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Permalink Reply by John French on January 30, 2012 at 19:49

Mark - sounds like you have a lot going through your head right now. Don't worry what others think, this is about you and what is right for you.

As far as I am aware in the NHS it is the cardiologist and surgeon that decide when you have hit the thresholds for surgery. I waited 2 years before my surgery. When I was diagnosed (I was 44 at the time) I had mild Aortic valve regurgitation (BAV) and an aneurysm of the aortic root measuring 5.2cm. My cardiologist had 5.5cm as his trigger for surgery (some have 5cm) and I hit that in Oct 2011 when I had the surgery.

I was lucky that I had no symptoms so really I was just being screened to measure the increase in regurgitation, aneurysm and any knock on issues on my heart.

Sounds to me like in your case your quality of life is already impacted by the condition so would make sense to push your specialist to weigh up the risks of delaying the procedure. But ultimately it is their decision to proceed or not unless you have private healthcare.

I see you are London based - which hospital are you refered to ? I was seen at St George's in Tooting as I am SW London based.

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Permalink Reply by Christopher Doherty on January 30, 2012 at 19:49

Hello Mark,

First and foremost, keep your mind right; this is an imperative. (Easy for me to say; I did not have to stop working and during the surgery and recovery period, I had no decrease in income; I only had to give up being a soccer referee. Still, you must keep your mind right.) I was diagnosed at 38 with a BAV. At 43, I had the surgery and I am now 64. When I got to the point of where you are physically (short of breath while walking, tired, and spontaneous sweating while sitting), I reported those symptoms to my cardiologist and after he listened to my heart he said, "It's time." About two or three months prior to the pronouncement, a MUGA Scan showed a ejection fraction decrease from 70 to 66, significant. Perhaps, you might consider a second opinion given the symptoms you are displaying.

The great news: I was able to resume my referee duties and continued to do so until I was 58. I only retired due to a field accident in which I suffered a torn rotator cuff. The surgeon said the next tear will not be repairable and I retired. I take Warfarin Sodium and that bothers me sometimes and the needle jabs suck, the price I pay for breathing and I am more than willing to pay that tab. When I first got the valve, the ticking drove me nuts; now, I cannot hear it. But, one thing I do know, like a Timex watch, "It takes a lickin' and keeps on tickin'"

P.S. As far as what others think, they can kiss off. Just because you don't look sick, some jerks think they have the answer. They can KMA!

Best regards

Christopher

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Permalink Reply by Mark on January 31, 2012 at 10:11

Thanks for the advice guys. I'm happy to go "mechanical" at least it will last longer than me. And my darlin' old Mum has been on Warfarin for years and years and the only problems she has are bruises when she totters off and bangs into things. She's manages perfectly otherwise. I do have a lot of deep rooted "anxieties" I will admit to this. For ages I complained about something not feeling right with my heart. No one listened. Then I was admitted into hospital in a right old state and they kept me in for over a week with what they thought was Pneumonia and Asthma, 9 days of asthma treatment, steroids, and antibiotics. The asthma medication did not help at all, and a few months after being discharged and back to work, I got sick again, and found out I have a heart condition. And stopped the asthma treatment completely. I am finding it hard to trust my doctors, and their judgement. I'm sure if I was able to flash £25k in front of their faces, they'd pee themselves in delight, I would be fixed in a week, then I could forget it all and carry on with my life as normal, ticking, clicking and thumping all the way. The surgery doesn't scare me at all, it's the waiting, and hoping to god that something isn't missed should I become unwell again and it all be put down to "anxiety" I fecking hate that word. I have a load of appointments coming up anyways. Until then I am gonna get my bloody bike out of the store, pull myself together and go for a ride, dodgy ticker or not !!!!!

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Permalink Reply by Madeleine M on January 31, 2012 at 12:00

I understand that you are anxious to get the surgery out of the way, and the waiting is horrible. I had my surgery done recently, with BAV and aortic root measurement of 4.8 cm. I was told that I would need surgery at the end of June, and got a date at the end of November, and those 5 months were not a good time. The reason why I needed surgery was because my root had dilated from 4.4 to 4.8 cm in one year, after having been stable for 8 years.

I have known that I would need surgery for many years before that, but unlike you wanted to delay it for as long as possible. I was always told that 5 cm was when surgery would be carried out, which would probably be when I would be in my 40's. As it happened, I was 39, and just below 5 cm.

I actually do not think that a reputable surgeon would operate on you if you are not at the threshold for surgery, and I'm not sure that 25k would cover it either. I have no idea how much valve replacement with graft costs on the NHS. I have seen $100,000 plus quoted for American insurance claims, but think medicine is more expensive there.

Having been misdiagnosed with asthma must really have dented your faith in the medical profession. I hope you get some sensible answers at your upcoming appointments. I wouldn't worry about turning into a wheezing 50 year old either. With 40 just around the corner, 50 seems quite young to me. Certainly, in my ward in hospital, most of the other patients were in their 60's or above, and coped with surgery brilliantly (better than me if the truth be told).

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Permalink Reply by John French on January 31, 2012 at 19:33

I agree with Madeleine - even with private healthcare a surgeon won't do the procedure unless they think it is absolutely necessary. The point I was making about private healthcare was that you have more choice over consultations and getting appointments with specific surgeons to talk through risk factors,etc. When surgery is needed for serious conditions the NHS generally is the best place to be treated in my humble opinion, whether it is elective or emergency surgery.

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Permalink Reply by Mark on February 1, 2012 at 10:59

I hear you John. And yes I agree the NHS is the best place. I am going to seek out some "therapy" if only by way of talking things through to make sure I am not going bonkers. I deal with my day to day symptoms brilliantly and do not let them bother me. The atrial fibrillation does make me feel very skittish, anxious and pretty bloody awful in all. The last time it happened, I was in the barbers getting a haircut and a wet shave, almost fell asleep and then "wallop" it went off. The time before that, I was singing my head off whilst I was doing the washing up. Hardly anxiety related at all. Day to day I'm totally cool, listen to my body etc etc. My "anxiety" is all future related, I'm adopted and have no idea what health issues I may or may not have in store. I may indeed become more symptomatic before surgery, and in all honesty, and I humbly admit, that I may need reassurance or "therapy" to talk this through. It just gets a bit "hard basket" sometimes and quite a pain in the arse.

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Permalink Reply by Neil Buckland on February 14, 2012 at 13:47

Hello Mark,

I was diagnosed in june last year...which came as a massive shock as I am pretty active. I have had heart 'symtoms' like palpitations for years and was embarrasssed to go back to the doctors all the time as they couldn't find anything. Then it got worse and the echocardiogram showed up severe stenosis, plus enlarged heart, regurg and dilated aorta (4.8)...wow what apunch in the face that was. I can sympathise with the anxiety, I suffer too. I am determined not to let it stop being active..in fact I meet my surgeon in swansea last year as I was circumnavigating wales by sea kayak..I had just completed 250 miles at that point. I still keep active but its always on my mind everyday..some days I can deal with it some days I feel awful and can't deal with the truth. So don't worry, you are not alone. Keep in touch and feel free to air any concerns, everyone here is really really helpful. Best wishes,

Neil

Mark said:

Thanks for the advice guys. I'm happy to go "mechanical" at least it will last longer than me. And my darlin' old Mum has been on Warfarin for years and years and the only problems she has are bruises when she totters off and bangs into things. She's manages perfectly otherwise. I do have a lot of deep rooted "anxieties" I will admit to this. For ages I complained about something not feeling right with my heart. No one listened. Then I was admitted into hospital in a right old state and they kept me in for over a week with what they thought was Pneumonia and Asthma, 9 days of asthma treatment, steroids, and antibiotics. The asthma medication did not help at all, and a few months after being discharged and back to work, I got sick again, and found out I have a heart condition. And stopped the asthma treatment completely. I am finding it hard to trust my doctors, and their judgement. I'm sure if I was able to flash £25k in front of their faces, they'd pee themselves in delight, I would be fixed in a week, then I could forget it all and carry on with my life as normal, ticking, clicking and thumping all the way. The surgery doesn't scare me at all, it's the waiting, and hoping to god that something isn't missed should I become unwell again and it all be put down to "anxiety" I fecking hate that word. I have a load of appointments coming up anyways. Until then I am gonna get my bloody bike out of the store, pull myself together and go for a ride, dodgy ticker or not !!!!!

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