New to having a Pacemaker

For those of us with SA-node disease it's usually a journey

by crustyg - 2023-11-12 03:27:09

Contributors here tend to fall into three groups: those with heart disease related to diet+lifestyle, those with genetic and/or congenital issues and those for whom their active lifestyle (plus probably some duff genes) is a key part of the problem.

I don't say the above to try and place blame or suggest that 'you brought this on yourself' - that's pointless and unhelpful.  We each of us are where we are and accepting that is a key part of reasonable mental health.

It's more that many of us here had an inkling about developing heart-related symptoms, and that helped steer our medical journey.  For the third group - which sounds like you - there were no obvious clues about the root cause of their symptoms.  And that makes the diagnostic journey *much* more difficult - when we finally seek medical help we often see the wrong doctors or the wrong type of docs.  I can imagine you seeing a lung expert because of breathlessness, when clearly this was caused by lack of oxygenated blood being delivered by your heart and a buildup of lactate+other compounds for the same reason - the brain interprets that as 'feeling out of breath'.

Some of the congenital complete heart block patients struggled with low cardiac output for 20+ years before getting a transformational PM.  My SA-node disease journey was about 7 years - and yes, it was 'self-inflicted', too much competitive running in my 40s and 50s.

But as the wise African lady said, getting old isn't an Entitlement, it's a Privilege', and I'm very grateful to live in an era when it's fixable and to live in a country rich enough to afford it.

You give a really good description of trying to live an active, healthy lifestyle with Chronotropic Incompetence - you couldn't raise your HR to what your body needed.

Welcome to the Club.

What it has been like

by Good Dog - 2023-11-12 08:26:52

I first want to note how fortunate we are to have so many wise, intelligent, educated and compassionate contributors here that make this such a great resource for folks like us. You just heard from one of them in the previous post.  

I think that I fall into each of the three categories Crusty mentioned. I received my PM two weeks after turning 38 years old. I definitely had congenital issues with episodes of passing-out as a youngster. Those subsided before I hit my teens. I did not receive any kind of a diagnosis until I was 27 years old. I was sent for a cardiac cath when it was discovered that I had a 1st degree AV block as a result of my first ever EKG during a physical exam. I was also diagnosed with bradycardia at the time.

I was always very active in sports, but often troubled by occasonal episodes of dizziness and feeling as though I might pass-out at times when I was stressed and pushing myself to the maximum of my abilities. I now know that it was Chronotropic Incompetence. That did not happen regularly, but very unexpectedly on occasion. On the wrestling team in high school and boxing in my late teens there were rare and unexpected occasions when I would just hit the wall. I would suddenly lose my strength and become dizzy. I suppose you could say that I was not the brightest bulb in the pack, because instead of seeking medical attention, I just chalked it up to being who I was. Feeling that I just had to live with it.

Finally, at the age of 38 the morning after drinking beer and lifting weights with a buddy, it happened. I was at work and suddenly could not walk more than three steps without being out-of-breath. I took my pulse multiple times and found it to be pretty steady at around 35 bpm. I knew something serious was wrong, but was determined to complete my shift. I went home and told my wife who exclaimed that we needed to go to the ER now. I refused, because there was a big game on T.V. that I had to watch. So after the game I did go. They admitted me to the ICU where I laid all night watching my pulse on the monitor jump from 35 to 12, back to 28. They did nothing other than the nurse occasionally checking on me until morning when they advised that I needed a PM.

For two weeks after getting the PM I thought my life was over and became very depressed. It was a time before the internet and I had nowhere to turn for information. So I called the hospital and spoke to a very nice nurse. She asked if it was O.K. to have a few guys with PM's around my age call me to explain their experience with having a PM. That nurse was a saint! Maybe an angel from heaven? These young guys started calling and explaining that they lived full lives and their PM's did not hold them back from doing anything. I remember one guy saying when he went to the beach he would throw a towel over his shoulder and nobody even knew he had a PM. One guy was a roofer carrying 70 lb bundles of shingles on a roof all day. That changed everything for me! So I set my mind to finding-out what I could do when I healed-up. About six months later I was playing competitive basketball and running till my pulse was so high I could not longer count it while on the court. I felt great and found that most of the time my heart was working well on its own as my pulse was above the max setting. 

Now, 37 years later I remain a very grateful PM recipient. I have lived a completely normal life for all these years with zero restrictions. I have a few issues now as old age has set in, but still plan to make it into my 90's. That is my story. I am sorry for the length of this.

I really wish you well and hope you go out there and live a long and happy life while forgetting that you have a pacemaker! That is the opportunity ahead for you!

Sincerely,

Dave