How many of us are happy with our PMs?

I was just wondering what percentage of PM recipients might be more or less happy with the way their particular device performs?

This Club is a massively helpful hub for us all, especially those with tricky heart problems and those with issues with their PMs. The level of knowledgeable technical and emotional support on offer is superb.

One understandable consequence of this is that postings tend to be dominated by those with serious questions to ask about their own health, or the less than perfect performance they are getting from their devices. This is how it should be and I am not in any way agitating for change. However, I sometimes wonder what impression casual visitors to the site would get about what might await them should they ever be offered a PM themselves: there aren't that many success stories.

There used to be a poll panel on the right hand side asking members, essentially, whether their symptoms were satisfactorily controlled by their PM. I have looked for the results of this poll, hoping to find that overall satisfaction levels were higher than a quick scan of the forums might suggest, but failed. Could someone point me in the right direction, or otherwise enlighten me?

Thanks.

PS I imagine that this posting will be examined for any whiff of implied criticism of this site - really, there is none. The question I posed is as simple as it looks, I do not have any other agenda.


16 Comments

Success Stories has only recently been set up Repero

by Gemita - 2023-12-09 13:03:10

which is why it doesn't have too many posts, but I am hopeful we can all slowly add to this category in the coming months.  

I will answer your post fully a little later, but in the meantime I have found the Poll which I think might be of interest to you and have reinstated it.  You will see that 71% have noticed an improved quality of life after their pacemaker, with 29% not experiencing any improvement.  Total number of votes: 1473.  I don't know when the Poll was created or how long it ran for?  

There is another Poll that also asked a similar question: 1179 votes

Do you agree with this statement?  My device has improved my life? but giving members more options:  Strongly agree 64%,  Somewhat agree 23%, Somewhat disagree 8%, Strongly disagree 5%.  A similar result to the one above, wouldn't you say?  

Satisfied customers

by Lavender - 2023-12-09 15:17:03

I read this from an article:

Pacemakers are the most popular cardiac management devices on the market, with more than 1.5 million procedures performed in 2022.

Pacemakers are very common. I found this site because I didn't have anyone that I could talk to about it. I was uncomfortable at first both mentally and physically. My next door neighbor had one so I went and asked him about it. He said he never thinks about, has never had pain or any issues. So he couldn't answer my questions.  Lol

I think that the majority of folks who get pacemakers have no big problem adjusting. Most of our posters here have issues that send them seeking help.  If over a million people get them yearly, you can see we don't have a million people here seeking support or advice. 

Like me, once I got my answers here and was fully comfortable with my CRT-P pacemaker, I stuck around to help those on the path behind me. I am happy with my device and very grateful for its consistency and life saving technology. My pacemaker fixed my AV block.

Having problems with pacemaker adjustment is not the experience of the larger community of wearers. This is a soft place to land for people who need more info. 

37 years with a pacemaker

by Good Dog - 2023-12-09 16:54:06

I hope that I have enough experience with having a pacemaker to provide a credible answer here. My grandfather had the same condition as me, but before pacemakers were invented. I remember visiting him back in the mid 1950's and he spent most of his life back then sick and in bed. When I went into complete heart block at the age of 38, I was also sick and in bed until I got my pacemaker (only for a day-and-a-half). My life immediately changed. I can say now that my life has been completely normal for the last 38 years. I mean; "completely normal". No medication and the ability to do anything a normal person (without a pacemaker) can do.  It doesn't get better than that! So yes.....I am happy with my pacemaker!!!

Happy with PM?

by piglet22 - 2023-12-09 17:23:32

There's not a lot of choice really.

One day your heart starts misbehaving. A century ago it would be game over.

Now, it's almost totally fixable.

As for the forum, I can tell you that here in the UK, with no other support, things would be dire.

If you get a bad health trust, you might go decades without knowing anything about your condition.

There is a considerable knowledge base here and you don't have to pay a load of money for a private consultation.

There are other forums, but this is by far the best for considered advice.

I won't name the other ones, but some are no better than tittle tattle swap shops.

Forum Posts

by Penguin - 2023-12-09 18:24:28

Hi Repero, 

I saw this post earlier this evening and decided to give it some thought before replying. 

I'm going to flip your comment and ask you to consider what a forum full of positivity which puts all negativity aside, would look like and what that would achieve for someone who is struggling with their device?

 I agree that some might be put off by negativity, but it's a bit like Amazon reviews.  Read too many that tell you a product is perfect and the review loses credibility.  More balanced reviews, which provide you with negative and positive points from different perspectives, allow you to pick out the bits that matter to you. This ultimately allows you to form a more 'rounded' opinion. 

It's important to take off the rose tinted glasses and the dark tinted lenses - both obscure a clear view. I value the good and the bad reviews, but value a balanced view most of all. 

I knew it would be dangerous to ask!

by Repero - 2023-12-09 19:07:48

Penguin - of course, a forum that was managed in any way with the aim of giving either a positive or negative picture would be absolutely useless.

I wasn't suggesting anything of the sort. I was simply observing that, in the nature of things, we see more unhappy than contented posts and I just wondered what, statistically, the true picture might be. Gemita has given some figures from which I conclude that about 70% of PM owners are pretty happy - that's all I wanted to know.

I thought I had made it clear that I wasn't being critical or trying to change things in any way. It was perhaps naïve of me to hope that I wouldn't be misunderstood.

Fair?

by Penguin - 2023-12-09 19:29:09

Hi Repero, 

I didn't misunderstand you, nor was it my intention to discredit you for your ponderings. I just wanted to consider what a forum would look like if we gave casual visitors an impression that is biased either way. 

You said, ' I sometimes wonder what impression casual visitors to the site would get about what might await them should they ever be offered a PM themselves: there aren't that many success stories.'

I agree that there aren't many success stories - although I agree that this is a shame as it is good to hear the success stories. Many are very moving and provide hope - and hope matters! 

70% sounds like a reasonable estimate, and I would say that this figure reflects a lot of the posts that I read on here.  Recently there have been a lot of posts with complicated problems and I think that the sheer number of these posts has been quite overwhelming.

My concern was the suggestion that people might be put off from posting or joining when they read posts which describe problems. That's why I considered what you had to say carefully. 

I thought my answer was fair, but will happily withdraw it if you wish? 

More than happy with my pacemaker !

by Gemita - 2023-12-10 05:30:13

Repero, clearly the majority of those who post here do so primarily to receive support and advice, not to report a success story.  I am often reminded members who do not experience pacing difficulties (the majority it would appear) are usually busy getting on with their lives and don't post very often.

I came to the Pacemaker Club in 2018 looking for answers for worsening tachycardia which seemed to increase during the first few months of being paced when I was still "healing".  Since those early days, I have become a successful responder to pacing, far more successful than I could ever have imagined.  

Before my pacemaker I was living in fear for the next arrhythmia episode because they caused such instability. I often had to seek urgent medical help and was a regular visitor to A&E.  I had intermittent episodes of syncope from the irregular, rapidly falling or increasing heart rate and blood pressure caused by my Atrial Fibrillation (AF) or other tachy arrhythmias.  My arrhythmias also caused shortness of breath, uncomfortable palpitations with chest pain, extreme fatigue, worsening instability, hypothermia and fear of having a stroke because my blood flow was so volatile. 

My quality of life was miserable especially if my symptoms occurred when I was in public places (on the London Underground for example) when I could not get to a place of safety quickly or lie down.  On one occasion I experienced multiple episodes of transient ischaemic like attacks when blood flow surged to my head and I kept losing consciousness.  The train was stopped and an ambulance was called.  That was the start of my arrhythmia journey.

My EP offered me three treatment choices:  

1. an ablation to help control my AF, at least in the short to medium term, since AF is not curable.

2. a pacemaker for my tachycardia/bradycardia syndrome + strong medication to control the high heart rates without fear of lowering the heart rate to a dangerously low level, because my pacemaker would be able to prevent a fall in heart rate below the set lower rate limit.

3. An AV Node ablation where they would ablate around the AV node, preventing the fast signals from the atria getting through to push my ventricles too fast.  I would then become totally pacemaker dependent.

I chose a pacemaker alone (2) because my EP felt the majority of my arrhythmias were being triggered by bradycardia.  He was correct.  Treat the bradycardia part of my Sick Sinus Syndrome and it could help reduce arrhythmia episodes.  Now instead of feeling an irregular, fibrillating heart beat, I feel a regular, strong one most of the time.  I am no longer afraid of getting symptomatic attacks of arrhythmias.  They are now well controlled on minimum medication. My blood flow is better, I sleep better, I feel better and best of all, I am having fewer arrhythmias!  A truly unexpected benefit from a pacemaker.

My quality of life was miserable before my pacemaker.  What an incredible device this has turned out to be.  

While not everyone will have the arrhythmia control success that I appear to have achieved with pacing, it is certainly an extra tool in the cupboard that may prove very effective for some of us with mainly “bradycardia induced arrhythmias”.  

Now Repero, I want to hear your success story?

One more thought

by piglet22 - 2023-12-10 07:11:14

A long time ago, but still in my memory, people, including my relatives, suffered from these mystery illnesses.

I can remember visiting my ill grandfather. Confined to bed was the catchall.

Now, we call it heart disease or cancer.

The pacemaker or any of its relatives are triumphs of research and development, the combination of technologies you've never heard of.

People must have had rhythm problems for millennia. No-one knew what it was, how it worked or how to cure it. Life must have been awful.

Once the electrical side of things was understood, brilliant minds could set about fixing things.

Early pacemakers must have been a collection of bits and pieces at the research stage, without all the things like microprocessors we take for granted. Now there's probably more processing power in a set of Xmas tree lights than an early heart device.

Am I grateful? Of course I am. A new lease of life. Thousands of pounds worth of technology, fitted for free, by skilled medics.

Is it perfect? Of course not, but it will do.

What really worries me is the aftersales service that seems to be feeling the squeeze, but that's another story.

Reply to Penguin and Gemita

by Repero - 2023-12-10 07:27:57

Penguin - No, I certainly don't want you to withdraw anything! I am perhaps being a bit oversensitive.

You wrote: "My concern was the suggestion that people might be put off from posting or joining when they read posts which describe problems. That's why I considered what you had to say carefully."

I wasn't meaning to suggest that anyone might be put off from joining the site, rather that they would not get a balanced view of how successful a PM implant might be. I fully understand the reasons for this imbalance in a site of this nature, and wouldn't want to change that. It did however raise the question in my own mind of what the statistical truth might be. I have my answer now.

Gemita - Yes, mine is an out and out success story (so far!). I am definitely one of the 70% happy bunnies. Reading the posts here, which I do regularly, I realise how lucky I have been compared to many. My issue, complete heart block, is relatively simple. There was no agonising over whether or not to accept a PM, it was the only solution. Once installed, it had a pretty simple job to do, just bypass the AV block. Once the rate-response mechanism was switched off, it has done this flawlessly. I am back to how I was and forget that I have this thing in my chest. I am very grateful for this miraculous technology and tell the same story to anyone who asks.

I think this 70% figure that you uncovered deserves to be better known. Would there be any scope for providing access to the poll results on the site?

I hope we all remain friends!

We are always friends here, although we may fall out occasionally like all families do

by Gemita - 2023-12-10 08:48:42

Repero, 

Members already have access to Poll results if they are logged on and look carefully down the list of Polls already run.  Go to Poll (if currently running under Who’s online), then to view results, past polls and choose the Poll you wish to see and then press Go.  Perhaps we should ideally locate past Polls in another area, say under Members Only and we may consider this as changes to the site are made?

I am not sure that there is much more that I can add or uncover from the Poll results I have already posted in this thread, like the Poll start date and for how long it ran?  Clearly the number of recipients who responded is reflected in those percentages and I see we have collected a few more responses since I put the Poll back up last night for you to see the results!

If you or any member wants to ask more questions on this or any other subject, we can always start a new Poll.  Tracey_E and I can set these up.  I am not sure if that answers your question?

Thanks

by Repero - 2023-12-10 18:39:01

Thanks for the instructions on how to access poll results. I didn't know that.

happy with pacing

by Tracey_E - 2023-12-11 10:33:44

I see Gemita changed the poll to the satisfaction one we ran a while back.

Unfortunately a site like this is going to be somewhat dominated by unhappy posts because those are the people looking for answers. The happy ones (for the most part) aren't looking for a support group.

I make it my mission to post active pictures in the gallery to balance out all of the hospital pics. The hospital is a few days, the rest of our lives we can be out being active. I like when the gallery reflects that. 

rambing now...

Some people are getting the pacer for safety so they may not feel better.

Some people just plain don't feel better.

Some people may feel better but they focus on the negative.

Some are happy with it and feeling great but don't talk about it. I think this is the greatest majority of recipients.

Then there are the ones who feel good and speak out. We added the Success Stories category a few months ago to highlight those. However, I haven't used it and it was my idea lol, so I guess it's no surprise it's not used much. I either get busy and forget to post, or post under general out of habit. My bad. 

In case I need to state the obvious, I'm happy with mine. 

Repero, No news is good news

by R2D2 - 2023-12-11 14:26:48

I think most would agree with me that when things are going along fine, people are content and go back to the business of living their lives. After my ICD implant, I was scared and confused so I asked a lot of questions. But from the time line of my posts, you can tell when I was feeling better because I didn't say much. Since my device shocked me last week, I'm back to feeling vulnerable and frightened and have all kinds of questions again. 

This is a support group, and if you're happy and contented, chances are you aren't hanging out online sharing your experiences,  you're living your life. 

That's my thoughts on it. Plus, the majority of people who leave reviews are not happy with their purchase, or are very happy. Unfortunately with these devices, there is enough negative mixed in with the positive that the general rating would be three stars for us pacemaker folks. The device doesn't heal us, it only helps manage the symptoms, but it also takes something from us in return.... our control. 

Happy with my pacemaker?

by Gotrhythm - 2023-12-11 15:34:33

Yesterday, in a lull in the rain between deluges, my little minature poodle and I took our walk under raggedy grey skies. Though it was only around 3:00 PM, it seemed like twilight. The light and the wet brought out the maroon, burgandy, purple, lavender in the fallen oak leaves--leaves that before the rain looked dusty brown and dull. Now, here and there, slender pinaok leaves, threaded the piles with old gold, as if Alladin's treasure had spilled out along the sidewalk.

The dog and I enjoyed the scent of moisture in the air. Being a dog, she undoubtedly could appreciate the richness more than I.

Was I happy with my pacemaker? Huh? No. I never gave it a thought.

All a pacemaker (properly adjusted) does is give you the ability to do the same things you could do anyway--if you didn't need a pacemaker. In my experience, happiness with one's pacemaker equates to enjoying life, while happily forgetting the pacemaker's existence most of the time.

Could I be happier with my pacemaker? I think so.I could walk around being consiously happy with my pacemaker--if it made me better looking. Smarter. Richer. More techno-savvy. Something I'm not already. But it doesn't.

No, I wouldn't say I'm happy with my pacemaker. I'm happy to go on walks with my dog. Rarely giving the pacemaker a thought.

I like GotRhythm's explanation

by PacedNRunning - 2023-12-15 15:05:49

I like when you said "if you didn't need a pacemaker" it gives yout he ability to do all the same things you coudl do anyway.  That is how my MD presented a pacemaker to me. It would allow me to continue to do all the things I did before except safer and feel better.  He did make it seem like a simple device that would work instantly correctly. I think for some it works instantly and others need adjustments to the device in order to work properly for our hearts. 

I would say a majority of PM recipents have no issues.  Those with issues or challenges will seek out information on sites like this.  I had some challenges in the beginning and thankfully I have a great EP team, I'm a very happy camper with my device.  I didn't say that the first 2 years. :) But I do now.!

You know you're wired when...

Your pacemaker interferes with your electronic scale.

Member Quotes

I am very lucky to have my device.