Hello from Australia, new to all this

Hello from the UK - five years pacemaker experience this end

by Gemita - 2023-03-08 07:35:23

Bruce, you are certainly not the first to say this, nor will you be the last member to admit to having difficulty coming to terms with a pacemaker and in your case a Defibrillator.  I see you have been diagnosed with Hypertrophic Obstructive Cardiomyopathy which is no doubt the reason for your Defibrillator to protect you.  I hope your Defibrillator/pacemaker, together with other treatments can control any adverse symptoms so that you can continue to have a quality of life, free from the fear of having a serious event.

I recall when I first received my pacemaker for tachycardia/bradycardia syndrome, long sinus pauses and syncope, I wondered whether I would ever live a normal life again.  I kept thinking that I had made the wrong decision to have my device implanted, especially when initially I felt far worse following the procedure, worse in terms of comfort and heart symptoms.  But slowly with healing of both my wound and my heart getting used to being paced, I started to feel better and one day I went the whole day without giving my pacemaker any thought.

I think the important thing to do once we are healed, is to assess how we can best move forward, whether we will need to make any changes to our lifestyle?  I see you have already started to do this.  Some of us don’t need to make any major changes and can do most activities, if not more with our pacemakers than before, but it really depends on our heart condition and advice from our doctors.  I see a pacemaker as a start of a new life, a safer, possibly more productive one, not the end of my life.  But I think “acceptance” of any limitations is necessary first and the adoption of perhaps newer challenging activities that will be better suited to our present circumstances.  But nothing is set in stone and you may well find that your condition improves with pacing and you can enjoy some of the activities once thought to be out of bounds, so please keep your spirits up. This is just the start of a new life.  I send my best wishes for a good recovery

So normal!

by Tracey_E - 2023-03-08 08:21:51

Everyone has trouble wrapping their heads around it. That's perfectly normal! We go through periods of anger, grief, fear, being down.

There's a difference between a bit of the blue and clinical depression. The blues goes away, depression is a disease and needs professional help. If it doesn't go away, if it affects your ability to enjoy life, it's time to get some help. 

No need to stay put while you heal! for 4-6 weeks we aren't to lift the arm overhead or lift anything heavy. Anything else goes. Go outside and get some exercise, it will help you feel better. 

Two things helped me turn it around. One, learning all about my device. I might not like it, but if I understand it, it's easier to accept. And getting active again. The more I did, the better I felt, and the easier it was to trust the pacer to do its job. Most of us eventually get to the point where we barely give it a thought. I'm a few years older than you at 56, but have been paced since I was 27. I still consider myself young for my age, pacemaker and all. There's a stereotype that only old people have devices, but as you hang out here, you'll see that is very much not the case. You are not alone. 

(((Hug for Bruce)))

by Lavender - 2023-03-08 10:15:33

Bruce-no blaming yourself for any of this stuff totally out of your control. I think you're mourning the person you were before this happened. Think of it this way-that person was dying from a sneaky problem that almost succeeded in snuffing you out. 
Now you're reborn. Your new life depends on this device. It's a fresh start. You're just getting used to it. You haven't learned yet how to adjust-but you will!

I am older than you and have had my pacemaker (CRT-P) for two years now. I felt ancient and depressed when my fainting and a 33 second heart pause bought me a pacemaker.  I didn't want to live like this but carried on. Prayer and meditation helped me. I used to sit outside in a hammock and gaze at the clouds, being outdoors always helps.

May God bring total healing in mind and body. May your spirit be renewed. 
You are not alone. 

Been There

by SeenBetterDays - 2023-03-08 12:34:18

Hi Bruce, it's a difficult road and I completely understand how you feel. I am 52 and had my pacemaker at 49 so still relatively recent. I always associated pacemakers with being elderly and couldn't wrap my head around being what I thought was a relatively fit and active person to someone who needed a device to keep their heart beating. The positive and courageous people on this site have really helped me see that it doesn't necessarily define who you are.  If I am honest I still mourn the old me but, as Lavender so rightly points out, the old me would have been long gone if I didn't have this machine to keep me ticking over.  I would echo what others have said, it will take some time to adjust but, in the meantime, make sure you get out into nature, look outwards as well as inwards and, if you feel able to, talk through how you feel with the people close to you.  You have been thrown a curve ball and trauma can absolutely lead you down a dark path.  Be absolutely certain that are so many of us who have experienced the feelings that you talk about.  You are early on in this process so what you are describing is absolutely natural and completely understandable.  Take care and just take it day by day for now.  This club has some really kind and supportive people who will always be here to understand and answer questions.  I am thinking of you and hope that you are gradually able to get back to the activities which you enjoy and make you feel more yourself again.

Coping

by Fable - 2023-03-08 12:36:56

Bruce although I have several years on you as I am 70,  I have to agree with the others.  I think it is normal feeling like you did after the PM surgery.   After mine I cried so easily for the first week. Just very emotional, not being used to having people helping me with everyday things. 

I sat around to much and had to make the decision to just get up and take my life back.  I am 3 weeks out but I want to get back to being me.  My prayers are with you. 

Thank you

by fattima - 2023-03-08 16:48:10

Thanks to everyone for the comments.

So glad I joined here and to see I'm not weird for feeling this way. I'm slowly getting back into some exercise so hopefuly that will help as well as having support of people in my life (and on this forum).  We just moved to a new city and are building a new house so this was a bit of a set back in our new life. But I now know I have a better chance of enjoying that new life,

Fable I understand the emotional part. I tend to be the type not to ask for help and am usually helping others. I'm very lucky to have so many people who care for me.

Thank you all again.
 

The New Me

by Stache - 2023-03-10 18:10:43

Like you, I am or was a long-distance bicycle rider.  I was struck down and have a dual chamber pacer 100% of the time now with no natural heartbeat.  It was a severe shock to me as an active male that could do anything and a Marine.  I was depressed for the longest time knowing I had to give up scuba diving, windsurfing, extended mountain bike rides, etc.  I felt like my whole world came crashing down on me as I lost my confidence now a heart patient.   My doctor told me I would get over it in time, two years on I still deal with it but not as I did.  I am back on the bicycle and the doctor told me to push it, "it won't hurt you".  It has taken a long time to man up that I can still do what I used to but now have limits.  Listen mate have a pint now and then and be happy, you will be fine.

Cheers Stache

by fattima - 2023-03-11 00:04:38

Thanks Stache, It is hard as a lot of my friends are still keen cyclists so watching them go on trips away is frustrating. Reading others stories on here is helping me understand I'm going to be OK. Went out for a gentle walk in the bush near our place, my partner is a keen bird watcher so great to get out with her. A pint sounds like a good idea! Cheers mate.

Bike and Pacing

by Stache - 2023-03-12 00:16:56

I was scared to ride my bike to far from my house on our bike paths along the rivers where I live.  However, I have learned with my pacer beating 100% of the time I don't get tired.  My pacer speeds up my heart knowing I am riding and I have to limit myself.  Doctors says to push it, I am a little more each time.  Riding has really helped me as it will you.  My iPod with rock and roll helps as well.

G'day fellow Aussie

by 73Rawk - 2023-05-25 23:59:12

Hey Bruce/fattima, I'm coming in late to the convesration as only recently came across this group. My defib/PM journey started in February after cardiac arrests in Jan (well technically one late Jan and then followed by another a week to the day in Feb...not fun!). I've run the gammit of emotions and feelings since it's installation which has been quite a journey including whether to return to playing drums live in front of audinces again. I'm lucky enough to have a very supportive circle of friends and family around me as well as a rockstar wife who I'm forever grateful for having in my life. My device was installed at St Vincents in Sydney due to the circumstances at the time and when I returned to Melbourne I immediately saught out a counselling service which has helped immensely. Within myself I've strived to stay positive, same days it's really hard but as folks on this site will tell you, we've been given a gift. 

Hope you journey has gotten easier over the last few months.