband!

Why be concerned about your age, when the younger you are the more years you stand to loose in the event of your sudden death?

 

Same Boat

by Piggers365 - 2019-07-17 05:46:11

I'm in the same boat and due to have an ICD fitted in 24 hours time.I have not suffered any symptoms to date however my cardiologist recommended i have an ICD fitted due to a hereditary heart condition i have. 

Personally i think it’s a decision that needs to be made alone. As for taking advice there is no one more qualified than your doctor/ cardiologist. From all the research and advice i have taken (And i have taken a lot from multiple cardiologist's) the positives massively out way the negatives. As I’m sure you can tell from this forum these devices are fairly common practice in todays society and thousands of people have them evry year. I can only speak from someone who has very recently faced a similar decision to what your facing and in my opinion its important to listen to the experts and then make the decision you believe is right for you and your family.

Pacemaker?

by AgentX86 - 2019-07-17 08:57:47

First, your age has absolutely nothing to do with your decision. Newborns get pacemakers. It can be a matter of life and death. A unpopular the facts are, you're never too young to die. Harsh words but that's what you're facing. You get dizzy and have "only" fainted four times. Um, once is enough to kill (think stairs). I *sure* hope you're not driving until you get your pacemaker.

pacing

by Tracey_E - 2019-07-17 10:14:41

Putting it off due to age is one of my giant pet peeves. Age has nothing to do with the need for good circulation. Like you, my rate was in the low 40's all my life. I gradually got more symptomatic as I got out of my teens but my doctor wanted to wait because I was so young and I was happy to procrastinate because I was afraid of the surgery. So when I was in your position I did not get the pacer.

What happened to me when I put it off? I got more and more tired. I got dizzy more and more often. It got harder to work full time, to go out with my friends, to do much more than sit around. My brain got foggy. This all happened so gradually that I didn't even notice until I was looking back on it later. We write it off, tell ourselves work is stressful, I stayed up too late, always another excuse why I felt like crap. One day my rate tanked, it was 22 when I was admitted for emergency surgery. When your heart rate is 22, you are not making sound decisons. It's like being drunk. I thought my purple fingernails were funny and I drove myself to the hospital. My guardian angel was pulling some serious overtime that day, there is no other reason for me getting safely to the hospital. I could have died, and let me tell you emergency surgery is not the easy way to do it. I felt fantastic after getting the pacer and in hindsight I was more than a little resentful that my doctor let age be a factor in what can be a life or death decision. I wish my doctor had nudged me to get it at the first sign I couldn't do everything I wanted to do. I could have been thriving instead of struggling for those years. That was 25 years ago, I'm 52 now. 

Going from a rate in the 40''s to a normal rate was like night and day for me, felt like I'd been mainlining coffee. If we've never known any different, we have no idea what normal feels like. It feels pretty darned amazing! I do not get dizzy or pass out now. My ejection fraction (how they measure heart function and something often brought up as a potential downside to pacing) is as good as it ever was. I've never had a major complication and most of the time I forget it's there. There is nothing I want to do that I cannot. This morning I went to the gym (Crossfit) then came home and ran 2 miles. Life is good. 

Whether you feel it or not, it's hard on our organs when our rate is too low, they aren't getting the oxgyen they need. You are feeling it.  You have passed out. Just do it. It's nowhere near as bad as we build it up to be in our heads and I think you'll be surprised how good a normal resting rate can make you feel. 

Last thought, be careful reading too much, keep in mind people with rare complications go online looking for answers. For every one of them there are thousands out there getting on with their lives. The benefits far, far outweigh the negatives. 

My two cents

by doublehorn48 - 2019-07-17 10:53:35

Age has nothing to do with when to get a pacemaker.  If you need it, you need it.  I got my first one when I was 38.  I'm now 70.  I have to say I'm impressed with your high heart rate.  You must be in great shspe.  The pacemaker won't hurt you it will only help.

Reasons to not get a pacemaker--age isn't one

by Gotrhythm - 2019-07-17 14:20:50

I resisted getting a pacemaker with all my might. Now I realize my thinking was so disordered, it didn't occur to me that if I had a pacemaker, I would feel better. When I look back, I can see that I had probably needed it since I was, say ...your age. 

When I think of the years when life was sometimes such a struggle, the days when I was not the person I knew I was, when I could not do the things I knew I could do--well, dwelling on "if only" is a waste of time.

But as Tracey says, it comes on so gradually, you forget what normal is. I really didn't comprehend what a slow, irregular heartbeat had been doing to me until I woke up from the surgery feeling good. And suddely I remembered. "Oh, this is what feeling good feels like."

Being 42 ia no reason not to get a pacemaker if you need one. You don't want to live it at half speed, which is what you are doing now. And having young children at home is the best reason I can think of for getting a pacemaker. You need all the stamina you can get.

Thanks

by Teffri - 2019-07-17 15:19:43

I have been going to the doctor about feeling tired, not just tired but too exhausted to function normally, for 10 years. My GP at first said I had depression (I don’t), then that it was normal to be this tired with small children. It’s only now I’ve changed GP that the new one finally paid attention and sent me for a 24 hour tape. So I’ve lived with this for a long time. Probably my entire adult life. That’s why the idea of change is so scary, but the stories I have read here are reassuring.

good change

by Tracey_E - 2019-07-17 17:10:34

It's hard for us to take it seriously that something is really wrong when even our doctors write it off! That's all too common, point to the easy answer instead of digging deeper. I'm glad your doctor is taking it seriously now. Change is scary. The thought of our hearts getting help from a computer is scary. You know what is more scary? Your kids not having a mom, or getting seriously hurt next time you pass out, or your kids getting hurt because you were driving when you passed out. Not keeping up with your kids when there is a fix? That's completely unnecessary. 

If you have questions about the surgery, recovery, or living with a pacer, or just want to talk to someone who's been in your shoes, feel free to message me any time. I found the surgery easier than expected and after I felt better than I'd ever imagined. The anticipation was a million times worse than the reality. 

no worries

by dwelch - 2019-07-17 20:05:28

First off find a doc you trust then trust the doc you found.  If the doc says you need one then you need one.  If it is AV block (is that what you have?) that is very easy to see on an EKG and they can show you, doesnt need a 24 hour tape a 24 second capture will do it.

My complete block was found pre teen and my first pacer at 19, I am on number five.  No regrets at all.  I wouldnt be here, I would not have been able to raise a child, etc.

I didnt know what a normal heart felt like until after I got the first one.  And now I know I was doing a lot of activities pre-pacer that coulda/shoulda killed me.

You may no longer need to go from 40 to 200 with a properly working heart.  Not sure exactly what your condition is and its not our business unless you choose to share.  But as far as this community is concerned you are going to find that we are going to say yes do it.  Movies, tv shows and other places dont portray pacemakers properly.  Unless you are a welder or work on power lines it wont affect your life negatively, highly likely it will either make it better or save it.

So likely we are all in on this end you need to sit down with the doc, have them show you what their evidence is, how it falls into the category of needing one.  these days insurance wont just pay for one willy nilly so there must be some justification.  Unless you have them get the technical terms, bring them to us or google.

The stats have been erased essentially for my condition, the life expecancy was in the teens, now you look it up and due to pacemakers its a normal life expecancy.  Even if 90% with your issue live normaly without treatment do you want to be the 1 in 10?   

Do you put your kids in car seats and use seat belts even though the statistics of how many times you have been in the car and needed the belt vs the times you didnt, but you still put it on yes?  Still put your kids in a car seat yes?

There is nothing whatsoever about your age that would affect the decision of getting a pacer.

Pre op

by Teffri - 2019-07-19 12:42:35

I’ve just had my pre op and the nurse explained in a lot more detail what is going on and why I need this. I have sinus node dysfunction and during the 24 hour tape my heart slowed dangerously several times and stopped completely once for 2.5 seconds. So I accept that I need a pacemaker, as my heart is failing. Somehow that makes the operation seem even more scary. I’ve always been fit and never had any health issues before, no one in my family has heart problems. It seems to be an anomaly.

Pretty Op

by AgentX86 - 2019-07-19 13:24:55

Two-and-a-half seconds isn't alarming at all. I was doing several three second pauses a day and no one was worried. The Bradycardia can be a more immediate concern but they don't think that's an emergency either. The bottom line is that a pacemaker will fix you right up. That's why they were invented.

 

How worried should you be?

by Gotrhythm - 2019-07-19 14:02:29

It can be a real shock when, after a lifetime of thinking your heart is perfectly healthy,  it finally sinks in: wait a minute. I do have a problem. A serious problem. 

Here's a distinction you need to learn. Malfunctions of the heart's electrical system (what you have) are not the same thing as heart "disease." You can have one but not the other, or both.

Unlike heart disease, the cause of rythm problems, another name for electrical system issues, often can't be pinpointed. In most cases, it doesn't appear to be genetic. It isn't caused by diet or lifestyle. 

It's possible that your heart overall is perfectly healthy, and only the little bundle of cells that initiates the heartbeat, called the sinus node, has developed a glitch.

So, all factors being equal, if you must have a heart problem, sinus node disfunctions are the best ones to have. A pacemaker can take on the work of the sinus node, and you're back in business. No more worries that your heart might make an unscheduled stop. Once you have a pacemaker, your life expectancy becomes the same as anyone else's.

Despite the impression you might get by reading posts here, complications are rare. Most people get a pacemaker and once the incision is healed, never look back. They get on with their lives as if nothing is wrong, because, happily, nothing is.

do it

by Uelrindru - 2019-07-21 18:02:09

I had a heart attack at 38 about a week after, as they were setting me up to leave I had a vfib incident. my heart rate was 240 and after they got me back they said you're getting an ICD. it's been six months since then and it hasn't gone off at all, even if it NEVER goes off the peace of mind it gives me was worth the experience. You will actually use it and feel better so there no potential downside for you, just dont pull start any generators :)

generators

by Tracey_E - 2019-07-21 22:11:03

We can start a generator! Just don't linger. I live in hurricane territory and have run our generator multiple times. I've also jumpstarted cars. Rule of thumb is keep the device 6" from anything questionable.  

mine must be different

by Uelrindru - 2019-07-25 16:26:08

the documentation for my ICD says 2 feet from a running generator and never start one because the field is greater when it first starts. I actually think it cautions away 2 feet from high voltage motors in general, so small generator to car motor, I really need to ask about 240v devices. Every device is different and I'm sort of jealous, I want to get near them.

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I'm 43 and have had my pacemaker four weeks today. I'm looking forward to living another 50 years and this marvelous device inside me will help me do that.