Question for anybody who has had an ICD/pacemaker fitted.

I have heart failure diagnosed 20 months ago and a VT 9 months ago which took me to hospital for 10 days. The long stay was due to they wanted to first investigate the stent fitted 8 weeks before so had to wait for a free spot, which took 5 days. The stent was fine so they decided I need an ICD/pace maker, just in case of a VT again. Again, I had three ops cancelled due to other emergencies. They said I was being kept in as if I was sent home, the wait would be even longer and that a pacemaker is basically an outpatients op.

Fourth time lucky and whilst in the pre-op room, several recovering there said the surgeon was the best and that they were just waiting for a lift home.

I had the op at 14:00 and was out 75mins later which the staff nurse said was very fast. I won't go into the op itself as I still get nightmares about it.

They said they would keep me in due to excess bleeding due to a haematoma and the widespread painful bruising down the left side and across the chest which they gave me morphine for though it does not effect me, as I told them.

The next day they wanted to check the leads were ok and I was x-rayed. I did have an argument at first with the radiographer as she insisted I stretch my left arm above my head, something I had been told not to do but luckily someone more experienced came in and agreed with me.

The pacing technician also checked it was working ok the next morning. So is that normal if people are sent home the same day?

I was discharged after two days with a leaflet saying if any problems ring Monday to Friday the pacing unit.

Since the ICD/pace maker I have had swollen feet, chest pains, breathing problems & been worse than before the unit went in. I was told it can take 6 months to a year before it settles down and this was before lockdown.

So question was, anyone else kept in after ICD/pacemaker and did the symptoms such as breathless, swollen feet and chest pains take a long time to go? I have not seen a cardiologist since and don't have an appointment.

The lockdown has made things feel worse as I am hundreds of miles away from any family and on my own.

[Thanksnhs]

Hi my experience getting my icd fitted was not good, when I was waiting to go in the theatre staff said the person putting it in didn't like his patients to have to much sedation, really!, although it was not anywhere near as bad as the angiogram, I break out in a sweat when I think about it, I did go home that day and the only after effect I had was a frozen shoulder, they said I had moved my arm too much or too little, it proved its worth a year later when I had an appropriate shock, If it hadn't been fitted I wouldn't be writing this, I was given a home monitor which downloaded straight to the icd unit so I only had to go once a year to the hospital, mabe the pacemaker bit needs adjusted,mine was just an icd, I hope you feel better soon, I found the reasurence of it being there great char

[Hannah-Hay in reply to Thanksnhs]

I am having ICD fitted 2nd Sep & not looking forward to it but it is supposedly my last resort. I am going to have a general with overnight stay. It’s usually sedation & out same day. Was interested to read your experience. Family & friends are all saying to me to not have negative thoughts about it but to think positively that it will work & I can get my quality of life back. I am usually so active but too tired & breathless to do much. I’m usually a glass half full person but for medical matters i’m the opposite! Am hoping pacemaker=instant improvement but maybe that’s not what happens maybe it all takes time. 6 weeks of being careful not to raise arm above head I worry I will forget & just do it! Would be very interested in hearing your progress but of course course i know everyone is different. Glad you benefited from DCI when it gave you a shock. I imagine that it was a bit violent.

[Thanksnhs in reply to Hannah-Hay]

Hi that was the strange thing, the first I new about it was when the clinic phoned to tell me that it had fired at 5.30 am I hadn't even noticed! If it hadn't been for my monitor I would never have known it happened, my cardiologist had never heard of that happening before, but I am quite glad it did, I lost my driving licence for six months which I found very difficult, I have just had a transplant three weeks ago, so it's gone now, apart from that one time all was fine with it, it didn't really bother me at all, I suppose I just got used to it

Char

[Hidden in reply to Thanksnhs]

I didn't have a choice regarding sedation, I wasn't offered any until near the end. He was definitely in a rush as he was supposed to get me to sign the consent form but he forgot after he introduced me. That caused a panic when I mentioned it to the nurse at the door of the theatre.

When I was given local anesthesia the staff were bouncing around high fiving saying they were the A Team. The surgeon started to cut in straight away which made be yell out in pain. He asked what was wrong! He injected me again and started again before the area was numb and he wasn't pleased at having to wait. This is the reoccurring nightmare I have, nurses cutting into me and feeling it. I wake up heart racing and cannot sleep after that.

He carried on and then, without warning, tested the ICD making me jump as the heart felt like it was trying to escape. His reaction was to say to a colleague ' oh, he doesn't like that, does he' and continued with different strengths of tests. He also had problems with the leads and said I had a large aorta, which I assume by his tone was my fault.

He then did something else which sprayed him with my blood and he asked for pressure pads. and then left. He didn't say anything directly to me.

The sister said it was a quick operation and that he was flying off to his own country now as he only worked two days a week in UK.

My sister still says I should complain about that treatment and that from one of the ward sisters who injected blood thinner in my upper stomach instead of below the belly button, causing a large, painful haematoma which they x-rayed as it worried the consultant registrar.

I am actually considering leaving London after 31 years here and moving to Bristol as my uncle who lives there says friends of his have had the same operation and were out dancing again with a week. They are all 20 years older than me and I am now walking around, with a stick, breathless, muscular skeleton pains in chest and swollen feet being told by the professionals to be patient at now 65.

[Thanksnhs in reply to Hidden]

That sounds awful definitely worse than mine, it was my angiogram that was awful, if I hadn't been on morphine for the next 24 hours I would have been out the window with the pain again I think they rushed it it was at 6.30 in the evening, I think they wanted home, I am very small 8 stone and obviously have very small veins he was just push push pushing away and it was just about to blow, for the want of a better word on my wrist, never again, having said all my treatment since then has been second to none, I am 61,and hoping to recover well from my transplant to lead an almost normal life char

[Hidden in reply to Thanksnhs]

Morphine does nothing for me for some reason. I had it after a couple of other operations and after the ICD but it does nothing.

I was discharged with a letter saying what not to do with my left arm for 6 weeks and a pacing appointment after two months. My sister picked up the BHF booklets on ICD/Pacemakers & heart failure and these were of more help than any of the medics.

I discovered this Forum and it has been brilliant and given me a lot of advice and it is helpful but also worrying how there doesn't seem to be any common treatment or joined up thinking with different NHS Trusts having different standards.

I have an appointment with different hospital heart failure nurse in three months in an annex of the main trust hospital. Last time I was there it took three nurses 20 mins to take ECG as they said they hadn't done one before

[Thanksnhs in reply to Hidden]

It sounds like you have been very unlucky with your care apart from the icd and angio mine has been second to none, I am in Scotland, I had dilated cardiomyopathy and heart failure char

[bantam12]

I had a pacemaker fitted 6 months ago, done as a day case and pretty traumatic !! I had X-rays before I was discharged and back next day for pacing check. Had horrific bruising which took weeks to go and still get odd stabs and pains in the area.

[Hidden in reply to bantam12]

Ditto with the stabbing pains on both side of the chest. Actually the ones on the right side started directly after the stent.

I mentioned it yet again to the HF nurse in June and she said as long as they are stabbing pains, that was ok and to take painkillers.

[FeetheBookworm]

I had an ICD fitted 4 years ago after HF diagnosis with EF of 17% and removal of over a stone of excess fluid. This had to be measured so they could see how much fluid was coming off ... 😭😳!

I previously had breast cancer and have had reconstructive surgery on LH side. ICD had to go RH side so stayed in overnight. It wept for about 3 months and I had to have weekly checks at the hospital and the dressing changed. Bruising was pretty horrendous but the weeping wound was the worst part as somehow an infection had set in. Had to keep it dry for all that time.

I have bi-annual checks at the hospital - well April app is now early Sep due to COVID-19 but no problems since.

Fiona