feeling "normal"

Of course you're scared

by Grateful Heart - 2017-06-03 00:21:35

Very normal.  It takes time....but you will get there.  I was 52 yrs old when I got my device too.  Like you, it was a shock.  I thought they must be wrong so I went for a 2nd opinion....that doctor confirmed they were right.

You will become positive.  Keep your plans for a long, happy, full life.  I've had my device for 8 1/2 years. 

None of us wanted a device.  I have found learning about your device and condition helps in acceptance.  You can then teach your family and friends about it and that will help ease their mind too.  Trust me, my family is informed now and doesn't even think about it...lol. 

You've taken care of your family all these years, let them take care of you for a little bit.  Enjoy it while you can.  :)  They need to feel they are helping (and they are).  You'll be back to normal in no time.

You can talk and ask your questions here or feel free to private message me through this site if you like.  All of your new feelings and concerns and normal.    

Welcome to the club nobody wanted to join, but these devices are truly life savers. 

Grateful Heart 

Pacemakers and worry for Cindys

by AddieJ - 2017-06-03 01:13:44

Well, I've had mine for well over a year.  Single lead for bradycardia and SSS. I feel better in that I don't almost pass out anymore, but dizzy and weak at odd times. I can run five miles some days, and others not.  I can ride my bike for miles and then can't make it up a flight of stairs at work.  I envy people here who are doing just great.  I wonder if I'll ever be doing great.  I am dizzy a lot.  I fear that something else needs to be done.  My doctor says I need another lead but I wimped out on that once because of all the trouble I had breathing after the single lead was inserted. My doctor didn't believe me when I said I couldn't breathe, but it got a lot better after a few really scary depressing months.  Now it's just the weak and dizzy spells.  Makes me feel vulnerable and worried. 

Addiej

back to our lives

by Tracey_E - 2017-06-03 09:17:15

Most of us heal and get back to our lives with no limitations. Sometimes it's hard to see that that day will come, esp when it's all new and scary. Take time to heal, take time to mourn, then go play tennis or run. Until you can run again, go walk. Just get out in the fresh air and get moving, it's the best medicine.

I've learned to be grateful that my problem has a fix, and to see the pacer as the tool to living a full, active life. I've never once had a doctor tell me this will shorten my life. With av block, our sinus node works normally but the signal doesn't always get to the ventricles. When it does not, the pacer steps in and gives the ventricles a kick in the pants to keep up. If we have to have a heart condition, we have the one with the easiest fix because our sinus node is still setting the pace, all the pacer does is complete the broken circuit. 

My heart block is congenital, and it's 3rd degree which means the signal never gets through so I pace every beat. I am 2 years younger than you and on my 5th device. I hike or ski every vacation, do Crossfit 5 monrnings a week (ok, 3 this week, I overslept on Memorial Day and was on a business trip yesterday but I'll bike today to make up for it), went kayaking last week and have plans to do a ropes/zip course with the same group of friends next week.  When I'd had my pacer for 20 years, I wanted to do something hard, something that I never thought I could do, to celebrate. I grabbed my oldest daughter (high school at the time) and we did our first 5k. Then she convinced me to try a 10K and in Feb we did our first half.  She's off at college now and that's become our thing, meet for girls weekends with a race. We have members here that do fulls, ultras, triathlons, you name it. You may find that your running stamina is better than ever.

Something to keep in mind, it's not uncommon to need the settings fine tuned to meet our lifestyle needs. The pacer can only get the ventricles up to the upper limit.  They don't like to have it any higher than we need, so often active patients find that the initial setting (120-130) isn't enough.  When you go for your first check, ask what your upper limit is. If it's lower than you know you get when you run, ask them to turn it up. Or, if you are running and suddenly feel too winded, that's a sign it needs turned up. Easy fix, but it can be scary when it happens if you don't know what it is. 

Addie

by Grateful Heart - 2017-06-03 09:28:06

According to your doctor, something else does need to be done....a second lead.  I understand your hesitation but it sounds like that is the fix.  Get a 2nd opinion if you are not sure.

Shortly after I received my device, my now former Cardio didn't believe me when I had pain in the center of my chest.  He put me in the hospital, ran all kinds of tests and sent me home 3 days later with no explanation.  Of all the tests, he never ordered an Echo.  I went to a another Cardio who did an Echo which revealed fluid around my heart.  A rare by-product from the initial surgery.

I have other stories I could tell with device or lead problems but I'll just skip to now.  After more than 8 years, I still get short of breath when walking up hills or climbing stairs.  But...at the gym, I can exercise without a problem...kind of like what you are experiencing.  I know there's a setting in there somewhere that will fix it but I don't want it to throw off my ablility to exercise normally.  So my HR goes up when I need it to except on inclines.  I have mentioned it in the past with no response so now I don't complain about it to the doctors and just deal with it.  But that's just me....that may not work for you.  

That 2nd lead may make a huge difference for you.  You've gone this far, get the 2nd opinion and get it fixed.  Do your research and advocate for yourself.  If your doctor doesn't believe you....find one who will.  BTDT       

Grateful Heart    

The "New Normal"

by Shaun - 2017-06-03 11:27:16

t takes a while to adust to having a pacemaker, and it's early days yet for you but eventually things do get back to normal. That is not to say they get back to how they were beforehand, there's new sensations you never had before (in my case discomfort led down some nights, ocassional aching shoulder, intermittent breathlessness / coughing, light headedness and ocassional anxiety), but after a while these become the "new normal".

I received my pacemaker nearly 3 years ago at the age of 53 and it did not stop me from cycling, in fact I can still get to tops of the hills faster than some of my cycling companions 18 years my junior, yet walking up a single flight of stairs can leave me breathless. This used to worry me when I first received my pacemaker but after nearly 3 years I now know this is the "new normal" for me and there are simple things I can do to alleviate the symptoms such as stopping talking and taking a few deep breaths.

The doctors can fix you up but only you can start believing that you will live to 103 agian and that will take a little while.