New to all of this and overwhelmed

Hi everyone,

I got my PM implanted 2 days ago. In October I had to have open heart surgery for aortic valve replacement. I developed 3rd degree heart block in the hospital but it resolved and I was discharged with no issues. However, last week I started experiencing SOB, fatigue and very low HR. Turns out the heart block came back and the only solution was the PM. Doctors really had no answer as to why it would go away for 5 weeks and then come back and apparently it's pretty rare what happened to me. I was just getting back to normal from the valve surgery and now this. Anyone have any similar experiences? I feel so lost and overwhelmed bc I was always prepared to have the valve replaced (congenital bicuspid valve that gave me a good 45 years). But to now have the block and permanent PM on top of that. Thank you for any advice/input. 

5 Comments

Welcome - you should be fine

by Gemita - 2020-12-10 11:43:34

Dear SRD32,

Welcome to our world.  You will be in a much better place now, protected and safe so please try not to feel overwhelmed.  A pacemaker is really the very best and the only treatment for a 3rd degree heart block.  

I have read your experience and I am truly sorry this has happened to you.  With any surgical procedure, there is always the risk of a complication.  Permanent complete AV block is a serious complication after aortic valve surgery.  It is a mystery why the block went away for 5 weeks only to reappear, but once we start having a problem it is only likely to get worse over time and is usually best treated before you get worsening symptoms.  I would try not to spend time worrying about why this has happened and instead focus on getting better again and looking forward to what lies ahead.  

You will hear from many on this forum how you can look forward to a normal life with a pacemaker.  I have a pacemaker for a different condition from yours, but nonetheless, it has improved my quality of life to such a degree that it has turned back the clock for me and given me renewed energy and enthusiasm to do more in my life and to have absolute confidence that while my body may let me down in the future, my pacemaker never will! 

I wish you a speedy recovery and a healthy and happy future ahead.

Thank you

by Srd32 - 2020-12-10 14:36:32

Thank you so much Gemita. Reading your comments really helped me today as I was struggling to stay positive. And you're absolutely right- I need to focus on getting better, being thankful that nothing worse happened and not worry so much about why it happened.

I am so thankful I found this forum. It truly helps so much to read about others' experiences and helps me to not feel alone in all of this.

Feeling better

by Persephone - 2020-12-10 16:09:39

Hi SRD32 - I hope you're feeling better with each day.  The wondering of why and how we became members of this club, and what's next can be quite burdensome and distract us from focusing on recovering and getting back to normal, or to our new normal.  While I can't change it now, looking back to the earlier months after implant, I wish I would have spent less energy on worrying and more on simply enjoying life.  Educating oneself can help, as can counseling and extra attention to self-care.  Best wishes to you.

Your life will be OK.

by Graham M - 2020-12-10 16:51:30

Welcome to the most exclusive club in the world.

16 months ago, after about 18 months of SOB, fatigue and lightheadedness, I collapsed and was taken off to hospital.  The paramedic in the ambulance spotted that I had an abnormal rhythm and I was taken to the cardiac care unit where I was diagnosed with a Mobitz type 2 block, and they gave me my PM.  

A couple of months ago, I had a PM check and the physiologist told me I had total heart block and that I had originally had an intermittent complete heart block, so I am not surprised to hear your block went away and came back again.  I must admit that when told I had complete heart block, it shook me up, but with the help of this club, I was able to come to terms with it.

There is no rhyme or reason as to why we get heart block, but we are very lucky to have a treatment for it.  Some medical treatments keep you alive and others make you feel better, but a pacemaker does both.

You probably feel pretty awfful right now, but if you follow all the advice given to you by your doctors etc. you will begin to feel better in just a few weeks.  When I was discharged from hospital, one of the nurses told me that I would have a new lease of life, and she was right.

Best wishes - I hope you have an uneventful recovery..

Graham.

Intermittent Heart block continued...

by Sisterwash65 - 2020-12-10 18:36:22

Apparently the intermittent heart block is more common than we thought. I got a PM implanted in May,2020 after 2 episodes of near fainting, months apart. At various times since my diagnosis I've been told I have 1st,2nd and 3rd degree heart as well as complete heart block !  At my last device check the tech called it intermittent. My doctor had never called it that but said "frequent " heart block.

I can imagine with the valve replacement and then a PM you're having adjustment issues. Anybody would be the same ! 

As the others said, it helps to focus on the positive as I'm sure you are.The technology we have available to us today is miraculous. I'm so thankful to have my " problem" fixed and also for this forum so we can talk with others who have had to deal with similar problems.

My best wishes to you in your recovery.

 

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