ICD: Hi everyone, I was diagnosed with... - British Heart Fou...

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Charlesthru profile image
13 Replies

Hi everyone, I was diagnosed with 32% EF at the end of last year and was referred to have a ICD fitted but so far no action taken , I was wondering if it was common to be kept waiting so long.

13 Replies
Doodlegurl profile image
Doodlegurl

Did you have to meet a criteria to have an icd fitted, and did you meet it? My EF is less than 20% but I’ve only just met the criteria for a CRT-D device and have an implant date of 4th Aug as there are other symptoms that are included and need to be met, and also if you are asymptomatic or not. Please understand that I can only speak for the process I had to go through at my local hospital.

Charlesthru profile image
Charlesthru in reply to Doodlegurl

Hi Doodlegurl thanks for your reply, the only information I have is from my cardiologist who said he had referred me to have the device fitted but he made no mention of criteria, I assumed from what he said the decision had been made but maybe I misunderstood, having spoked to my cardiac rehab nurse she seamed surprised it was taking so long.

Doodlegurl profile image
Doodlegurl in reply to Charlesthru

I know it works slightly different at different hospitals. My cardiologist recommended me for ICD then I had to see someone from the icd team who confirmed that I fit the criteria for a CRT-D. I hadn’t heard anything over the next fortnight so I rang the hospital. Managed to speak to the operation coordinator. I was on the list for my nearest specialist hospital but another one on the same Health Authority had a shorter waiting time so I was offered the op there. So I’d look to chase a date up with your hospital. Good luck x

Charlesthru profile image
Charlesthru in reply to Doodlegurl

Thank's Doodlegurl, I'll get onto my cardiologist again, don't like being pushy but seams that's the only way to get things moving

Harveyone profile image
Harveyone

Hi Charles,I would definitely give your cardiologists secretary a ring and ask her where you are on the list.The device will eventually improve your condition.I waited about 3 months after consultation.

Charlesthru profile image
Charlesthru in reply to Harveyone

Thanks Harveyone, from what I'm hearing it seams the wait depends on how proactive you are, last time I talked with my cardiologist he just sent me a copy of the original referral letter he'd sent out and my cardiac rehab nurse just assures me it's in the system.

Qualipop profile image
Qualipop

My friend's husband waited 2 years for his but he and his wife refused to chase it up; they just said it would be because of the situation at the time. FInally he saw a new GP who got straight onto the hospital and he had it fitted just 4 weeks later. The hospital claimed his referral had been lost so you really do need to be proactive and chase them up. Phone the department or the consultant's secretary and ask why it's taking so long; enlist your GP's help. Politely but firmly pester them.

Charlesthru profile image
Charlesthru in reply to Qualipop

Thanks for your reply Qualipop, unfortunately my GP practice isn't much help at all and just seams to defer to my cardiologist even though I've been back to them numerous times due to my condition, I know things are difficult within the NHS right now so I've tried to be patient but from your saying about friends experience it does seam to be dependent on how loud you shout.

Qualipop profile image
Qualipop in reply to Charlesthru

Definitely. Keep it polite and pleasant but be persistent Stress anxiety and offer to take a cancellation at short notice. My friend's husband was having TIA attacks and after his pacemaker was fitted, was found to be having AF attacks which could have caused a stroke but they are of a generation that wouldn't dream of questioning doctors or hospitals. I'm afraid it's essential these days.

Charlesthru profile image
Charlesthru in reply to Qualipop

I'm afraid I'm of the same generation as your friend and definitely not a shouter but my quality of life is suffering quite badly because of my condition so I need to do something, also at the moment I'm lucky that I'm able to work from home but although my employer has been very good they are beginning to ask questions which adds to the anxiety.

Qualipop profile image
Qualipop in reply to Charlesthru

Then you really must phone and ask how long it's likely to take; whether there's anything you can do to hurry things, explain about your work and how it's affecting you and ask if they have a cancellation list.

eileeneileen profile image
eileeneileen in reply to Qualipop

my advice is to always do it by email directly to the consultant. Don’t waste your time speaking to secretaries or clerks .

Charlesthru profile image
Charlesthru in reply to eileeneileen

Thanks for your advice eileen, I'll try that, the closest I've got till now is the lady that manages the waiting list and she said that because the list was so long and that I was able to walk unaided ie without a walking frame or stick I was in her words on their radar but not a priority.

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