British Heart Foundation

WAITING FOR OP

I was diagnosed in February with severe regurgitation to my aortic valve and a TOE procedure in May confirmed my valve is bicuspid and I need urgent treatment. It's now six weeks since I was told by the hospital that my operation is urgent and despite phone calls, emails I still don't have a date; need an angiogram in advance of the operation.

Anyone have suggestions of what I can do to hasten the operation as I hate feeling tired and lethargic all the time.

6 Replies
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Hi there - sorry you're feeling so tired and lethargic, it must be making the wait before your surgery even more difficult. Sometimes it's easier to give the department who handle the day case angiograms a call to see what their lists are like and how long they think you'll be waiting (or you may even be already listed).

Once your doctor has reviewed your angiogram they can then start to plan your surgery - it's always worth checking what their 'urgent' timeframe is so you have a better idea. In the meantime, it's important if you have any changes to your symptoms of if they get worse to report these back to your doctor.

Take care,

Chris

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Update on my previous post is I now have the angiogram next week and follow up appointment on 18th Aug with the cardiologist.

So from being told in mid May that the op is urgent it will now be 3 months from that date until I can even meet to discuss treatment options. No doubt there will then be a further waiting list from then until I can have the op.

Realistically it wont be until the Autumn until the op; at least 4 to 5 months since I was told it was urgent.

The GP has now signed me off to work shorter days as I'm exhausted all the time. I'm also a single parent bringing up an autistic daughter that's just about to leave school and are the main carer for my ill elderly mother that lives a four hour drive away.

It seems I have to live with this constant anxiety regarding the operation for the long term, noting that I had an initial MRI in Oct last year but didn't receive the follow up letter advising I have severe regurgitation until Feb this year.

Are these delays normal? Do I just put it down to lack of NHS funding?

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Hi.

I'm day 9 from aortic valve replacement surgery.

I didn't get any help here until I actually contacted the cardiologist. Directly by phone and email. The Secretary replied instantly by phone. Do this ASAP if your feeling very concerned and physically too weak. They have me my date over the phone. Had Angiogram results too.

Soon you'll have a day for tests. Blood, ecg xray. The surgery Date will be close within 4-5 weeks.

I rested allot, esp lie down flat totally relaxed and Use energy for a purpose otherwise you'll feel burnt out next day.

what helped was changing my diet so I lost weight prepared fit for surgery. On plant based diet. Lost 8 kilo in 4 weeks.

Eat healthy daily. What might help take vitamin k2, 100mg +. Helped me boost energy a bit. Also vitamin b complex or b50.

If not eating enough green vegetables.

Hope this helps.

Good luck.

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Still waiting. Been on the waiting list for 15 weeks for what they tell me is an urgent operation. Thoroughly fed up and dis-spirited with it all!!

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Hi Sarum, I waited 10 months for my 'urgent' mitral valve repair op. I get the impression this is quite normal. I understand your frustration and I got quite dispirited too. When my symptoms got really bad I was put on water tablets and Losartan when I had a meeting with the surgeon which made a massive difference to my quality of life. I was even able to exercise a little to build up fitness before the op. Perhaps see your doctor and tell them 'as it is' hopefully they can prescribe something to help you.

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Thanks Shopgirl but why tell a patient they need an operation urgently and then expect them to wait a year?

Just heard back from the hospital and operations are booked for the next 3 weeks. That means that they will now miss the standard 18 week wait which is for routine operations.

If this length of wait is standard why can't they be honest and tell patients up front how long they have to wait?

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