Nervous…

So I have a gen change this coming week and to say I've been anxious and nervous would be an understatement. I went from them telling me I had 6 months left on my battery in July to them saying I had 3 months left in Sept to calling last week after I was woken up out of a dead sleep from the most awful feeling double bass drum in my chest saying my surgery is next week. 
 

At this point I know they're not telling me everything, which they never do... but I can't even really express my concerns around my family or friends because all it does is stress them out. My first implant was an emergency surgery and did not go well. I woke up during the surgery. Ended up unresponsive for over 20min 2 hours post up and was hospitalized for almost 2 weeks with them talking about air-caring me to Cleveland clinics because a bunch of weird shit kept happening. 
 

So when they say this will be an easy surgery, sorry but I don't take that at face value. None of my surgeries have ever been easy. There is ALWAYS a complication. That's not being pessimistic, it is just a fact. My body doesn't seem to handle things well. I have POTS, my autonomic dysfunction should win gold medals for its level at NOT doing its job. 

I have confidence in my EP, but I don't have a lot of confidence in my body. It just doesn't handle any kind of trauma well. I went from pacing 37% to 57% to 78% in a matter of weeks. Add in some arrhythmias and some RA to top it off and I've felt like hell. 
 

While I have a wonderful support system it's crippling at times. My dad used to be my go to guy to talk about this stuff with. He went through it all so he understood my moods and my fears and the physical pain, but he's not here anymore so there's no one to turn to that truly understands. 
 

The rest of my family can emphathize but they just don't understand the level of exhaustion. Or my frustration when I feel okay and have energy in the mornings and want to do things for myself vs them not letting me because they're worried I'll over do it. I'm not an incapable, I just get tired easily. Yes, I'm either pacing or my HR decides to take off like a rocket and I'm zoomin from 150-180. I haven't topped out in the 200s in quite a while so my meds are helping.
 

Anytime I'm having a hard time or don't feel well they want me to call the doctor. And say what exactly? They already know everything I'm dealing with. They can't fix any of it. Only manage it as best as we can, which is what we've been doing. I'm so sick and tired of hearing have you called your doctor? I've tried explaining to them bad bays happen and it just is what it is. So that leads me to internalizing and doing my best to not comment when I don't feel well so I don't have to hear it. Then again it's hard to them to miss me grabbing onto a wall or counter when everything goes black. Shit happens. My doctors are aware. We're doing the best we can. But fuck it's annoying. 
 

In all honestly until I get my change next week I've been having a hell of a time going to sleep. Because I don't know if I'll wake up. If my battery is dying that quickly and my arrhythmia are picking up and getting worse who's to say what could happen. I pray it won't, but it does scare me. Can I voice this to anyone? No. Do I have the time to find a therapist? No. Do I want another one? No. All the do is tell me I'm very self aware 🙄 

thank you for letting me rant and get all of that off of my chest. It just feels like I'm the ring leader of the shit show right now. Typically I live my life every day as it comes and try to make the best of it. But man it sure would be nice if my body would cooperate for just a little while. 

8 Comments

Venting

by Julros - 2021-09-18 15:09:10

Whew, you have a lot going on. No wonder you are nervous. It is a sucky feeling when you feel like the people around you don't seem to understand or give you a pat answer. It sounds like you really miss your dad. But you trust your EP, so that is huge. 

I suspect that many improvements have made since you last pacer, so hopefully you get one that is specific to you and your condition and have optimal programing. You seem like a strong woman and this sounds trite, but I feel like focusing on positive outcomes is helpful. Your providers know about your history and can be prepared for those negative events. Your body needs to listen up and do what you want it to.

You can come here and vent away. My condition is different from yours, but I have experienced  the anger and the feeling of no one listening. And then I found this group.  

 

Yes, please vent - that's a main reason we're all here

by Persephone - 2021-09-18 16:32:55

To echo Julros' message, I know this also may sound trite, but I am sending lots of positive thoughts your way, VMurph, as you prepare for your upcoming surgery.  Please keep us informed on your progress.

We all need to vent....

by BOBTHOM - 2021-09-18 18:36:35


We all need a place to vent with others who understand sort of.  Though not exactly identical, we're all going through similiar.  I know I've come out here to vent as well!  Feel free anytime and know you are being heard!!

BRING IT ON

by athena123 - 2021-09-18 22:46:44

HI, I KNOW HOW YOUR FEELING BECAUSE WE HAVE ALL HAD AT ONE POINT OR MANY SIMILIAR SITUATIONS AS YOUR FEELING. IT SOUNDS LIKE YOU HAVE A STRONG WILL AND JUST THAT ALONE WILL GET YOU THROUGH THIS. IF YOUR EP IS GOOD THEN YOU WILL BE FINE. TAKE CARE OF YOUR BODY AND CALM YOUR ANXIETY BY WHAT I DO IS MEDITATE AND LEARN TO BREATH PROPERLY. THIS WILL BE A WALK IN THE PARK. ALSO, MAKE SURE YOU GET PLENTY OF ELECTROYLTES AND ANTIOXIDANT THAT WILL STRENGTHEN YOUR IMMUNE SYSTEM. AND ANY TIME YOU WANT TO VENT WE WILL ALWAYS HAVE YOUR BACK. BEST OF LUCK  

We’re Always Here

by MinimeJer05 - 2021-09-19 02:11:16

As others have already said, we all have gone through something similar at one point or another and the most important thing to realize here is that we are here for you no matter what -- rant, vent, bitch, moan, complain, cry or celebrate! We have strength in numbers and honestly knowing that can be half the battle. 
 

I will be praying for you and sending the positive vibes as much as possible and am hoping that for once, your body doesn't have any sort of complications or issues this time around. It's good to hear that you have a good team of doctors and surgeons that will do their best to take care of you.

im sorry to hear that your dad isn't around and that your family doesn't seem to quite understand the level of exhaustion, pain and fear that you have -- my family has been so supportive and helpful in my journey, but there are days that confuse them (I'm feeling great in the morning and then like crap in the afternoon) and it's just apart of the process. 
 

keep us updated on your progress and know that you ARE NOT alone and that things will be better. 
 

jer

Thank you

by Vmurph - 2021-09-19 11:11:11

Thank you! I appreciate the support. I was just in a mood yesterday. Not sleeping well for the last few weeks probably hasn't  helped that. 
 

My family really is very supportive and they've been amazing, it's just hard to get them to understand sometimes. They tend to go to the extreme of not wanting me to do anything for myself and try to do everything for me. Which sometimes I will admit I do need help but other times I don't. The times I don't, and they still insist on doing everything-- That tends to get annoying, but I know they do it because they care and don't want anything bad to happen. First world problems, a family that cares too much right? I think I just get frustrated at the world like I did yesterday because I'm frustrated with my body for not doing the basic things I need it to do. 

I do miss my dad dearly. He was my best friend and it hasn't been very long. So not having my go-to for all of this crap makes it even harder. 
 

again, thank you for responding to my pity party of one. It made me feel less alone! ❤️

hey

by Tracey_E - 2021-09-20 09:22:04

Good luck with the replacement! Sometimes we just need a good pity party and to talk to people who understand. Vent all you need.

So very sorry about your dad. 

I know you have a history of the worst luck but replacements are about as easy as it gets. I'm on #5 so that's speaking from experience. They go in through scar tissue, we've already got the pocket for the pacer- that was most of the pain the first time. Unless they've told you you have a problem with a lead, leads usually last through several generator replacements. New leads were most of the restrictions the first time. So (KNOCK ON WOOD) there isn't much to go wrong here. Let us know how it goes. 

how did it go?

by dwelch - 2021-10-09 11:02:53

Sorry I didnt see this post before.  I would say that the battery does not die off so rapidly there is plenty of time to change it so no need to worry about that.  And that this is something you have to do, so you have to do it.  I fully understand worrying about it, and I lose a lot of sleep from such things, but at the same time.  gotta do it.  Mark the calendar, get up and get a ride to the hospital, wear the thing, take the thing, lay on the thing, take a little nap, wake up with a new shiny pacer, working perfectly, and go home.  Lose a few days/weeks of sleep from the pain of the recovery and go back to normal (worrying about things other than the pacemaker).

Lost my dad a few weeks ago.  Lots of things I want to talk to him about but cant.  We are here for you, no worries.

You know you're wired when...

Your license plate reads “Pacer4Life”.

Member Quotes

At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!