Scared beyond belief 😢

Hi All, 

Please can someone help allay my fears as my head is reeling?

To recap I had a heart murmur diagnosed in my 30’s which was investigated by a cardiologist & described as a ‘benign systolic murmur’.

This was investigated again in my 40’s by a different cardiologist as my feet were puffy & again described as a benign murmur.

I’m now 52 & in Feb had a ‘collapse’ at work. I had a sensation of palpitations then found on the floor by a colleague.  I didn’t present as if I’d simply fainted, i.e. no loss of colour etc.

So my GP referred me a 3rd time to a different cardiologist who initially said the same as the others that I had a soft benign sounding systolic murmur. However, he also ordered a 24 hour ECG monitor.  This showed nocturnal 2:1 block, lentgthening of PR interval overnight and this raised the possibility of progressive heartblock with symptoms. He concluded I needed a pacemaker. The Consultant also noted my QRS is prolonged & amost at 120 milliseconds. He told me I needed a cardiac MRI & CT PET. 

I’ve has heart MRI & which showed I have a congenital hole in the heart (atrioventricular septal defect ASD). It also shows evidence of right heart dilatation & elevated pulmonary pressures. Am I right to be very concerned?

I now have to have an urgent transoesophageal ECHO (TOE) to see if this hole can be closed by cardiac catheterisation or whether I’ll require open heart surgery? This is going to be done on Nov 9th. Then once the hole is closed in my heart, I still need a pacemaker too.

My head is quite simply reeling with everything at the moment because for almost 20 years my heart investigations and echocardiography reported as ‘normal’.  Please does anyone else have any experience of any of this & would be happy to shed some light?

Many thanks in advance 🤔


2 Comments

a lot to digest!

by Tracey_E - 2018-10-29 11:22:56

I can see why you are feeling blindsided! I don't know much about ASD, hopefully someone else will chime in on that but I know ASD and electrical problems can go hand in hand, and I know that AV block is sneaky and hard to diagnose if we aren't in block all the time. An ekg that they do in the office is a snapshot so if the heart is behaving itself for the few minutes they have us hooked up, everything shows up perfectly normal. As long as we don't have symptoms, they don't dig deeper. 

AV block is about the easiest thing to fix with a pacemaker. The sinus node in the atria works normally so our heart is setting the pace. The signal isn't making it to the ventricles so the pacer steps in and completes the broken circuit. You'll probably notice a big difference in your energy levels. Every time we miss beats, our body isn't getting the oxygen it needs.

 

Progress!

by LondonAndy - 2018-10-29 18:53:49

I don't mean to dismiss your fears - you are at the worst stage of dealing with a health issue: knowing there is a problem, not knowing quite how it is going to be fixed.  But it looks to me as if this Cardiologist is making more progress than previous doctors, and is doing something positive about it before you have a blackout at a more serious, and possibly fatal, moment.

Yes, open heart surgery (if it is needed) is a big deal - I had this in 2014 for a replacement aortic valve.  But it is amazing how well they manage this now - I don't remember the operating theatre at all, just waking up in warm sunshine coming through a window, thinking "this is a nice hotel" before realising I had a breathing tube down my throat and remembering what I was in that 'hotel' for!  Pain management is fantastic, recovery programmes well thought out, and even the food wasn't bad.  So try not to worry about things you can't do anything about (easier said than done of course), and prepare for a better life expectancy afterwards.

You know you're wired when...

You have a $50,000 chest.

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As for my pacemaker (almost 7 years old) I like to think of it in the terms of the old Timex commercial - takes a licking and keeps on ticking.