Difficult to accept

Hello everybody 

I am 53yrs old and i have a PM since April 17th. Before it I have been practicing sports regularly. I was running 30km/week. I had an HR of 36 at rest and never fainted. The doctor suggest to meet an aritmologist and after an Holter they found 11 pauses during the night the longest 5seconds. I had other exams like ecodopller and stress test and everything was regular. I stopped to run and make other activities and the pauses were reduced. However I did after 9 months another Holter and without exercising the pauses were back again (about 5 sec). They asked me to go through a Elettrofisiologic exam to measure the ability of the heart rato conduct the signal. The exam was perfect and they didn’t implant a PM but a loop recorder. After 3 weeks they recorded several pauses of 5 sec and one pause of 9 sec. They called me back to implant a PM.  Now I have a bicameral one and it is so difficult for me to accept it. I still believe that the  pauses were manageable by a different life style. I know that this is not rational way of thinking however I feel Like I was betrayed by my body that I have always tried to respect. Now I use to touch my left upper chest and I feel like I have something inside that is not part of me. It doesn’t hurt however  I feel it’s presence strongly when I am lifting something heavy.  So far it is set at 35HR and 30 during the night. I have the feeling that it is never pacing during the day but I am sure it works during the night. Sorry to share this “not positive” thoughts. I feel to be too “young” to have a PM. I really hope to write a next post with a more positive energy and I apologize in advance with others that have a more difficult situation than mine. I wish you all the best. 

Giuseppe 


9 Comments

moving on

by Tracey_E - 2018-07-30 19:31:54

It's hard to accept and it's ok to mourn, be angry, be in denial. But then we have to get over it and move on. You need it, stop trying to tell yourself otherwise. That's the first step to accepting. It's not realistic to think you can control your heart stopping. Not being active isn't a good choice either, that will shorten both quality and quantity of life. 

Why set so low?  Just because you get by with a very low rate doesn't mean you wouldn't feel better with a more normal rate. I would be willing to bet your running would improve. You'd have double the oxygen, think about it what that could mean for your stamina.  My rate was in the 40's then dropped to the 30's and finally 20's the day I got the pacer. It's been in the 70's since and at first it was like mainlining coffee, like suddenly turning on the lights when I'd been in the dark. I had no idea how bad I felt before until I had something to compare it to. 

Not passing out means nothing. You could pass out and not wake up. You could pass out while driving, we've had members that happened to. That's too late, the time to fix it is before you pass out.

Chuckling at your too young comment. I'm 51 now, but on my 5th pacer. I got my first one in 1994. Everything's relative. Many members here are younger than you. 

Electrical problems happen at random in otherwise healthy people. Exercise keeps the heart muscle strong, eating well keeps the arteries clear. That's all unrelated to electrical problems. They just happen. 

Understand

by Ding - 2018-07-30 20:10:31

I've just joined this minute, because I'm not surrounded by people who understand so I just wanted to let you know I completely understand where your coming from, it doesn't help to think maybe there was an alternative but it's understandable i did all that thinking before the implant and researched enough to know it's random electrics stuff not related to live style, it's just that they can fix it. Believe me I grilled my consult so much he finally sent me an email typed in large red capital letters that the pacemaker was 100% necessary and I only had 3.3second pauses. I think the on!y other options were coughing through the missed beats etc but I wasn't will to risk getting that right ! I feel safer now but at the moment, one week on I don't feel better yet, I came in to ask a few questions about that.

Ding, safe vs feeling better

by Tracey_E - 2018-07-30 22:20:59

If you were having pauses and no symptoms, and your rate wasn't low, it's possible you won't feel any different. That can make it even harder to accept! But it doesn't make it less necessary. Electrical problems don't fix themselves, they only get worse over time, and there are no medications to fix it. 

A pacemaker is much better than being dead

by AgentX86 - 2018-07-30 22:56:48

Those really are your choices.  A 9-second pause is a direct path to the undertaker.  Maybe not this week or this month but it will only get worse.  ...and no, you can't manage pauses with diet or lifestyle.  I suppose being paced is a lifestyle (it has the word "life" in it).

Perhaps we've all been betrayed by our bodies but a pacemaker is our way of sticking a finger in fate's eye. Not only can we live longer but also living better.

Agreed

by Ding - 2018-07-31 05:13:02

Yep, agreed a pacemaker was the only way forward, but at the moment I'm not feeling that great. I did have symptoms around 4o beats per min plus 3.3 sec pauses.. I think the problem with me is my mind set, I was sooooo positive after open heart surgery 2.5 years ago and that stayed with me until the day I had my pacemaker fitted, now I feel Flat, fatigued and get a bit manic! However coming on this support group has made me see that these feelings are common, so that helps.

Building on the positives

by Laurie Stone - 2018-07-31 05:29:24

I had my PM fitted 3 weeks ago. As a former marathoner, my resting HR slowed to 30bpm over the last decade. Training hard it maxed out at 100 - 105. I felt fit and fine. when I had a check up 2 months ago my resting pulse was 24bpm at which point I was referred to a cardiologist. He said the same thing - although I've never felt faint it could happen at any time creating a potentially lethal situation (while driving, MTB'ing etc) and recommended a PM. My resting pulse is set at 45 and I can now get my training pulse to 140-145 and feel great! I am building on these positives and know I'll perform better with my new electrical system.

So Zeb, be positive and and decide to use your PM to it's fullest, as Tracey says, you will most probably improve your running.

Good luck

 

Thank you all

by Zeb - 2018-08-01 03:31:26

Dear All, thank you for your support and for the useful and experienced advises. You are right I need to convince myself that it wasn’t an option. The only option was to accept to bet every night and sleep with the uncertainess to get up the day after.... and indeed this is not a valid option. I need to stop to complain with life and with myself because at the end there are no reasons to complain but to enjoy instead. 

I am leaving for two weeks and I will be on the Dolomites and I hope no ....I commit to spend time to overcome my limits by thinking that there was a different option. I really thank you all for your comments. I have been reading without posting for more than a month because I didn’t want to post complains and I though it was useless.  I definitively underestimated the power of WE; thank you thank you all.

I will post some pictures from the Dolomites on my profile to share with you. 

I wish you all the Best. 

G

53 and 1st Pacer

by Sparty87 - 2018-08-02 21:19:18

Just had my first Pacer installed on 7/18/18. Good to know there’s a forum out here with relevant info. Feeling less anxious already.  I’ve had anxiety issues in the past but had mostly put those behind me.  The surgery/ install has stirred up these feelings again....but then I wonder if it’s my body getting used to Pacer???  Vicious cycle... 😂😂🤔🤔

Does anyone recall getting a bit dizzy/spacey feeling after light exercise in the early post-op days?  First several weeks or months??

Thanks for any feedback.

 

It gets better

by karinirene - 2018-08-03 09:12:18

Hi,

I'm 41 years old woman and I just got my third pacemaker as well as third pair of leads.

When I got the first one I was 24 years old. I was so depressed, I really thought this was for older people. I saw the brochure they gave me and everyone there was so old. I felt betrayed, sad, frustrated. Everywhere I go I was met by people who felt pity towards me (I still do).

After a while, you wont feel your PM anymore. Life gets better, and you will tend to forget you have a PM in you. You won't even see the scar. After a while, I could do everything I did beforehand.

I just got my third PM and leads 3 weeks ago, it still hurts, ImIguessing because they really tried to get the previous leads out withoit any lick. I look at my new scar and it is abput 2 cm longer than the previous one but I think it won't be noticiable in a couple of months.

Hang in there, it will get better and it will feel like a paet of you. It could take a while but you will get there.

You know you're wired when...

Muggers want your ICD, not your wallet.

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