Had a heart attack on Monday.

Had a heart attack on Monday.

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Discussion

MYOB

4,863 posts

141 months

Wednesday 2nd November 2022
quotequote all
pidsy said:
I’m getting the full package.

Defibrillator and pacemaker. All in the next 10 days. My new consultant was really nice and the cardiac physiology team that I had a separate meeting with afterwards were also lovely. I feel much better about it all now I’ve had it all explained to me in depth. I got to see the unit and leads that will be implanted, had all my questions answered and am now feeling quite positive about it all.

In terms of driving, it’ll be 4 weeks I can’t drive for which isn’t too bad.

I feel like a huge weight has been lifted. Just got to wait for a call in the next couple of days.
Great news. These devices may well save your life one day! Best of luck.

55palfers

5,944 posts

167 months

Wednesday 2nd November 2022
quotequote all
pidsy said:
Thought I’d give an update.

After coming out - I had a seven day tape in august and a follow up cardiac MRI in September.

Had the results appointment with a consultant yesterday. Turns out things aren’t going very well.
My tape showed that overnight (on 3 different nights in the week) my heart stops beating - the longest period being just under 5 seconds.

He believes that I have another genetic fault - a type of cardiomyopathy. In his words “we need to keep a very close eye and get this sorted”.

Got a call after lunch today and they’d had a case meeting about me this morning and there is a renowned specialist on their team who is very eager to meet me so I’m back at the cardiac unit tomorrow for a meeting to with them to discuss what they plan to do.

Last night it was briefly mentioned that I could end up with a pace maker with built in Defibrillator- I’m guessing he was right and that’s the discussion we’ll be having tomorrow.



.
It’s all happened so quickly - nothing for months and now mayhem in the past 24hrs.

If I’m honest, I’m absolutely terrified.
I’m not scared of having the kit fitted, I’m scared of the unknown. It’s a really horrible feeling as a (normally) very fit and healthy 41 year old.
I guess I’ll know what’s going to happen this time tomorrow.
I had a ICD fitted a few years back.

In January of this year it saved my life!

Keeled over. Gone.

ICD kicked in and here I am. Still.

ICD is monitored via home base station so hospital called me the following morning to come on for a once over.

595Heaven

2,441 posts

81 months

Wednesday 2nd November 2022
quotequote all
pidsy said:
I’m getting the full package.

Defibrillator and pacemaker. All in the next 10 days. My new consultant was really nice and the cardiac physiology team that I had a separate meeting with afterwards were also lovely. I feel much better about it all now I’ve had it all explained to me in depth. I got to see the unit and leads that will be implanted, had all my questions answered and am now feeling quite positive about it all.

In terms of driving, it’ll be 4 weeks I can’t drive for which isn’t too bad.

I feel like a huge weight has been lifted. Just got to wait for a call in the next couple of days.
Woo! That does sound like progress!

MXRod

2,762 posts

150 months

Wednesday 2nd November 2022
quotequote all
The delay in being allowed to drive ,is to let the wound heal and so as to not disturb the implant until it has settled into position .
So no gear changing , no lifting with left arm , and keeping it below shoulder level , and you will be told to rest for a week or so.
A check up after 6 weeks , then 6 months . In those visits the device is fine tuned , and also they can judge battery life to program a new set AAAs
in the future .
Finally DVLA must be informed , in my case a formality , but it is a legal requirement

pidsy

8,075 posts

160 months

Wednesday 2nd November 2022
quotequote all
Thanks all - especially to Guy for your message.
Times and situations like life affirm the PH is a good place full of good people.

I feel fully briefed and the same as when I was in earlier in the year - huge thanks and respect to the cardiac team at Watford.

Waitforme

1,217 posts

167 months

Wednesday 2nd November 2022
quotequote all
Good luck on the day .
I’m sure it puts life into perspective, sometimes we just take it for granted too easily.
A lot of people would give everything for good health.

Pit Pony

8,969 posts

124 months

Wednesday 2nd November 2022
quotequote all
pidsy said:
Thought I’d give an update.

After coming out - I had a seven day tape in august and a follow up cardiac MRI in September.

Had the results appointment with a consultant yesterday. Turns out things aren’t going very well.
My tape showed that overnight (on 3 different nights in the week) my heart stops beating - the longest period being just under 5 seconds.

He believes that I have another genetic fault - a type of cardiomyopathy. In his words “we need to keep a very close eye and get this sorted”.

Got a call after lunch today and they’d had a case meeting about me this morning and there is a renowned specialist on their team who is very eager to meet me so I’m back at the cardiac unit tomorrow for a meeting to with them to discuss what they plan to do.

Last night it was briefly mentioned that I could end up with a pace maker with built in Defibrillator- I’m guessing he was right and that’s the discussion we’ll be having tomorrow.

It’s all happened so quickly - nothing for months and now mayhem in the past 24hrs.

If I’m honest, I’m absolutely terrified.
I’m not scared of having the kit fitted, I’m scared of the unknown. It’s a really horrible feeling as a (normally) very fit and healthy 41 year old.
I guess I’ll know what’s going to happen this time tomorrow.
Got a friend with a defibulator.
It's probably the reason she's still alive.

Waitforme

1,217 posts

167 months

Wednesday 2nd November 2022
quotequote all
Good luck on the day .
I’m sure it puts life into perspective, sometimes we just take it for granted too easily.
A lot of people would give everything for good health.

pidsy

8,075 posts

160 months

Wednesday 16th November 2022
quotequote all
Slight update - their urgency 10 days to 2 weeks will actually be a month by the 28th which is my actual date.
That’s done me no favours mentally.

Got a radioactive scan at imperial college London next week to try and find out what else is going on - no carbs for 30 hours beforehand and only water for 18 hours beforehand. That’s gonna be st.

GT3Manthey

4,586 posts

52 months

Wednesday 16th November 2022
quotequote all
pidsy said:
Slight update - their urgency 10 days to 2 weeks will actually be a month by the 28th which is my actual date.
That’s done me no favours mentally.

Got a radioactive scan at imperial college London next week to try and find out what else is going on - no carbs for 30 hours beforehand and only water for 18 hours beforehand. That’s gonna be st.
Sorry to hear you’re still going through it mate .

Can see it’s a mental head fuk.

Keep us posted and think positive

V1nce Fox

5,508 posts

71 months

Wednesday 16th November 2022
quotequote all
Agreed. Keep posting on here if it helps focus, perhaps diarise the experience.

colin_p

4,503 posts

215 months

Tuesday 22nd November 2022
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Thought I'd drop in having been made aware of this thread by Pidsy in an insurance thread.

I'm also a member of the ICD owners club and it is both nice and horrible to know there are a few others with one on here.

A very quick history of my heart history;

June 2005 aged 34 -

Viral infection (chicken pox) caught from my kids. I'd not had it as a child myself. The virus went for my heart, repeated cardiac arrests and shocked back (crash cart... charge 180... clear... boo-domp...type thing) before I was stablised in A&E. Spent a week in intensive care, then a further two weeks in hospital. Came home, all good, some follow up appointments and checks for a year or two, all good.


August 2013 aged 42 -

Was driving home. I'd just blatted down the A404 from High Wycombe, came off the A404 at Bisham and then hooned (as you do) up through the twistiies towards Maidenhead. I've described that for context as for anyone who the twisties road, it requires undivided attention if driven quickly.

Past the twisties, the road straightens and drops from NSL to 40 and later down to 30. I never sped along that bit anyway, but on this occasion I felt strangely calm and at the same time euphoric, I remember it vividly. Just where it dropped from 40 down to 30 (I was already doing 30) I felt dizzy. Really dizzy.

And then I realised I was going to pass out. I managed to put the car out of gear, braked hard and intended to gently bump up onto the grass verge and possibly come to a stop courtesy of the hedge bordering the verge.

When I came to, I was about 200 meters down the road (slight downhill) on the other side of the road with people crowded around and a paramedic (car based) asking me if I was ok. As luck would have it, and it was luck, I hadn't hit anyone or anything. I think the car gently rolled down the hill, over the road and gently came to a stop bumping into the opposite kerb.

Paramedic, "I've called in an ambulance as we need to have you in hospital to work out what happened".
Me, like an idiot, "No I'm ok, i'll just go home, I only live a few minutes away"
Paramedic "Nope, hospital!"

Hospital, the way in was via A&E then onto the cardio ward having had an elevated troponin level.

I spent a week in hospital (that time), had a cardiac MRI which was great fun! It revealed that I'd got some myocardial scarring from the Chicken Pox event those years before. That scar tissue within my heart provided a pathway for arrhythmia.

When I passed out behind the wheel it was likely ventricular tachycardia and the euphoric weird calm feeling was likely hypoxia.

I came home the proud owner of a Boston Scientific duel lead ICD and no drugs.


December 2013 aged 43 (between Christmas and New Year)

I was in bed reading and my heart was thumping and bumping, which it was doing by then, on and off, when all of a sudden, THUMP. I wondered what the hell had just happened. It didn't hurt and after a little bit of thought I realised that I'd just been zapped by the ICD.

A bit of panic set in, wife called an ambulance as was the standing instruction and off I went to hospital again. A few days in hospital and a few further episodes including VT (Ventricula Tachycardia) and a new one, Torsades De Pointes. Made it home on New Years Eve with some Beta Blockers.

The Beta Blockers knocked the absolute wind out of my socks.


June 2014 aged 43

ZAP!, hospital another increase in dose of Beta Blockers. Since I'd started on Betas in late 2013 the dose was slowly increased, I think, to about 10mg (Bisoprolol) and on each increase, said wind was knocked out of said socks. They doubled the dose of Betas from 10mg to 20mg, which is a very high dose, most people are on 2.5mg to 5mg.


August 2014 aged 43

ZAP! Yep, more hospital, and then a transfer to the Royal Brompton from my local hospital in an ambulance. Attempted ablation surgery.
Beta blocker swapped to Nebivolol, straight onto 20mg, no messing, a similarly high dose. Also started on Flecanide, an anti-arrythmic.


April 2017 aged 46

DOUBLE ZAP!, more hospital, Flecanide was replaced by Amiodarone which is a very nasty drug. You need to be in hospital when you start Amio as it is so toxic.


August 2020 aged 49

ZAP!, more hospital, transfer to Harefield another ablation, during this one the AV node in my heart was accidentally burnt away, oops. Good job the ICD does pacemaking.

Now pacemaker dependant, it was quite difficult to contend with the fact that the two electrical nodes in my heart, one via the pacemaker, the other the sinus node were fighting each other. The top half of my heart sped up as it should have done but the bottom half controlled by the pacemaker didn't , that stayed at 50bpm. Any form of exertion, even climbing the stairs left me feeling very poorly indeed.

A quick trip to the hospital, oops, the rate response function was not enabled on the ICD. Switched on things are better but for any excercise it takes a good half hour for my heart to "warm up" now.


September 2021 aged 50

ZAP! More hospital, new drug, Mexilitine. Not a nice one I describe it as a mixture of bleech and highly corrosive rocket fuel, that stuff burns and plays havoc with the guts.


June 2022 aged 51

You've guessed it, ZAP! No hospital, no new drugs.

Between the event in Sep 21 and the event in June 22 we moved from Maidenhead up to Chesterfield (or near to it). Now mortgage free, I started my own consultancy business (one man band) and am doing ok and avoiding as much stress as possible.

Moving and downsizing was a great step and highly recommended if you are able to. Despite my health, we waited until our youngest was off to university.


November 2022 almost aged 52

And very timely, tomorrow, off for a cardio CT scan at the Great Northern Hospital in Sheffield. New hospital, new cardiologists, I wonder if they have any new tricks up their sleeves.



Top tips:

Anxiety, it is a tt, it comes and goes but you do get over it until next time.

ICD shocks, don't hurt and they are over before you can acknowledge them. What they do for me is trigger a panic / anxiety reponse which is a bit of a tt.

Live your life.

PurpleTurtle

7,165 posts

147 months

Tuesday 22nd November 2022
quotequote all
colin_p said:
loads of interesting but quite scary stuff
There's me with my 'got slightly out of breath and one stent fitted' tale!!!

I know that A404 road well, always a spirited drive. Glad you are around to recount the tale, sounds like it has been somewhat eventful!

colin_p

4,503 posts

215 months

Tuesday 22nd November 2022
quotequote all
PurpleTurtle said:
colin_p said:
loads of interesting but quite scary stuff
There's me with my 'got slightly out of breath and one stent fitted' tale!!!

I know that A404 road well, always a spirited drive. Glad you are around to recount the tale, sounds like it has been somewhat eventful!
Please don't let what I've been through diminish what you (and anyone else) has been through. The point I've clumsily tried to make is that despite things getting very bad and very frightening, you'll get through it and that you (or anyone else) is not alone.

NDA

21,787 posts

228 months

Wednesday 23rd November 2022
quotequote all
colin_p said:
I'm also a member of the ICD owners club and it is both nice and horrible to know there are a few others with one on here.

A very quick history of my heart history;
Interesting - that sounds like you've had quite a journey...!

I had 3 stents, then a bypass, then an ICD. The bypass triggered Dressler's Syndrome which was a bit touch and go at one point - the cardiologist said 'I think we could lose you' which wasn't great to hear.




pidsy

8,075 posts

160 months

Friday 25th November 2022
quotequote all
Thanks to everyone for their comments. Colin, you’ve been right through it over the years! I’ll PM you at some point - I have some questions.

Had my PET-CT scan at imperial yesterday. Fasting for 30hrs prior meant I wasn’t in the best of moods throughout the process but the scan itself was over in 10 mins.
They’re trying to work out if/why I have a trop leak - something that can be controlled apparently.

Still on for Monday morning - pre-op out of the way. In 72 hours I guess I’ll be a very different person to who I am now.
The lack of sleep over the past 3 weeks or so has taken its toll and the overwhelming fear of being on borrowed time has been tough. Really hard going.

I’m still not particularly worried about the actual procedure, more about how life will change afterwards and what my condition actually is.

They mentioned in the pre-op that as I’m very young to have this done, they’re hoping to use one of the lesser veins in my chest to run the wires in rather than the usual main one. I’m not sure what benefit if any that has but they can do whatever they need to in order to get this over with.

colin_p

4,503 posts

215 months

Friday 25th November 2022
quotequote all
pidsy said:
Thanks to everyone for their comments. Colin, you’ve been right through it over the years! I’ll PM you at some point - I have some questions.
Not really. There was a bloke on a cycling forum I used to chat with who used to go cycling with an external artificial heart, pump box, pipework and a hoofing great big battery pack. Balls of steel!

pidsy said:
Had my PET-CT scan at imperial yesterday. Fasting for 30hrs prior meant I wasn’t in the best of moods throughout the process but the scan itself was over in 10 mins.
They’re trying to work out if/why I have a trop leak - something that can be controlled apparently.
30 hours, blimey! Cannot offer anything on trop leak, but I reckon it will involve drugs.

pidsy said:
Still on for Monday morning - pre-op out of the way. In 72 hours I guess I’ll be a very different person to who I am now.
The lack of sleep over the past 3 weeks or so has taken its toll and the overwhelming fear of being on borrowed time has been tough. Really hard going.
No you won't, you will be exactly the same person you are now, well actually no, you'll be a cyborg. biggrin

As for feeling down, not sleeping and feeling fearful - All perfectly normal, time will heal and you'll get your life confidence back. It might take a little while, but you will.

pidsy said:
I’m still not particularly worried about the actual procedure, more about how life will change afterwards and what my condition actually is.
Life will be the same, but with more drugs!

They can carry out the implant when you are conscious, apparently it is quite a good watch on the cath lab tv screens. I'm a big baby and requested that I was knocked out.

pidsy said:
They mentioned in the pre-op that as I’m very young to have this done, they’re hoping to use one of the lesser veins in my chest to run the wires in rather than the usual main one. I’m not sure what benefit if any that has but they can do whatever they need to in order to get this over with.
Sounds like a good plan, leaves room for future upgrades. tongue out

I have two leads and one of them apparently has some "noise" on it so that will need to be replaced when my current ICD is. I believe that removing the leads is quite risky and they prefer to leave them in place and just fit another.


It is a huge thing to have to deal with right now, looking at the unknown before the op and before they have worked out what the trop leak is, but you will be ok. In the meantime, it is perfectly acceptable to be stting yourself a bit. As I've said, I'm a big baby and if I can do it, you will piss it.

Any questions, please ask, no matter how silly you think they are, they are not, just ask.

NDA

21,787 posts

228 months

Friday 25th November 2022
quotequote all
pidsy said:
. In 72 hours I guess I’ll be a very different person to who I am now.
The lack of sleep over the past 3 weeks or so has taken its toll and the overwhelming fear of being on borrowed time has been tough. Really hard going.

I’m still not particularly worried about the actual procedure, more about how life will change afterwards and what my condition actually is.
Try not to worry - I've been through it (in my 50's) and my life hasn't changed a jot in terms of outlook - or much else to be honest. I don't smoke anymore and don't eat many chocolates or crisps. smile

I know everyone is different and that our views on our own mortality are very different. At least your issue has been caught by the specialists and now you'll have a long and healthier life.

pidsy

8,075 posts

160 months

Monday 28th November 2022
quotequote all
Well, it’s in.

Had a 2 lead system in the end. Took just under 2 hours.

Got quite a cut under my collar bone - which is now incredibly painful. I feel very beaten up but it’s done so I’m very glad. Great team in the cath lab at Watford - can’t fault them in any way.

Paracetamol (lots) over the coming week and my chest should calm down.

My unit isn’t set to any particular parameters as yet - they just want to see what it’s having to do over the next 4 weeks then they’ll implement a regimen based on that.

colin_p

4,503 posts

215 months

Monday 28th November 2022
quotequote all
pidsy said:
Well, it’s in.

Had a 2 lead system in the end. Took just under 2 hours.

Got quite a cut under my collar bone - which is now incredibly painful. I feel very beaten up but it’s done so I’m very glad. Great team in the cath lab at Watford - can’t fault them in any way.

Paracetamol (lots) over the coming week and my chest should calm down.

My unit isn’t set to any particular parameters as yet - they just want to see what it’s having to do over the next 4 weeks then they’ll implement a regimen based on that.
Welcome to the cyborg collective beer