Hospital problems

[SGEB73]

Hi,

after a CA in 2014 i had an ICD fitted. No real problem till last year when rputine scan showed EF drop to 35%. Spent the last year having tests,including a trip to Harefield for an MRI in June. Ive heard nothing at all from my consultant,then last week i got a copy of a letter she sent to my GP saying they have diagnosed Ishaemic cardiomyopathy,and requesting i be prescribed Etresto on top of everything else i take. Ive had no direct message,ie a phone call,letter or appointment with my cardiologist to explain any of this,or anything to do with the medi ation,which ive still not actually had a prescrpition for. On top of that,Harefield requested my own hospital check my ICD after the MRI, which they did Monday. The technician said there may be any issue with the battery,would call thecompany and ring back,although he said all the downloaded information was fine. He called this afternoon to say that although the last time they checked the battery it said it still had seven years use on it, it has now all of a sudden dropped to a max of three months,and that ive now got to have it changed within a month. I dont understand why this has happened out of the blue,why ive suddenly got a quite serious heart condition when nothing has shown up before,and frustrated as to why they never seem to be in any hurry to keep me updated abput my own health. Lots going round in my head at the moment

[Hidden]

Hello

So sorry to hear the difficulties you are going through at the moment it must be so frustrating and quite an anxious time

There is nothing worse than a lack of Communication it just adds to what feels like an uncertain stressful time

I would contact my Consultants Secretary and explain how you would like an explanation even if it is a telephone appointment as you need the answers to what is happening

I would also contact Harefield and explain to them what has been said regarding your battery and you are very worried as it has been said it needs changing within a month and you need someone to get back to you over this and explain the stress it is causing you

I would also phone your Doctor and put all this to them to and ask if they can also email the Consultant or speak to them on your behalf

I know this sounds an awful lot to be trying to contact but the way things can be at the moment when we find ourselves in these situations we have to start trying to get people to take notice

I know you may feel you have been forgotten but part of the problem I think at the moment there is that much work load that these Consultants and Surgeons are dealing with they are sometimes having their own workload and having to cover other Consultants workloads to

I know that does not help you but wanted to just try and let you know that it is not because you don't matter you do and that is why you should make those calls and make sure you are listened to

When my head is so full of so many things I feel everything is going round to quick for me to keep up with I make a list starting with the most important and working my way down to the least important

Then I take one at a time and start dealing with what it

Once I have written it down it helps to slow it down in my head and let go a bit as I can see I have a plan and what I need to do

I hope you get this sorted and you will let us know how you get on x

[Wodney1966]

Hi I've got s icd fitted and same happened to me told me still had 55 percent on battery than got phone call to say down to last 15 percent had a month to get battery changed I've got dilated cardiyomyapathy n heart failure 🙃 😅 🙂

[SGEB73 in reply to Wodney1966]

Did they give you any explanation as to why that happened ?

[Wodney1966]

No they just said battery had run out was changed within 3 weeks

[Brian1974]

Hi SGEB73I Have been having the same problems and think there is a lot of pressure on the nhs cardiology department as I know I am very lucky to be here after what was first thought to be a chest infection 3 visits 3 different doses of anti biotics and 2 strong doses of steroids.

om the 4th visit after all this i had to get a last minute app on a friday i was seen by a stand in travelling Woman gp who no doubt saved my life as she had me in hospital 30 mins later with 150+BPM and told later after it stayed like this for another 3 weeks and had a pump inserted to help as i had an Acute event and chronic heart failure where my enlarged heart needed help and fluid had built up to the point my lungs could not function (was the Acute event)would not have been here on the monday to make an appointment then and was in for months and have been in again after more scares with chf due to changes in meds ,but what i meant is that i was very closely monitored for a while and EF went from 12%to24%had slowly got better ,but lately after problems with medication changes was called by chemist to tell me it had changed or to be changed again .

I only know this because i had to chase up the info myself my normal gp i wont even go into whose secretary thought she was a gp told me to contact cardiology still could not get answers had to go tohospital and get info myself which is very worrying and is stressing me just now writing this but i have another scan next month so i will let you know,hope you are ok.

Brian