New Member Intro: Hi I'm Amanda

Wow. Ten days ago I had never really heard of ICD's or pacemakers and now I feel like I'm my way to becoming somewhat of a newbie expert. I am 43 - was born with a congenital heart defect (transposition of the great vessels) and had the Mustard procedure for it as a baby. Since then I have done well and then in late October I felt like I was getting a bad cold. Took myself to emergency and they did chest x-ray and ECG and then told me I was likely just had a virus and sent me home. A day later a cardiologist has looked at my ECG and wanted me to come back. Turned out I had a total block and was in heart failure. After a lot of waiting around and cancelled pacemaker surgery (due to what they called scheduling problems and budget cuts (Canada ; ) I was implanted with a ICD on December 8. While in hospital my heart was all over the place and they weren't sure of the cause so they decided to do that to play it safe.

I am now one week post-op and still super super sore and tender. As i am quite slight they put it under the muscle and wow it hurts right now.

I am happy to now the issue and be on the mend I'm just now learning pacemakers aren't just for older people. I was very active before this and am hoping to be able to run and do all my stuff again.

Onwards and upwards. Nice to know the support is here and any newbie advice will be well received. I'm still a bit in shock about the 'new me' but was happy to hear there was a solution.

All the best and happy to be part of the community.

Amanda

9 Comments

Welcome from another newbie

by CEGrundler - 2015-12-17 03:12:06

Hi Amanda, and welcome. Like you, I'm only a week into this, and being a petite woman, my pacemaker went under the muscle and I'm aching a bit. I'd had random syncope episodes since childhood, but it seems what I'd thought was a bad cold two summers ago did more damage to an already questionable electrical system. From that point on things continued downhill, and the pacemaker's been like a second lease on life, well worth every bit of moderate discomfort I'm riding out now. Feeling Sparky pacing right now, having known what it felt like without that reassuring steady beat there when I needed it, makes me grateful this technology exists.

I doubt most everyone here ever expected they'd be part of this club, but I'm certainly glad I am. Oh, and I've got the most bitchin' scar to show for it. That's even better than a badge or a secret handshake!

Its early days

by PhilPace - 2015-12-17 03:12:26

As TheKnotguy said it happen a lot. I took a walk one day and couldn't get 1/4 mile from my house. Called the Dr and the next day got a pacemaker. Give yourself some time to recover and get used to the idea. You may have had scheduling problems in Canada but I got a bill for $78,000.
Welcome to the club

Welcome to the club

by Theknotguy - 2015-12-17 03:12:52

Welcome to the club. A lot of us woke up one day and found out we needed a pacemaker so your shock is quite normal.

If you have questions please feel free to come back. We have a lot of members with a lot of experience and knowledge.

Hope everything continues to go well for you.

new member

by pgbcon - 2015-12-18 01:12:19

Was having a colonoscopy was interrupted by the fire dept arriving took me to the emergency and I am now a member. All that prep to no avail, kudos to our fire dept

Thank you

by Bee bee - 2015-12-18 02:12:42

Thanks so much for all the well wishes. Everyday is a little less uncomfortable and painful.

It's great that everyone is so supportive and I agree a positive attitude makes a big difference. I kind of had to laugh when this all happened because I'm also a holistic nutritionist and I've also eaten super healthy but an electrical problem can really be helped by nutrition.... the irony.

Have a great day.

welcome

by fontanamen5 - 2015-12-19 09:12:14

Welcome Amanda. I as well was born with a defect. I am 47 and on my 3rd PM. I had a VSD repair as a baby and my first PM at age 23. I have a complete AV block and am doing well with the pacemakers. I too (most everyone) was sore after the implant. It goes away; but everyone is different on how long you are sore. My PM is on the right side due to blocked veins on the left side of the chest area. this site is great. you can learn alot from reading other peoples comments and questions. again, welcome.

melinda

sorry about that

by WendyLaubach - 2015-12-21 01:12:26

Newbie here--I was trying to post that as an original post, not a comment!

Just got mine too

by Wisegal - 2015-12-21 04:12:19

Hi Amanda. I am also in Canada (Ontario). I'm age 67. I was also born with a CHD - Eisenmenger's Syndrome. Because of my age it is uncorrected - heart lung machine wasn't developed until I was 10). I had a pacemaker put in on November 16, 2015. I had been trying to get out of country travel insurance, and when I e-mailed my card. with some questions she got out my chart. She found a holter monitor test that had been filed before she saw it. I soon had a call that I had some arrhythmias, and she had me in the hospital for a PM within a few days. Mine is an epicardial PM, which is a lot more invasive (being placed on the heart), and it set off some Atrial Flutter - so now I am on a blood thinner. I went home, but unbeknown to me I went back into flutter, and I just couldn't get better, When I contacted her she again ordered me back to the hospital that day. The next day the did a cardioversion, and I felt terrific after that. But .... they then they wanted to get me regulated on an anti-arrhythmia drug, and then I had a problem with fluid retention. After an additional 10 days in hospital they sent me home, and I am slowly recuperating! Apparently the PM is working 10% of the time. Just thought you would like to meet another Canadian CHD person ...

Still figuring out what happened!

by WendyLaubach - 2015-12-21 12:12:08

I've never had any symptoms or anything odd on an ECG. I had a normal ECG at an annual checkup in early November 2015. My regular doc wanted to put me, at age 59, on a weight loss and exercise program, but I guess he worried about my excess weight and insisted on a 24-hour Holter monitor before he'd let me really exert myself. I wore the monitor for 24 hours, mailed it in for analysis, and a few days later got a frantic call from the head of the cardiology practice saying come see me this instant and pack a bag. Your heart stops all the time. While you're asleep it stops for a few seconds at a time, but didn't you notice at 11:30 in the morning last week when it stopped for 10 seconds? Uh, no, I didn't even feel faint, yet I was wide awake at the time. Anyway, they slapped a pacemaker in me the next morning.

The installation was surprisingly non-painful. The only mild discomfort I feel after 3 days is when I lean way over to pick lettuce; it's a faint achiness sort of in my throat, really weird. Is that my imagination, or can you feel something from where the lead snaked through the veins and went into the heart? I guess I'll call the doc tomorrow (Monday) and ask.

It's still a bit difficult to adjust to this, because I never felt anything, and I don't understand at all how my heart could have stopped for 10 seconds while I was awake without my noticing. I have a natural resting heart rate upon waking every morning of between 55 and 60, which I thought was fine. Apparently it also drops to 34 in the night, which is a little odd. My father also had bradycardia and a pacemaker, though in his case when he was almost 75. Well, what the heck, it seems unlikely to hurt me, and if my heart really was stopping, it's nice to know this will take care of it. But I still can't help wondering if it was all a terrible mistake.

Well, hey, I hit my deductible for the first time in my life, so insurance is actually paying for something, woo hoo.

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