ICD Confusion

[Ria31]

My husband had a STEMI in August 2018. Unfortunately, he delayed treatment for 8 hours, thinking he was suffering from food stuck in his throat. He had a stent fitted. His first echocardiogram 4 days later revealed an EF of 39% and damage to the left ventricle wall. After a week stay in hospital where he was also treated to a bout of hospital induced pneumonia, he was referred to the heart failure nurse, who was great and was discharged from her care two weeks ago. In December 2018 he had a further echocardiogram which showed an EF of 40%. The three month follow up time came and went, and despite asking for it to be chased, nothing happened and we were advised that he was on the list but unlikely to be seen before July. . We had already cancelled one diving holiday in September 2018, but he was rather hopeful he would be okay for another dive holiday in April 2019 that had been booked for over a year. We consulted a dive consultant, who asked for a further echocardiogram, a Bruce Protocol Treadmill Stress Test and a consultation with a cardiologist. Despite now being 7 months post STEMI with no follow up consultant appointment, we paid for a private consultation. The treadmill test showed no problems whatsoever, but the echocardiogram showed significant thinning of the left ventricle wall. At first glance the cardiologist said the EF was 35% but said he had to do the full calculation. When we got this two weeks later, he reported an EF of 28%. Naturally, the dive consultant said he wasn't fit to dive. With such a poor EF, plus the recommendation that he was considered for mechanical intervention, our GP wrote to his cardiologist and asked for a follow up consultation. The GP told us 'not to worry, echo calculations are often wrong' and that he should go on how he feels and not the figures. Pointless having it then, eh? Anyway, we finally saw the consultant last Friday. He said given the results of the echo, that my husband 'qualified' for an ICD. Although my husband feels better now than he did for up to a year before his STEMI, his blood pressure and RHR are low (85/57, 58 bpm average), he is on the lowest dose of the magic 3 meds plus aspirin, he has no signs of palpitations or irregular heartbeat, the consultant said that the ICD is more of an insurance policy, but recommends he has it done. He said that the EF calculation was probably wrong, but when pressed for another echo (as the one done by the private consultant was completely different in approach to the previous two), the consultant said that it might return a better result, which would affect him qualifying for an ICD.

We are really struggling to come to terms with this, and are completely unsure which way to go. My husband is 60, no family history, BMI of 24, pescatarean low carb diet, non smoker, drinks very little, walks the dogs 3 miles a day (hilly terrain). We feel he was affected by a lot of stress running his own business, which has now been wound up. I think the list of possible side effects freaks him out, quite frankly, and he is really worried about a false activation which would affect his driving licence.

Has anybody had similar circumstances, and what are the considerations? It's been a really frightening time for both of us. Any help and advice would be greatly appreciated. Thank you.

[Hidden]

I personally believe the consultant has been very fair and open handed about your husbands treatment and diagnosis. My question to you both is "are you trying to convince yourselves there is nothing wrong?" and if so "why?" Heart defects do not have to be inherited and usually develop through illness, life style or natural occurring bodily defects and although the "suspect" reading may well be incorrect, surely it is better to err on the side of caution and probably why the consultant did not want to perform another test. I went through my whole life feeling fit and well although I did suffer immense stress and bullying at work. Nonetheless last May I still needed a triple heart bypass and again am now feeling fit and well - with the odd ache from my leg and the breast bone. Please do not worry although it is easy to say that, your husband is in the system and no one will let him go until they are satisfied that he is 100% fit again. I think about it all as an MOT test where some radical repairs had to be carried out but am fit and well again for the remaining mileage I hope to do! Let things take their course and always look on the bright side of life - many folk don't get the opportunity of a second chance!

No more diving until told he is fit and well again - the physical element is very demanding on the body.

[Ria31 in reply to Hidden]

Hi there. To be honest, I think we are both reeling in shock about the whole thing. It really didn't help when we asked about side effects and the consultant ran off a huge list of things that can go wrong - especially when the ICD is "an insurance policy", as he doesn't have a known problem with the rhythm, or have any palpitations at the moment. It's also because he feels so well. This is a man who other than picking up his asthma inhalers probably never darkened the door of the GP surgery for a good 20 years. He's a hard sell when it comes to keeping him on the drugs he is on, when his BP and RHR are through the floor. Fortunately, I think the diving element is now a given that he won't be able to dive again.

Thanks so much for your feedback

[Lezzers]

EF calcs are open to interpretation & dependant on who is interpreting the results. I believe the ICD threshold is 35% so anything above that is considered unnecessary for an ICD. My husband has an ICD which was fitted as a precaution. It's his own built-in paramedic, it may never kick in but it's there if it's needed. He's has been fitted since 2012 & so far it has never shocked him. He had to stop driving for a month after having it fitted which is usual if its fitted as a precaution, but it depends on circumstances. Also, he will have to stop driving for a time if the ICD delivers a shock but it would depend on whether an appropriate or an inappropriate shock is delivered. Personally, I'm glad my husband has one fitted, yes it can be an inconvenience at times but it might just save his life one day.

[Ria31 in reply to Lezzers]

Thank you for telling me your experience. It's really useful to hear from someone who had it fitted as a precaution and has been problem free for 7 years. The consultant did say he would need 4 weeks off driving after the operation and six months if it fired (appropriately or not). Your last sentence sums up my thoughts exactly.

[Shar28]

Hello. My husband has Dilated Cardiomyopathy. He too was a healthy weight, non-smoker, ate well and drank moderately, exercised most days but very stressed. His arteries are as clear. When he was diagnosed a couple of years ago his EF was 10-15% and after a few months on medication it was up to 25% as measured by an Echo and 35% as measured by an MRI. We were told Echos tend to understate EF and MRIs overstate EF. So he qualifies for an ICD. But he’s chosen not to have one fitted, because for him, he would be anxious about it going off inappropriately and the effect on his driving and motorcycling. Essentially for him, if he couldn’t drive or ride a bike it would make him ill. He just needs to be able to drive/ride. Sounds corny, but that’s how it is. An ICD would impact his quality of life, which is not the object of the exercise. Lots of people have an ICD fitted and see it as an insurance policy which they are happy with. My point is there’s no right or wrong answer when it comes to having one fitted or not, it’s what your husband feels is the most liveable-with option for him.

The cardiologists said two things:

1. The science to determine who is most a risk of an adverse rhythm is not there yet and so people are given ICDs when they may not in fact need one but it’s to prevent all those people who are are risk of arrhythmia from dying.

2. If my husband changes his mind he only has to ask and they’ll book him in.

I wasn’t happy with his decision at first and worried about him a lot, but I’ve gradually come to terms with it as I want him to be happy and well, with a good quality of life, physically and mentally/emotionally

He also needed to have Aortic Valve Replacement surgery with a mechanical heart valve and lifelong Warfarin. That was a “no-brainer”, even though the surgery was scary, so it’s not the thought of surgery or something being implanted that puts him off.

I suspect the Drs comment about the EF figure meant that with heart failure it’s more about how you feel and what you can do or can’t do that’s important not just the EF as it’s not a precise measure. Also, some people with a low EF can do surprising things and others with a higher EF can’t. Did they explain a normal EF is 50% - 65%?

There’s lot of people on here who have ICDs and you may find it useful to speak with the BHF nurse helpline (together or separately) to pick their brains or just pour out your concerns. There is information and a downloadable booklet on the BHF website too.

Sorry this is a long reply. All the best to you both.

[Ria31 in reply to Shar28]

Thank you so much for giving such a long reply - I think your and my husband sound like peas in a pod when it comes to their reasons for not wanting one. My husband is absolutely most concerned about the driving element, especially if the ICD fires. We live in a very rural place, with no public transport or train station within 15 miles, so the car is a must (and he is the worst back seat driver I know!). He also thinks the cardiologist is being overcautious, as he doesn't have any known inconsistencies in his heartbeat, so thinks why put him through this now, although he says it doesn't mean he'll never have one in the future. He is also in the process of interviewing for jobs, so worries about the time off element, and again the driving. Being a software architect, he also worries that the ICD software will be full of bugs and go firing off without reason. However, we have been looking at the latest technology that can monitor his heart rhythm continuously without being so invasive, as the ECG is only a 10 second snapshot. That at least would give me a bit more peace of mind. The one good thing is that he has resigned himself to holidays where I can dive and he can snorkel, so at least he isn't in too much denial about his ability to dive now. He is the laid back person, I am the worrier. He is "Que sera sera" and "I could get hit by a bus tomorrow!", I am "Let's plan". I do think we need to speak to the BHF nurse helpline, because our last visit to the GP when we got the EF 28% diagnosis through the post and were worried sick, ended in, "Don't worry!! Have your holiday and forget about it!" Thank goodness we still had the heart failure nurse at the end of the phone.

Thanks for your feedback - it really helps.

[not2worry]

My husband and I were avid divers - until he had a heart attack in 1999. He was 75 at the time. That was 20 years ago but all of his doctors said no more diving.

As you know the atmospheric pressure diving puts on your body is tremendous. While the physical activity of diving (suiting up, shuffling around on the boat, jumping in and fighting currents then getting back into the boat and reversing the procedure) the pressure on every square inch of your body is “squeezed” as you descend lower and lower into the water. Likewise, as ascent your body then needs to decompress as you come up. You don’t necessarily feel it but it’s happening.

If you do a 2 tank dive the affects multiply.

Most doctors we have consulted say no more diving. It’s also likely that no insurance company, life or travel, will cover someone who scuba dives.

We miss our diving! But we cherish life together more. Once we are unexpectedly faced with the consequences of CAD hard choices and reality sets in. But the opportunity of a second chance outweigh the forfeiting of a sport or chance in lifestyle. My husband just turned 85 and we reflect back on how we were able to enjoy scuba diving and the beauty of the underworld sea. Something many people never in their life time have experienced.

Acceptance of our new “normal” is hard sometimes but it does get easier with time.

All The Best From Across The Pond