So that's it...

You're not broken

by Grateful Heart - 2018-06-19 21:10:44

Some people need eye glasses to see better.  Some need a hearing aid to hear better.  We need help with our hearts...and we are very lucky there is a fix for us.  Many are not so lucky.

It's normal to be scared and angry at first.  It is a shocker...no pun intended. 

It's ok to go through many emotions, even mourn the loss and feel that your heart has failed you.  Then learn all you can about your condition and device and acceptance will come.  Knowledge is power!

None of us wanted a device but I am so grateful we have these devices to give us a longer life with our families. 

It's a process and you will get through this....we all have.  

Grateful Heart

Wow! So much here.

by AgentX86 - 2018-06-19 23:27:34

First of all, it's not the end of the world.  AF is a PITA, to be sure, but I've survived a particularly symptomatic case of Afib, turned into Aflutter by a Maze procedure.  The subsequent (rhythm control) drugs left me with SSS and Tachy-Brady and long pauses (so an AV ablation and PM).

WPW does throw in a wrinkle.  AIUI, the usual treatment for WPW is an ablation, which you didn't mention.  Since they're talking about beta blockers, it seems they're going to use rate control, which will leave you in AF but bring the heart rate down to a safe level.  The pacemaker won't do anything for AF but will treat the SSS. 

As I said, this isn't the end of the world.  These procedures are pretty simple and nothing to be terrified of.  I suggest that in addition to pacemakerclub, you start reading stopafib.org.  Lots of great information (and people) over there, too.

They say a fixed broken spot is twice as strong...

by Shewil - 2018-06-20 04:58:15

We’ve all got something sugar. I’m new to all of this myself. It’s scary stuff for sure. 

However, around your age I had already (27) been diagnosed with an awful autoimmune disease, I was told I would be in a wheelchair by the time I was 40. At 32, I was diagnosed with two different types of cancer. The list somehow continues to grow. Yes, keep good records something I regret.

I’m gonna be 47 next month I do use I rolling walker, but I’m walking. My point of all of this isn’t to say I have more or less to deal with than you but rather, don’t forget to live honey. This doesn’t define you! You make life what you want it to be.

You’re so young!! Get used to this comment because you’re probably going to hear it a lot!

Sheila

you wont be the same...

by dwelch - 2018-06-20 09:39:09

...you will be better...

You will be the bionic hiker girl instead of just hiker girl...

I was 19 when I got my first device, I am on number 5.  Very happy it is there, I definitely would not have lived this long, no way.  Even making it to 19 was a stretch.  Far better to still be around wishing you didnt have to have this device, than...not being around.   Another way to look at this is you could still be around but have to give up hiking and sit on a couch all day not stressing your heart/body.   It is very much worth it.

There will be moments of anxiety through the process and beyond as you get into the rythm of visits once or twice a year, dealing with the box they give you to take home that can talk to the device, etc.  Just like hiking and being active makes you stronger physically, working through this anxiety and having a coping mechanism makes you stronger mentally, makes you that much better in dealing with other challenges life brings. 

I dont know the statistics for this site some percentage are folks just about to get or just got their device, others are folks with devices that believe in them and know they are life changing, that you can be normal now or again.  There is a wealth of knowledge and experience here, there is that percentage of us here that have been through this, some like me having had multiple devices.

My bottom line though is do you trust your doc, if not get another, but if you trust your doc, then you need to let them do their job and work with them on that, including getting a device if they say you need to go down that path.  

attitude counts

by Tracey_E - 2018-06-20 12:05:21

It's ok to be sad, to be resentful, to mourn, to be angry. But then we need to choose to look on the bright side and move on. I was 27 when I got my first pacer. I thought it would be the end of the world. Turns out it wasn't, it was just the beginning of a new chapter and that new chapter had a lot more benefits than challenges. I know it probably doesn't seem like it now, but I rarely think about it, it rarely inconveniences me. It for sure doesn't hold me back. I lead an active, healthy life.  You will too. It may be a little different from what you expected or that of your friends, but it can still be happy and full. We aren't defined by our hearts, don't give a little hunk of titanium that much power. 

same roller coaster; different day

by Washingtonienne - 2018-06-20 23:53:40

dwelch said exactly what I thought when I read your post - You will never be the same again - You'll be so much BETTER!  Seriously, I hope I never again feel like I did before my pacer.  That was shit compared to how well I feel now.  

The rollercoaster of emotions you are experiencing is completely normal.  I was 34 when I got my pacer and the days in between my EP telling me it was necessary and my first day back at work were hell.  I was defeated, mad at my body for failing me, mad at my parents for not seeking solutions ages ago when I first felt symptoms, scared of the procedure, embarassed, resentful for all I had missed, etc.  There was so much nervous and angry cleaning - my house has never been so spotless!  But now I just feel alive...it's effing great. 

Be brave, know that you have this group cheering you on.  It really does get better.  You'll get there, I promise.  

Still adjusting

by First time user - 2018-06-21 10:08:29

I just got my pacemaker  on Monday  June  18th. I'm trying to adjust to healing,  and soreness  and limitations  to my arm for the next few weeks . But everyone  has been  super supportive. Just make sure you have a support network that you can talk to and can help  you out

What exactly is broken?

by Gotrhythm - 2018-06-21 15:11:04

What everyone has already said about how it's your choice what you make of having a pacemaker is right on. But you know what struck me when I read your post?  "My dad was 42 when he got his first device."

For many of us, the very idea of a pacemaker comes as a complete surprise, a shock. The possibility of needing one either now or someday never crossed our minds. We start our journey knowing practically zero about pacemakers, how they work, what to expect, what limitations we might face, how to navigate the medical system... Etc.

We come to Pacemaker Club looking for someone, anyone, who has a pacemaker and can relate to our experience. But you do know someone. Someone close. You've had a lot of time to think about what having a pacemaker means.

I might be totally off base, but I'm wondering what you learned from your dad's life, consciously or unconsciously, to make you conclude that having a heart condtion and needing a pacemaker means you're "broken." At the risk of stating the obvious, you are not your father. His experience is not the same as your experience.

Nobody wants to find out they need a pacemaker. I'm sure everyone here sympathizes. Still, having a pacemaker means you will live out a normal life expectancy. Since you're 33, that's going to be a long time. You'll be surprised by how many people who are not "broken" (by your defintion) that you will out live.

Than you again :)

by Hiker Girl - 2018-06-21 21:14:24

Thank you all for your kind/comforting messages.

Really helps to read you all! 

Glad I found this group, it's awesome :)

they are awesome

by Rookie - 2018-07-20 18:11:35

Hi Hiker Girl,

I hike at least five times a week to keep our two huskies from eating the couch so was a little pissed to have to have a PM.

I am day four of my first PM for Bradycardia and am adjusting? It kind of grosses me out that I have something foreign shoved in to my heart because I am about as squeamish as it gets BUT I have to admit that most of the time ALREADY I am thinking OH YEAH I have to remember i have this in here. I really can see that in the not too distant future I am going to just forget it's there.

This group helped me calm the hell down before I even had a surgery date just by reading what they had to say to others. Hang in, you can deal.