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Released from hospital yesterday. I discovered this club today. The psychological side of this life situation has really hit me hard today. I am 46 and need help adjusting. Any tips from anyone? I am grateful for any wisdom. Thanks Jon


8 Comments

Focus on being able to do things with your PM that you couldn't do without it

by crustyg - 2019-10-30 18:03:50

The 'shock' of having something implanted or sitting inside you, that controls a big part of you, that you have little or no control over and which other folk are able to control is a big blow.

Focus initially on what good things come from your PM: staying alive, being able to walk/climb stairs without fainting etc. are all good first steps.

It's almost certain that your PM will need some adjusting to deliver what you need for your level of activity and lifestyle.  This is where the forum can really help, as the more you know about your PM and how it works and interacts with your body, the better you can negotiate with your EP team to get them to give you what you need.  They may think that they know what you need, but only you can really determine that.  You have to be your own advocate.  The more you know and understand, the more they will share information and explanations, and the sooner you will arrive at a correctly set-up device.  Grab and read all of the patient information leaflets, check the Web for knowledge about your PM (leadless, I think?) and try and fit that together with what brought you to having a PM in the first place.

Then you get on with your life.  And, impossible as it may seem now, you will suddenly realise that a whole day has gone by without thinking of your PM.

Baby steps, and focus on the positives.  I think almost all of us have been through the journey.

Best wishes.

This will give you a new lease of life.

by Graham M - 2019-10-30 18:42:46

As i was being discharged from the hospital exactly 11 weeks ago today, the Charge Nurse told me I would have a new lease of life.  I was a little sceptical at first, but she was right.

A month off work and the chance to do all the things that crustyg has suggested to you has helped me immensely.  You will probably feel a bit rough for about 6 weeks, but then you will start feeling better.

I live at the top of a steep hill and walk home from the station every evening.  3 months ago, I would have had to stop 2 or 3 times to get my breath back, but today I walked it without having to stop and arrived home only slightly out of breath and without feeling dizzy. If this is what it is like after only 11 weeks, I am looking forward to the future.

If you keep positive and do all the right things, there is a new life waiting for you out there.

Don't worry about your heart - it will last you the rest of your life.

Best wishes,

Graham.

The pacemaker is easy

by AgentX86 - 2019-10-30 22:51:29

It'll fix what's wrong with you and make you whole.  It's a small price to pay for a normal life.  I wish everything that has gone wrong was as easy as my pacemaker has been to get past.

normal

by Tracey_E - 2019-10-31 09:06:57

Know that it's normal to have more trouble adjusting emotionally than physically. Give yourself permission to mourn, to be angry, to feel sorry for yourself. Then make a decision to move on. Two things got me past it. Learning all I could about my device and condition, the unknown is scary but I can accept what I can understand. And being active again. Doing things I couldn't do before, staying busy. As we get back to our normal lives, we think about it less and less until one day we realize we haven't given it a thought in days, or even weeks. 

Grief

by Violet West - 2019-10-31 18:13:47

Understand that you are grieving -- for your health; for your heart.  Consider that you are going through the stages of grief, and give it time.  

what kind of anxiety?

by dwelch - 2019-10-31 19:21:38

There are different issues some folks have one some folks have many, we didnt get a bio or info on what it is that you are concerned about.   Many folks had some event, woke up in the hospital with a pacer, which could trigger many different issues.  I didnt know I had a problem, did I really have a problem or were the docs shooting from the hip in the ER, I had surgery and fears from that, to the normal I have a pacemaker they said i cant do this or that, etc.

The media and tv shows and such have painted an unfair/incorrect picture of having a pacer.  Having a pacer does not make you vulnerable, its the not having the pacer that is the worry, having the pacer is good not bad, generally makes you normal not abnormal.  

As far as the surgery they pop these things in and replace them all the time, aint no thing.  recovery takes days to weeks, some things you can return to in days, others take weeks, move at your own pace.  you should be back to what you considered normal before you know it, wont need another for many years, depending on your condition you may/should be able to exceed what you considered normal.

In my case there was a lets say physical component, the pacer fixed my heart block and made my rythm normal, my heart was no longer overworked, I could no longer feel every beat as before, so there was an emptiness, no longer a constant rushing in my ears.  It took a while to get over that and get used to the new quiet/smooth rythm.  as in moths if not most of the first year.  not everyone has that experience, depends on your condition and how bad it was and how the pacer has fixed it.

Living with a pacer is relatively easy, like your belly button or toes you really do forget they are there, you know you have them but until you stub one on something you dont think about it and not long after you forget again.

Listen to Tracey_E is a good way to start, really has dug in to the education, know everything about it solution.   How much you should or want to know may vary, you should learn enough to have a conversation with the doctor about it, dont need all the medical terms.  Know what your condition is, a rough idea how the pacer is helping, etc.  My advice is always get a copy of the report when you go in for an interrogation.  If nothing else between visits you can ask questions here, if someone then says do you know what your such and such setting is, then you can dig it up and respond.  Usually though 99.9999999 about all that is talked about as far as settings is the upper and lower rate which you should know.  your pacer shouldnt let you ON AVERAGE go below that rate, count for a full minute dont cheat, and dont use fitbits or other devices they may not work right for us.   That is how I got through that first year, taking my pulse, you know every single time my heart was actually beating even though I couldnt feel it.  there were no exceptions.

 

You are going to have countless mini anxiety events, no matter how many posts you read no matter how may times we tell you a static zap is okay when you touch the light switch, you will still have some anxiety for every little thing that concerns you from stupid warnings for pacemaker patients using a coffee maker to the metal or other detectors at the airport.  You have to at least deal with each one of these once if not more than once, and that takes a period of time as you can imagine.  This is all perfectly normal, we all have been through it and came out the other side just fine.

The thing makes you normal it allows you to have a full life, in my case to become an adult, get married, have a house and a child, see her go off to college, etc.  Without it those things would not have happened.  I am 32 years with pacers now and on device number five.  

Your mileage will vary, there is no formula for anxiety, everyone is different, their solutions be it focus on the problem or distract from and how you do that varies widely.  

You WILL find a way through, that is the bottom line.  You WILL come out the other side of this, healthier than when you went in, or were forced in or whatever caused your device.  Damn glad to have you here.  Keep on posting, keep asking questions, there is no stupid question here.

 

I was 46 when mine was implanted too

by Jo S - 2019-11-01 22:32:09

I had a biventricular PM / ICD implanted at 46 (now 5 months ago).  I had a really hard time with it psychologically too.  I was not having any symptoms when I was diagnosed with idiopathic dilated cardiomyopathy, so it's not like the PM made me feel better and gave me more energy.  I knew intellectually that I was lucky I was diagnosed and that this would hopefully keep me from dropping dead of an arrythmia and keep me healthy in the long term, but I still felt unlucky to suddenly go from seeing myself as a relatively healthy person to a "heart patient" who had a PM.

It got easier once I physically covered from the procedure and was able to live my normal life without thinking about it all the time.  (My arm and chest hurt a lot at first, so it was a constant reminder.)  I have also very consciously tried to focus on the positive and focus on the things I can control.  This has reminded me that life can change overnight, so I don't want to waste time being sad about having a PM.

I also had an anxiety attack on a pretty remote vacation that I was pretty sure was just anxiety but not entirely.  It was pretty cool and reassuring to be able to transmit the data back to my doctor's office and get reassurance from the nurse that my heart rhythm looked fine.  That helped me realize that what I was really upset about was the diagnosis, not the pacemaker.

Welcome to the club

by CyborgMike - 2019-11-04 02:16:27

Yeah, it sucks at first. This was in nobody's life plans, but once I got past that, I had nothing but gratitude. We were born in a point in history where amazing technology can fix our heart. I'm living on borrowed time. I've lost 30 lbs, exercise/run daily, travel every week, and rarely do I know I have a PM. Once I got over the physical healing (a few months), it has never slowed me down. Focus on the positives and go live an amazing life. You are one of the lucky ones. 

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