So I went to meet the surgeon - the good news is he is an utterly charming and lovely man. He had time, he asked questions, he did his best to allay my fears. The NHS statistics suggest he is one of the best.
He said that the increase in size is certainly something we need to be aware of but could also be attributed to the margins of diagnostic error. With my history and as things stand he said he would not suggested surgery at this point in time. He wants me to come back for an MRI in 12 months time.
I asked him a million questions and I know for sure he has me down as a highly anxious obsessive patient (which of course I am). I asked him why the mortality rate at the Cleveland Clinic appears to be 0.06% while in the UK it seems to be closer to 2%. A pretty significant difference from where I'm standing. He didn't really have much of answer and anyway it's a moot point as I don't imagine my insurers would be willing to fork out for me to cross the Atlantic when the time comes. He showed no arrogance (and I've met a few arrogant consultants in my time) and answered all my questions with empathy and good humour.
He confirmed that I am definitely 'in the waiting room'. I sort of knew it really, but my cardiologist - perhaps sensing my anxiety - used to be at pains to tell me that surgery may never happen. He also told me I had no stenosis which appears is not strictly true. The surgeon said he could hear it (?), that I have it, but it is insignificant. Now I feel a bit paranoid and think that nobody's telling the truth.....
My female cousin died suddenly of a heart attack when she was 20 (in the early 1960's) which he thought may be significant. I have long since convinced myself I don't have Marfans, but he told me that it is far from physically obvious in many people. So I'm starting to fret about that.
I was feeling pretty good when I came out until I phoned my mum to tell her the news. The first thing she said was 'are you drinking champagne?' (er, no, actually. It's been confirmed this week that I will definitely be having OHS in the not-too-distant future), then she causally dropped into the conversation the fact that another female relative (my granddad's sister) had also died of a heart attack before she was 20 (this would have been in the early 1920's). Both women on the same side of the family. Anxiety levels rising again.
So I now sit here, typing this rambling message, not sure what to think. I was pretty buoyant til I spoke to my mum. Now I'm not quite so sanguine. In fact all the death anxiety is creeping back in. I know there has been discussion here on this issue, so I will go back and read those messages. Also went to my GP about getting referring for possibly some CBT. I really want to be able to push this to the back of my mind for the next 10 months or so, but I don't think it's going to be that easy.
Thanks for reading my story and thank you to those who take the time to reply.
mmmmm, in the 1960's you could have died from a chicken bone stuck in your neck and they would have said on the death certificate: "CAUSE of death: Heart stopped!"...so the cause of death of relatives may have just been completely unrelated, seriously. Secondly, its not brain surgery....its heart surgery, and they can fix you, so yes, have a glass of bubbly. Many people don't know what they have wrong with them and live in ignorance. We know, and can plan and adjust lifestyle and for the vast majority it all goes very well. Also, its not just about aortic root diameter, which can vary according to how talland big you are etc, but its about many factors, not the least of which is your abilit to tolerate exercise ( I was becoming more breathless...but only when walking up steep hills..puf, puff, pufff, and some peopekl get to the point where they can harly walk, so for that I am grateful), it also depends on LVEDV (left ventricular end diastolic volume), ventricular wall thickness, blood velocity through your valve, and so on and so on and so on. Keep fit, watch your weight, manage your BP, and you may well out live all of us without ever having a valve replacement. If you do need a valve, there will be some indicators for the surgeon, and he will explain it all. He won't operate on you if you don't need it, but he has some baseline information now, and just have your regular checkups. I had checkups for over 30 years, and I could often explain the results to any new doctor better thany the could. I have outlived three cardiologists, and two general practitioners and I have specifically selected a highly experienced surgeon and cardiologist who have a subspeciality specifically in aortic valves, and I will go for annual checkups because I just like to have a chat and have they have a poke and a prod and look at a cardiac echo and we sit down and look at the comparisons and the past results and the current results and hopefully they can pick up any changes, but already LVEDV has normalised, the muscle wall thickness has normalised, the new aortic valve is working well, the breathlessness on exertion has gone, and its all gone to plan, as it does for the vast majority of us in the heart valve club......take care, be guided by the experts who know your specific circumstance, be wary of statistics, and enjoy every day
