question

[Tommyann]

why do they refuse to carry out any more procedures when It’s known I have a enlarged left ventricle, what is the reasoning behind it , it was never explained. As before hand when cardio version failed after 24 - 48 hrs cardiologist stated there was other procedures could be done eg ablations etc .once when they realised I had a enlarged left ventricle, oh there be no more procedures done, medication only to try and control this .

[Desanthony]

You should have asked them that at the time. Never be afraid to ask questions of consultants or other medical professionals. Although some of them may still think they are gods they are not and should answer your questions - no matter how silly you think the questions may be. If you don't understand the answer as it is full of medical jargon then ask them to explain again simply so that you do. Obviously the person who said you could have further treatment had either not read your notes correctly or had forgotten about your other heart condition momentarily. So had mistakenly told you that you could have further treatment as a cardioversion which put you into AF even for a short time would point to an ablation having some success later.

Do you have a cardio nurse you could speak to who would be able to explain things to you? If not you need to try and see your consultant again or get a telephone consultation with him or one of his team to explain things to you or make a routine appointment with your GP and discuss it with them. It may be possible for you to telephone your consultant's secretary at the hospital and see if she could ask your consultant and could then relay the answer to you.

I hope maybe someone with more understanding of this comes along and can help you and you are able to contact your cardio or EP's team and get a better understanding of this.

[Tommyann in reply to Desanthony]

Thanks Desanthony I think I was bewildered that I even had the first procedure, when I had the heart echo. Scan At least a month before and still had the cardio conversion , if they already know procedures don’t work with my other heart problem .

I’ve come to the worrying conclusion my heart scan wasn’t read , and I’m very lucky I didn’t have a clot that was blastered by the cardio conversion which was the point of the heart scan in the first place to check , I was told then. I think I asked the question and it was skirted round and at the time I felt so unwell and exhausted , picking up the bug in hospital I must of let it slide r they spoke in medical lingo I didn’t have the know all.

It’s left me in a place of great distrust of the medical Team

[Desanthony in reply to Tommyann]

Yes unfortunately it could be that the scan wasn't read correctly or by the right person and/or wasn't passed on. You would hope this wouldn't happen but I know it does which is excactly why I have asked for all copies of test results and letters to be copied to me. Then I know it has been sent out and can if I want discuss with either my GP or consultant as should have had it ad read it too. However about 15 + years - maybe 20 years ago now a letter was sent from a consultant I had seen and was just put on my file and not actioned. I only found out about 18 months to 2 years afterwards when I went back to my GP to say that I really needed treatment or something done. The letter had given a change of medication and asked for a follow up consultation which had never come about. There were also mistakes in the letter which made me wonder had the consultant got me mixed up with another patient when writing up the notes too. We really need to be so pro active with these things and ensure that things are followed up.

[BobD Volunteer]

Enlarged is a slightly confusing term I think . What it means is that because of beating too fast or too irratically for a long time the muscle has built up , as any highly worked one will. At the same time as being "fatter" the muscle can become stiff and unyealding meaning it can't pump so well . This makes any kind of work within the heart very difficult.

That is my take on things but not a cardiologist. just twenty odd years in the AFA and lots of lectures etc.

[Tommyann in reply to BobD]

Thanks BobD such a great description I understand 100%

Which starts me thinking if this is the case why was AF not picked up a long time ago I have complained for years about these symptoms and was told oh it just a dropped heart beat it do you no harm.. Teenage years. And was put on a beta blocker and blood pressure tab 29/30 yr old to slow my heart down as they said it beat too fast. And that was that no mention of A.F.

[Blearyeyed in reply to Tommyann]

If this has been a long term cardiac problem , it could be that the AF wasn't present all the time you've had it , but AF eventually developed after years of the heart trying to manage the symptoms of the other problem.You can begin to have new Arrhythmias like AF develop over time if you already suffer with a chronic health problem that affects the heart or Autonomic Nervous System.

Often other health conditions affect which types of treatment are suitable for you , rather than a person whom has AF alone.

And the success , or effect of the first treatment you had on your enlarged heart may have also made them amend their decision to do other types of treatments because they were no longer appropriate for you as an individual with your new cardiac health needs , rather than them making a mistake in the first place.

It doesn't necessarily mean that you had something which was overlooked all those years before , but that AF wasn't there to find and was only triggered more recently. And that the first procedure they tried proved that risks of trying other treatments they had considered could outweigh the benefits so they have chosen not to try them.

It's worth contacting your Cardiac Team by phone to get the email address, then email them asking for some more clarification about their decisions . They should send you an explanation that will help you to get the history and decisions they've made straight in your head , and help you in finding out what may help you moving forward.

Take Care , Bee

[BobD Volunteer in reply to Tommyann]

Sadly it is only very recently that GPs have started to recognise AF and many people, especially ladies were fobbed off with "anxiety" or hormones. I know now that my AF probably started about forty years ago (I'm now79) but was missdiagnosed until 2004 when I moved house and GP. My new GP had a mother with AF so understood what I was describing. Fortunately for the first twenty years my AF was alcohol triggered so going T total delayed the worst symptoms for many years.

[Buffafly]

You might find the info on the BHF website, also you can phone a BHF nurse.

[Buffafly in reply to Buffafly]

I found a leaflet about ‘enlarged heart’ when I looked up ‘enlarged ventricle’. I believe Slidingdoors99 had an enlarged heart but was able to have one ablation - if you look her up you can follow her story. It was not easy for her to find someone willing to try it.

[Tommyann in reply to Buffafly]

Will do Thanks Buffafly

[Desanthony in reply to Buffafly]

Good idea buffafly those nurses are good as is the AFA helpline

[JOY2THEWORLD49]

Hi

It means your heart is structurally abnormal.

I can't those either but I'm fine on meds.

CCB for controlling my Heart Rate at rest.

BB low dose for controlling my BP.

Accept that they are looking after risks.

cheri JOY. 75. (NZ)

[Silvasava]

I was diagnosed with Dilated Cardiomyopathy, after one cardioversion which only worked for a couple of hours I was told I was not suitable for any further interventions and would remain on meds. My Afib doesn't bother me as I think I've had it for many years, it's rhythm not rate

[ozziebob]

Here's the free BHF cardiac nurse helpline mentioned by others ...

bhf.org.uk/informationsuppo...

[Tommyann in reply to ozziebob]

Thank-you ozziebob