U.K. based - NHS query

Good afternoon all, been reading this forum for a couple of weeks now, and I have to say it's all very informative and supportive. In particular I love the funny and motivational quotes at the end of each post. 

I know no one can answer for sure but I'm hoping someone might have some insight into the criteria for an ICD on the NHS. Apologies in advance for the lengthy post. 
I (46F) suffered a STEMI on 5th June and was released home 9 days later with an EF of 21%. Because I didn't realise I was having a HA the damage was already done so nothing could be done surgically. I feel really well physically all things considered and would stil be thinking I'd had the worst acid reflux if it wasn't for the paperwork telling me different! I immediately quit smoking and I'm on various medications. Emotionally and mentally it varies but leans towards positive most days.
However! I have still not sat in front of a doctor and discussed any options. I discovered these devices whilst looking up my condition. When I mentioned it to my nurse she said they didn't want to overwhelm me with information but that ICD was definitely a possibility and then the next time I spoke with her I mentioned that if the NHS couldn't do it for whatever reason I would look into going private, so could do with knowing sooner rather than later to get the ball rolling. She replied that wouldn't be necessary, and that they were also looking to see if there were any stent options once the swelling had gone down. I have an awful lot of permanent damage unfortunately. 

I've now had all my post discharge scans and am just waiting for my cardiologist appointment, but can't help but worry (especially at night) that I won't qualify for an ICD. From all I've read I feel one would give me the peace of mind to live my life again without fear. I don't want to read too much into the nurses comments, but at the same time the thought of having something so life changing is the only thing keeping me going at the moment. 

So after that overload of info about me, does anyone know of it sounds like I'm a candidate for an ICD? In particular on the NHS? 

Thank you


5 Comments

UK member here too

by Gemita - 2023-07-23 14:11:51

https://www.nice.org.uk/guidance/ta314/documents/arrythmias-icds-heart-failure-cardiac-resynchronisation-fad-document2

Jodie, firstly I am amazed you are still with us and I am so sorry to hear about your heart attack on the 5th June.  I see a STEMI (ST-elevation Myocardial Infarction) is the deadliest form of heart attack, caused when an artery supplying blood to the heart is completely blocked.  I note your EF was 21%.

Firstly please don’t worry about whether you qualify for an ICD.  After what you have been through your doctors will no doubt choose the best treatment to protect you and to help bring your Ejection Fraction back up to a safer level either with medication or with a CRT/defibrillator? pacemaker.  

My husband had an almost total blockage of his LAD (left anterior descending) artery and has successfully had three stent procedures (2 stents in the LAD artery and 1 stent in the RCA (right coronary) artery).  The near total blockage in the LAD artery was caught just in time.  You were not so lucky.  Both hubby and I have pacemakers (since 2018).

My sister on the other hand had a sudden fall in ejection fraction down to 16%  for reasons still unknown and has fully recovered with medication alone without any ICD or other intervention.

The indications for an ICD are usually a dangerous ventricular arrhythmia like VF (ventricular fibrillation) or sustained VT (ventricular tachycardia) which may have caused a heart attack, or if a patient has spontaneous sustained VT causing syncope or significant haemodynamic compromise or has sustained VT without syncope or cardiac arrest, but has also an associated reduction in left ventricular ejection fraction (LVEF) of less than 35% (heart failure).

An ICD would also be indicated in treating people who have a familial cardiac condition with a high risk of sudden death, such as long QT syndrome, hypertrophic cardiomyopathy, Brugada syndrome or arrhythmogenic right ventricular dysplasia or have undergone surgical repair of congenital heart disease.  I think those are the main indications (from NICE guidelines), see link above.  However, since you have sustained severe damage to your heart muscle causing scarring which could lead to potentially dangerous arrhythmias in the future, they will have to carefully make an assessment of your best treatment options and this stage cannot be rushed.

I am sure they are keeping a close eye on you and will give you as much information as you can manage when you are seen.  You are 46 and still young.  You have a good chance of recovering well once any blockage has been effectively treated.  

Please let me know if I can help in any way.  I send you lots of strength.  You will get through this, especially once healing has taken place and you have been stabilised prior to any intervention.

ICD information

by Gemita - 2023-07-23 16:39:26

Jodie, I attach a link from the Royal Brompton & Harefield Hospitals about ICDs and what to expect following implant which might be an easier read than the full NICE guidelines link I have already provided.   Both links need to be copied into your main browser to open.

https://www.rbht.nhs.uk/sites/default/files/Leaflets/Your%20implantable%20cardioverter-defibrillator%20(ICD)%20-%20Harefield%20Hospital%20-%20January%202023.pdf

Thank you

by JudgeJodie - 2023-07-23 18:44:50

Thank you so much, I looked at the first one and some of it made sense, most of it not so much! The second one looks easier to digest for a novice! I appreciate the reply and the information. Thank you. 
Im sure once I've sat in front of a doctor I will feel a world better. The rational side of me says they wouldn't send me home to drop dead, and I can surely only be improving with the amazing meds I'm on, and if they'd seen anything horrendous on my scans I'd have been called back or kept in the hospital. It's just that my rational side sometimes deserts me! The nights can be scary, long and lonely. 

It is complicated, I know

by Gemita - 2023-07-24 03:42:44

Jodie, it is complicated and it is hard to say for certain what they will recommend in the way of surgical treatment but you would appear to qualify for ICD therapy under the NHS with an ejection fraction of 21% and having had such a serious heart attack, especially at your young age. 

My sister is now 77 and at the time of her 16% ejection fraction/heart failure diagnosis in 2021, her NHS consultant told her they didn’t want to put her through ICD intervention while she was in such a weakened state and might not survive the procedure.  Therefore her initial treatment was medication alone.  In hindsight they made the right decision although we were all very worried for her well being at the time.

In your case it sounds to me as though they feel they can stabilise you on medication for the moment, allowing healing to take place and for you to recover before any further treatment.  Guidelines suggest anyway I see that there is a recommended waiting period of around 6 weeks after a heart attack before an ICD can be safely implanted but I know it will be a worry for you while you wait. Medication today can be very effective though in increasing an ejection fraction and stabilising a patient and your consultant needs to know what he is dealing with before going rushing in in any event.  

There are many members with ICDs.  If you go to far top right you will see “Q”, tap on it and type into the box ICD and it will bring up lots of posts which you can read at your leisure.

Thank you

by JudgeJodie - 2023-07-25 14:12:02

Thank you Gemita. I appreciate the reply and will keep educating myself on this fantastic forum. 

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