Still Struggling

Hi all, have never posted before but have dipped in and out of reading since having my pacmaker inserted in October of last year.

I had been very ill for almost two years with no answers, had every scan and scope under the sun until i was scehdule one day for a laproscopy and all of a sudden, 10 mins before i was due to be in the OR there was nurses and doctors running about the place, hooking me up for ECGs etc because my heart rate was abnormally low.

I had no idea what was going on fast forward 3-4 weeks and they were bringing me in for a test to check my heart rhtym and then again ten mins or so out from that everyone was in panic stations.

My heart rate was in the 20s they told me and instead of the test they were going to have to do an emergency pacemaker insertion and that i wouldnt be going home that night.

Whirlwind doesnt cover it,  i was all alone in the hospital before surgery because i had sent my partner home already because it was only supposed to be a test.

I was terrified.

I honestly didnt know what a pacemaker really did.

It was a week to the day after my 31st birthday and i ignorantly thought pacemakers were for older people.

I remember waking up freezing and shivering, my partner was there and my family fololowed in shortly after.

I put on a brave smile for everyone because i knew they were also in shock and were so upset and worried for me.

I remember my surgeon coming in to speak to me after i had had something to eat and i just broke down because the first question i needed to ask was what does a pacemaker do.

Recovery took a long time for me, i was out of work almost two months.

I know that i am feeling much better now and grateful and aware of how close i was to deaths door.

I have to admit though, not having the time to prepare mentally has really been hard to wrap my head around, i'm sure its not easy in any circumstance though.

I find people i know are so focused on the positives that they dont want to hear me talk about the negatives and that has been difficult.

I have great weeks and then i have times where i could be doing anything and i break down in tears.

This site has really helped when i have neede to see common things that people have experienced and has helped calm many worries i have had over the course of the last few months.

I'm heading towards a year to the date that my pacemaker was inserted and i feel like maybe thats triggering me but i thought at this stage the random bursts of tears would have stopped.

Is anyone eles struggling like this?

 

 

 

 

 

3 Comments

It's hard

by Theknotguy - 2018-08-27 10:43:12

Yeah, it's hard sometimes to get your head wrapped around what happened.  Add to that the traumatic way you got your pacemaker and it makes it really hard sometimes to sort things out.  

I was walking down the trail with the dogs.  Not a problem to be concerned about.  A beautiful day.  The dogs and I were having a great time.  Turned the corner to go on the exit trail, everything started to go black.  Next conscious thing I knew the nurse was shaking my arm saying, "You've been down too long, time to get up."  Six days had passed and I had a lump next to my left shoulder.  "You've got a pacemaker, deal with it."  So yeah, it can be something to wrap your mind around.  Some people would call your feelings PTSD.  I'm not saying my dog is bigger than your dog.  Just saying that getting a medical whack on the side of the head like you did can really scramble things.  Sometimes you need to talk with someone who can say, "This is the way out."  

What can you do?  Well, get help.  First problem is to sort out why you're feeling the way you feel.  I had heard people with pacemakers and heart problems can get depression.  So I made an appointment with a psychologist who dealt with trauma and medical problems.  Yes, there really are people like that out there.  For some people there is a stigma attached to talking with a psychologist so if you don't like that idea, try for some kind of disinterested third party counselor.  If you don't know who to contact your EP/Cardiologist may have someone with whom you can talk.  

Partners have agendas, Family has agendas, Doctors are too busy.  Platitudes don't help and people who use them drive me insane.  You need to talk with someone who isn't emotionally involved and who is accustomed to talking with people in your situation.  

I won't go into all the different things you might be feeling.  That's for the psychologist (or whomever) to do.  This forum may be a help as you are talking to people who have the same medical device and the same medical problems and that can be a help.  But sometimes the get-out-of-bed, get-on-with-your-life attitude is the last thing you need.  Especially when your mind is saying, "I just want everything to stop while I sort things out."  

Are your feelings "normal"?  Yep, sure are.  Just took your brain a little longer to let things bubble up to the surface.  And, of course, anniversaries are a good time to bring things to your attention.  

My best wishes for you and I hope you can quickly find someone who can help.  
 

Random Bursts of Tears

by Grateful Heart - 2018-08-27 11:21:13

It is a process...a grieving process.  A feeling that our hearts have failed us.  When I had a miscarriage many years ago, I would have random bursts of tears.  Grief....it takes time...but then we have to move on.

You can talk about the negatives to us...we've all been there and sometimes...a new negative pops up.  That's part of life....and part of being a PM recipient.   

We need to put it in perspective.  As you said, we are grateful to still be here.  Many people do not have that option.  Most of us were worried when we were told we needed a PM or CRT-D...the unknown can be scary.  

I have a CRT-D for almost 10 years now.  I've had some ups and downs with it, more ups then downs.  I just had my first replacement last month.  In the beginning with my first device, I was afraid to move or turn quickly.  I didn't know if that would set my defibrillator off. I also didn't know much about pacemakers, didn't know about this site and didn't know anyone who had one.  It was the unknown....and it was scary.

I too was worried about my family...a worried husband and 4 worried teenagers.  I had to get them through this....lol. 

I read about Cardiac Rehab and asked my Cardio if I could go.  I had to get control of my new normal.  Cardiac Rehab and the wonderful nurses were so helpful.  You exercise in a group setting on different machines while wearing a portable EKG device and the nurses monitor your heart.  I exercised as hard/ fast as I could.  I figured if I was going to set my defib off....that was the place to be....surrounded by nurses and a crash cart.  3 days a week for months, my defib never went off...and I got stronger.  

I had about 2 months before Either way, by emergency or

Learn all you can about your condition and device, it will help to ease your mind...and then you can ease your families mind too.

Knowledge is power.....and so is Cardiac Rehab.  Acceptance and attitude is key.

You can private message me any time if you would like to talk.

Grateful Heart

struggling

by ROBO Pop - 2018-08-27 14:55:19

while this could be a temporary issue, brought on by your upcoming anniversary, but unfortunately anxiety, depression and emotional turmoil often go hand in hand with heart issues yet while that fact is well known, doctors rarely address the problem.

I'll share something, but do not spread this around, I have a tough guy image to uphold so keep this quiet. I have had defibrillators and CRT's for nearly 12 years now. Often I get emotional and tear up over very small things. It's embarrassing for me. My 36 year old son even commented he has never seen me cry. So you see, you're not alone. If it bothers you, talk to a professional like a psychologist, there's no shame in it. 

Good luck and please don't share my secret

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