How your pacemaker has affected their lives in positive or negative ways?
Hi Rajusharma - could you specify what area of information you're looking for? One can find a lot of info using the seach function on this site, if you're looking for a particular topic. If I understand correctly, you have a PM already. What negatives are you concerned about?
Rajusharma wrote to me privately asking this question and I thought it was an interesting question to ask members of the Club generally. I understood the question to be:
How has your pacemaker affected you? Has it affected you positively or negatively? All comments will be helpful
I want to praise and support my pacemaker. It has given me more energy by keeping my heart rate steady and beating at a higher rate. Before my pacemaker my heart rate kept falling below 30 bpm at night and below 45 bpm during the day. At these heart rates I couldn't sleep well at night or move around safely during the day because I kept feeling unstable and faint. I fainted several times during the day on exertion with a heart beat around 40 bpm. I needed a higher heart rate to feel well. Now with a pacemaker set at 70 bpm day and night, my sleep has improved immensely and my daily activities are no longer a struggle, the pausing, lower heart rates are controlled by my pacemaker and what a difference it has made to my quality of life. I am more productive during the day, less tired, less cold with the higher heart rates. It is an incredible improvement.
Even after 3 years I can still feel my device at times and it can be a little uncomfortable, but I have learnt how to avoid positions which might cause this discomfort.
What is your situation Rajusharma? Are you happy with your device?
I've been incredibly lucky. After 4 cardiologists who didn't measure up I found one who really listened and fitted me with the best PM in the world for a keen road cyclist with SSS+CI - and got it tuned for me.
My path - so far - has been very easy, and contributing here has really shown me *just* how fortunate I've been.
Never forget that for a lot of PM patients all goes well and they never feel the need to search out a forum like this to vent or ask for help. I was chatting to someone yesterday who is 10months post-PM and very happy that they are 'cured' - not so happy about the injuries caused by the falls that were due to cardiac pauses, but had no need to search for this forum.
Thanks to my pacemaker I am more active and not short of breath with minimal activity. I can actually run for enjoyment, and just finished a 10 K with my best time ever. I have been able to lose 50 pounds.
The negatives: I had a great deal of pain after implant, that lasted a year, and now after 2 1/2 years I still feel it and it burns and aches at times. It is quite visible, and if I was younger, I would likely be more self-concious about it. I also have scarring (stenosis) around the wires in my subclavian vein, so one arm is slightly swollen and discolored, and I have visible veins around my pacer.
There is also the ongoing expense of quarterly pacer checks which cost $150 per visit.
I feel my pacemaker was a gamechanger for me. I spent some time over two years prior to the implant feeling progressively awful as the result of sick sinus syndrome which involved both symptomatic bradycardia and tachycardia. Besides being physically exhausted and hampered in carrying out normal activities, I felt as though I was sliding down the rabbit hole into dementia at times as I struggled to hold onto a thought or carry out tasks requiring any degree of mental acuity.
Despite this, I still thought things weren't bad enough for me to need a pacemaker- guess I thought I needed to pass out a few times first ( though I did come close on a couple occasions.) But I got it, and what a difference!
Once the adjustments were made at my 6 week post-pacer check ( ie, rate response turned on, lower limit set to 55, and whatever else) I noticed a big jump in my energy level, and even my mental acuity. It's gotten even better over the two years have had it, and while this may sound wierd, I sometimes give the pacer, the universe, my involved health care providers a mental thumbs up when I see my heart rate going into the 70's and 80's with normal everyday activities instead of topping out in the low 50's max, and the energy to do these things. And I guess the pacemaker is doing its share here, as my latest pacemaker check showed an atrial pacing rate of 94%.
And with the pacemaker, I can take enough medication to keep the tachycardia more or less at bay, which is a good thing because those tachys now include some afib.
I'm also more grateful than I can say for the vigilance of my cardiology team, and the remote monitoring capability of the pacemaker and monitor, which makes that vigilance possible. A monitor alert they received some time ago informed them that I had been in afib for a number of hours, and the decision was made for me to start anticoagulation, so a prescription for Eliquis. Hopefully that's some major stroke prevention there
The placement of my pacemaker is about as optimum as it can be, not inthe way of anything, and only a slight lump, and a fading scar can be seen
All in all, maybe there aren't any downsides to this.
Upside: I have lived 10 more years than I would have without it. And they have been good years--not crippled in any way by my heart condition because I have a pacemaker.
Downside: When you put being alive and able to participate in life fully on one side of the scales, what downsides there are seem fairly insignificant, mostly a matter personal values. My life has been significantly better in many respects than it was pre-pacemaker, and in no way worse.
There's just one thing, neither downside nor upside, just a fact. Pacemakers, miracles of modern technology that they are, are still machines. They aren't living, growing, self-repairing tissue. They provide a facsimile of a natural heartbeat, but lack the responsiveness and subtlety. Without you thinking about it, the normal heart speeds up, slows down as needed all day. A pacemaker speeds up and slows down depending on how it is programmed.
Many people walk around with pacemakers not feeling much better than they did before because the settings on their pacemaker have never been adjusted to their particular needs and life styles.
So one downside, if you want to call it that, is that you are dependent upon tthe knowledge, skill, and communication ability of technologists to get your best quality of life from your pacemaker.
Number one positive, I would have died the day I got it otherwise. It's all uphill from there. My heart rate was 22 when I was admitted for emergency surgery. If I'd been born the same year as my mom, before pacing technology, I never would have seen my 30th birthday.
That was 1994. I went from tired and dizzy all the time to feeling great. There have been some bumps in the road but no major complications. I consider it a blessing, 100%.
One negative, I currently have back and shoulder problems, both would be easier to deal with if I could have an mri, but we are working around it.
Thanks for your message, Gemita - sorry I didn't see it until just now, and it was helpful for Rajusharma to post this request for information. In my personal situation, everything was clearer - vision, taste, mental acuity - you name it, as soon as I had the implant, even though there was some initial discomfort, and then of course there's the medical maintenance and follow up / tweaking. So virtually all positives with some minor inconveniences.
I would be dead now, I would have been dead a long time ago. I should have died before I got the pacer I didnt realize the risks I was taking as a teenager being so active. My doctor told me once, people with your condition have died doing a stunt like that (I rode a 50 mile bike ride out of the blue, I was a bmxer not a road racer, the bmx should have killed me too). I simply stopped telling the doctor what I was up to rather than stop doing things, I was a teenager.
I have so far more than doubled my life. I got to have a child. Got to raise a child to adulthood. Was able to help others and make a difference in their lives.
As Tracey_E will attest to as she came pretty close, folks with CCHB, didnt usually make it past their teenage years (active or not) before pacemakers. Heart block is trivial to fix with a pacer and the stats are completely reversed, keep and maintain your pacer and you will die of something else instead.
The occasional new pacer (I am on number 5), the annual checkups, occasionally bumping it on something, all insignificant compared to not being dead. I see no real negatives.
You know you're wired when...
You participate in the Pacer Olympics.
I, too, am feeling tons better since my implant.