Another Newbie Joins the Club - Bicuspid Valve and Aortic Root replacement incoming

[Farfrae]

New here (64 year old male) and having discovered a heart murmur nearly 9 years ago I was diagnosed with a bicuspid aortic valve with associated dilation of the aortic root. Regular echocardiogram's revealed last year that it was getting time to operate.

All was going well and an angiogram was done and I was referred to a Cardiothoracic Surgeon at Swansea. Unfortunately my initial clinic visit got cancelled twice (on the afternoon before each time) which has brought about a delay.

Following a slightly stroppy letter (very gentle by my standards!) to the Chief Executive of the Trust I got a cal todayl offering to change me to a different consultant. So next Wednesday I have an appointment to see him; so all being well I shall be taking the first steps on a journey I'd rather not take!

I'm sure that there will be lots of questions; probably my next line of thought is going to be tissue or mechanical vave. Decisions, decisions.

[dawnz]

hello sorry to hear that your anxiety has been added to.

I hope the consultation goes to plan.

I am a newbie too as its a year since I posted anything. I have three leaking valves, and the pulmonary valve is also thickening, was advised last week that it will need intervention.

I will be following your story with interest, wishing you well

[Fredders]

Hi, welcome to the club! I was 16 when I was diagnosed with a heart murmur. I had my first AVR at 52 with a tissue valve and had my aortic root wrapped. Unfortunately that one started leaking and I had to have my second op at 59. This time I had a mechanical one and haven’t had any problems, including getting my INR levels stable.

I hope you get things sorted with your new consultant, I know how frustrating it is when things get cancelled, I had my second AVR cancelled several times, including one as I was about to have my pre med, but I eventually got there!

If you read through the posts you’ll see plenty of advice for pre and post op, including do’s and don’ts, but we’re here to help you through this as much as we can, so ask away.

Wendy

[Nic25]

Hi Farfrae, I very much echo what people have said and welcome to the AVR club! I (at age 50) had an AVR and aneurysm repair last month at St Thomas' in London, having also had a congenital bicuspid valve and ascending aortic aneurysm, and so have been spending January recuperating and trying to build my stamina back up. But generally it all went very smoothly I'm pleased to say (and I feel very lucky that it did) - I was in an out in a week - and I very much hope your appointment next week goes well. Fingers crossed!

If/when it comes to needing surgery, there are lots of threads/conversations on here around the mechanical vs tissue valve issue although ultimately it will come down to a personal choice as there are pros and cons to each. I personally went tissue and am more than happy to explain my reasonings if you want to DM me or something? But good luck and keep us posted how things are going, as we're all here for each other. Nic x

[Farfrae]

Thanks all, quite obviously I'm not looking forward to things but as there isn't any alternative well 'I just have to man up' basically.

One thing that does fascinate me is how people say 'oh you'll be OK - it's routine now'. To which my answer is, it may happen regularly but it's never routine. The fact is that by the application of millions of hours of research and science over the years (and the dedication of those doing it) the human heart can now be, with a fairly small risk be, stopped, repaired and restarted is quite astonishing.

The people behind the science, the unsung heroes through to the clinical staff and hospital cleaners really are not held in high enough regard (in my opinion) compared to those who are generally feted in the media. I stand in awe of these people who work, sometimes under ridiculous pressure, to save our lives. I feel very strongly about this and think as a society we really do have to start valuing science more and paying less attention to image, fluff and spin.

On that note I'll wish you well and pop back from time to time for an update.

[gal4God]

I’ve always had a tissue valve and it’s been awesome.