Cancelled mitral regurgitation op

[honey1958]

Good evening all. Any advice please? I was told back in June I needed mitral valve repair or replacement.

Having been given 3 dates for surgery all cancelled I was then told they had forgotten to refer me to a multidisciplinary team meeting to confirm operation.

I have now heard back that the team has met and decided the op is 'not in my best interests '

It has not been explained why and I have been referred back to cardiology. My next appointment there is May 2004.

I am relatively well at present. I do have many ectopic beats and a degree of heart failure enlarged heart and pulmonary hypertension. Prior to 2 ablations had severe atrial fibrillation.

Does anyone know why an op would not be in my best interests? Was told in June if the valve was not dealt with my heart would deteriorate. I am 65 years old.

Thanks for reading

[francesw47]

Hello Honey I am sorry to read of your situation. You seem to have been left in the worst of all worlds . Its possible that your GP does not know the reasons why you were considered unsuitable for surgery, Its also possible that the cardiologist you normally see was at the MDT so may have a more comprehensive answer. You could try calling the cardiologist secretary or see if your GP will pester the hospital to find out what is happening. At the very least you deserve a conversation explaining their thinking to you. Personally I think this a dreadful way to communicate with a patient, but then so much seems rushed these days. Please persist until you have an explanation and a forward plan....leaving you without any kind of discussion about future treatment is also, IMHO, pretty poor. Please let us know how you get on.

[Blackcatsooty in reply to francesw47]

Heart ops are a pretty major event. And recovery is long. Not something to be taken lightly.

I wonder if your consultant thinks the disturbance to your life is not worthwhile.

Telling you that you need an op then reversing the decision is bad enough, but the lack of communication is disgraceful.

In my area a big effort has been made to sort out cardiology departments. The outcome is good….annual checks now run very smoothly without the need to refer to consultants, results are advised to me within minutes. When I needed an op, three years ago, consultant moved very fast to contact me. I got my op and now recovered. But I was very unwell indeed at the time.

Please try to enjoy your life whilst you feel OK.

Best wishes

Sooty

[honey1958 in reply to Blackcatsooty]

Thanks SootyI hope you're right that as I'm currently relatively asymptomatic it's better left for now and I will try to get on with life while I can.

But then I wonder if they think as I have other conditions it will cut the waiting lists if they turn me and others down!

Good you are now getting great care x

[Blackcatsooty in reply to honey1958]

Cardiac won’t defer you because they are busy. They will however delay heart ops being done prematurely.

They will try to avoid operating when you have other issues because the other issues might make the heavy anaesthetic or the major op dangerous.

The NHS is under pressure but they are pretty wonderful when your life is in imminent danger.

Sooty

[honey1958 in reply to francesw47]

Thankyou FrancesI was told it was the consultants decision but to be phoned with the news whilst I was in Smyths toy shop was not the best!

Think I will wait for a copy of the letter referring me back to the cardiologist and see what it says.

Then make an appointment with him privately if necessary.

No point in contacting surgeons secretary she is more useless than a chocolate teapot! Aneurin Bevan must be turning in his grave at.the state of the NHS today

[Hidden]

Hi, It goes without saying it's not a good situation you've been put in, whilst there may be a reasonable rationale why the decision has been made, the lack of communication will only cause doubt and concern on your part.

The question why the op is 'not in someone's best interests' is one I've come across first-hand, and I see it mainly as the 'risk factor'. It's feasible that they feel the risks outweigh the positives at this time, obviously I'm just guessing, but, your other ongoing issues could have a bearing in the decision. It could well be a temporary position to be reviewed at a later date.

I'm slightly different as I've already had 3x Valve Surgery, but, not long after the last in 2014, my Cardiologist discussed with the Surgical Team options for further surgery and was told' I was best left alone'. Hence, constant monitoring over the years.

Best Wishes

[honey1958 in reply to Hidden]

Yes Heedio it's all about the communication which has sadly been poor.It's so hard with multiple heart issues. Over the last two and a half years I've been told the atrial fibrillation was due to leaky mitral valve. Then that he atrial fibrillation has caused the heart failure. Now it's supposed to be the heart failure that's caused the leaky valve?

Good you are being regularly monitored x