Exhausted at 45 years old, sure there should be another option?

Hi all, 

sorry for the long post...

I have a complicated medical history, I have a rare genetic syndrome called Carney complex. I have had open heart surgery 3 times to remove myxomas from my chambers. I no longer have any adrenal glands as they were misbehaving. 

I had PJRT which is generally a childhood disorder but was ablated in 2014. 

I have always had a bonkers heart rate, well as long as I can remember. After the last surgery it kicked off because of the new scaring. It’s very erratic and flips and vibrates in many different ways, on a night & sometimes in the day. Also depends on the time in the month. Most mornings I feel like I’ve run a marathon in the night.

My surgeon went in to ablate again and said what he saw was to near the main node, which could have led me to need a PM. I hadn’t signed that form;)   So I came back to the ward where my heart decided to race at 152, they tried me on flecanide which was amazing for 6 hours then my body started to misbehave again. 

They are saying I’m too young for a PM but I feel it will give me a life instead of struggling TIL I’m older.

Id like input on the positives of having one, I felt amazing for those 6 hours, all the water retention went, I saw my ankles again, I could breathe easily, my body hadn’t felt so good since I was 7. I can’t quite explain it but if it can give me that feeling of energy, so I can walk up the stairs without aching and catching my breath...... 

Is it as good as I’m imaging it to be? 

Thanks for your time 

fran ❣️

 

 

4 Comments

too young

by Tracey_E - 2017-12-06 10:41:53

You hit on one of my GIANT PET PEEVES. If it will give us our life back, who cares how old we are??? We are too young to feel old, especially if there is a fix.  I should have had one in my teens but they waited until I was 27. Still young, but at that point it wasn't optional. I wish I could have those years back. I'm 51 now, healthy and active and haven't regretted it once. 

That said, why do they think pacing might help? Can you take the flecanide without it or did it drop your rate too low? Or would they ablate and leave you needing it? All a pacer will fix is a slow heart. It's a gas pedal, not a brake pedal. It can't stop the heart from racing. It came help somewhat with irregular beats.  If that's what's causing your symptoms, or if it's a tool to take the meds that will help, then yes, you will feel better with it. If you have limited quality of life without it, then it's for sure worth a discussion, and age should not be part of that discussion. 

Life begins with a pacemaker

by Selwyn - 2017-12-06 14:06:06

Medically, it is so much easier to treat your arrhythmias with a pacemaker in place.

Flecainide is contraindicated with structural heart disease. 

Having recently had a rip roaring few episodes of fast heart rate, I now am, for a couple of months only, on Amiodarone, and my palpitations have settled. I will have another ablation ( having had an atrial fibrillation ablation in October) once the holiday season is finished, as I have probably got a single focus of electrical activity left. 

Complications from pacemakers are few and far between ( though at this club site we gather problems). My mother had a pacemaker without any problems, my mother-in-law ( with dementia) has a pacemaker that she does not even know about- she is able to walk up stairs, etc. without any problems. There are no risk free procedures, medically, in life. If you search ( top left) you will find folk doing triathelons, weight lifting, marathons, etc.

For a lot of us, pacemakers are life saving. You can go on to have a normal life span with some quality. 

Don't hesitate if the specialist thinks this will be in your best interests. 

Best wishes,

Selwyn

 

Sorry for late reply we are in India with intermittent Wi-fi

by Frannie33 - 2017-12-12 06:16:45

Thanks so much for the replies ladies. I will be back in touch when we return to the uk on the 15th. As I’ve lost my message twice already :) 

Changed goal posts

by Frannie33 - 2017-12-22 02:14:28

Thanks so much for your comments ladies. I saw my Arrythmia Doc on Monday. We discussed options, he did say my heart would have to be made reliant on a pacemaker for it to work and he wasn’t sure I was at that stage yet. 

He then told me that although it wasn’t his department, I’d had an MRI before we went to India on my heart and that I am growing another tumour in my left atrium this time. It wasn’t there in the May MRI. So it could be 13 months break after recent open heart surgery. I’m a bit fed up but am told my surgeon can ablate from the inside while removing the next tumour.   One bonus I suppose. 

Again thanks for your time 

x

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