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Comment by Neil Buckland on December 31, 2011 at 13:17

Hello John,

Thanks for the message. Your account does make me feel better. In order to be a little more positive I need to stop reading up on the op on various websites..some can paint a pretty grim picture with bad experiences.

Good to know that most people on this forum have a good positive outlook to the future.

Best wishes,

Neil

Comment by John French on December 30, 2011 at 20:32

Neil - to answer some of your questions. I have an ATS valve (not the St Jude valve) and I am aware of it most of the time. In my experience it is more the sensation of the heart beating rather than the external sound I notice - other people can't really hear it unless they are very close to my chest. Over time you do tend to zone it out so it fades into the background most of the time. I found it did disrupt my sleep pattern initially but a recommendation from this forum was a soundtrack that masks the sound of the valve "Heartbeat River". I have found this invaluable as if I have trouble getting to sleep because I am focusing on the valve, I plug in the iPod and listen to it - within minutes I am fast asleep. It costs a few $'s and can be downloaded from CD baby. Other people on this forum have other ways of dealing with the valve and sleep - so everyone finds what works for them.

So living with a MHV is not the end of the world - just a slight adjustment in your lifestyle that you soon get used to.

Hope that helps

John

Comment by Neil Buckland on December 30, 2011 at 16:34

Thanks for the message John. Good to hear that you were out and about really quickly. These are all the things that play on my mind..will I beable to do all things I have enjoyed doing? Will there be complications etc...I'm trying to be positive but I have my bad bad days.

I will question the consultant about the waiting time and about regular checks to make sure things are not getting worse. It's on my mind everyday and to think that I have to go another 12mths minimum stresses me..but like you say, they have daignosed my condition and there is a way to fix it...so I'm hoping all will go well.

How have to coped with the ticking noise. Can anyone else hear it? Does it stop you sleeping?

Glad to hear you are having long walks and recovering quickly. Thanks again for all the advice and hope you have a great new year. Best wishes,

Neil

Comment by John French on December 30, 2011 at 10:58

Neil -They did screen me regularly for any change in the heart I.e. thickening of the muscle, but in my case there was no change so it was just the aneurysm that dictated the timing in the end. Everyone's case is different so it your cardiologist and surgeons who can give the best advice. I presume you are under regular screening so have the specialists mentioned at what point they would bring forward the operation ?

My recovery is going well - I start back at work on the 9th Jan which will be good - never thought I would be glad to be back to work ! I am still relatively new to warfarin and with the recovery have not got back to the sports I did before the diagnosis. In reality it won't stop me doing the hill walking, cycling, running or gym but I don't think I will get back to wakeboarding or scuba diving (I had an unrelated collapsed lung which put paid to the diving). The cardiac rehab classes have been great and a good way to get back to proper fitness training exercise post op. I do a lot of walking at the moment - around 5 to 6 miles most days - so that has also helped to blow the cobwebs away....

I know it is not easy living with the condition but you need to concentrate on the positive - at least the condition has been diagnosed, you are being screened regularly and when the time is right there is a procedure that will completely fix it. The procedure really is routine these days - I was out of hospital after 5 days and out walking in a local park within a few days of that.

Have a happy new year

All the best
John

Comment by Neil Buckland on December 29, 2011 at 18:07

Hello John,

Thanks for your message the info has helped alot. I guess I'm just worried what may happen in the mean time. I have an aorta measured at 4.9. It's the combination of the aorta size, the severe stenosis and thickening of the heart muscle that has the consultant advising surgery. Up until recently I have been asymptomatic, I originally went to the doctors about heart palpitations which are very unpleasant. I still don't suffer major symptoms..I don't have dizzy spells or chest pains apart from what feels like heart burn when I exercise but luckily I can still go for walks and kayaking..I'm just more aware of every heart beat.

How are you getting on with your recovery? Will the warfarin effect the activities you used to do?

I hope you are well and thanks again for the advice and info. Best wishes,

Neil

Comment by John French on December 29, 2011 at 10:13

Neil,

It is my understanding that as part of the patients charter you can choose which hospital you are seen in (but your GP would still have to refer you)- not sure if that would help improve the waiting time you have been quoted though. If it were me I would still want to be seen by a specialist surgeon who does this procedure all the time versus getting it done more quickly.

This link is from the Citizens advice bureau on NHS patients rights - it might help.

http://www.adviceguide.org.uk/index/your_family/health_index_ew/nhs...

You can also say you are happy to go in at short notice if they have a cancellation.

I had the same condition as you - aneurysm of the root of the aorta and a bicuspid aortic valve with a leak/regurgitation. I had the op back in October this year but I was diagnosed in November 2009 after a random health check - I had no symptoms.  At the time though the surgeons told me that the size of the aneurysm was below the threshold for surgery - by 2 mm as mine was 5.3 cm. Threshold seems to be somewhere between 5cm and 5.5cm based on the surgeon/cardiologist's view of risk versus reward of doing the operation. In my case it was the aneurysm that dictated the timescales not the regurgitation of the heart valve.

I would have thought that if your aneurysm was of the size requiring surgery you would not have to wait 12 months to have that done.

Has your surgeon/cardiologist gone through the risks of not having surgery and the risks of having the surgery/taking warfarin, etc ? That really helped me to understand what I was dealing with for the two years whilst I waited for my aneurysm to get to the operable threshold, as like you I had to stop many of the active sports I did.

Regards

John

Comment by Neil Buckland on December 28, 2011 at 9:20

Hello everyone,

Thanks for your cooments, its so comforting to know others experiences..you do tend to feel alone with all this going on. Does anyone know if it's possible to get referred to another hospital? It's just thats its taken from June 2011 to get finally get put on the waiting list in Dec despite my condition being classed as severe! So after all this time I still have to wait 12mths minimum (there seems to be some strange delays...5 weeks for the surgeon to look at my angiogram results. The consultant and surgeon have been great and I like them but the admin times seem to add to the anxiety!)..just wondered if its possble to move somewhere else where the waiing list is shorter? Hope you can help. Thanks again, hope everyone had a good break over christmas.

Comment by Julian on December 28, 2011 at 0:50

Hi Neil, I'm the same as you, bicuspic aortic valve also aortic stenosis, I had the operation done in Leeds LGI very good surgeons there, operation was on 25/10/11, I had 8 weeks waiting,  you do go through worrying times and it is life changing believe me my palpitations at one stage went into A&E sat there for 4 and half hours before seing a doctor, must point out I was under obsevation but when the doctor turned up he said I know its distressing but you are in a loop, you panic your heart beats faster and more palpitations, so calm down and don't stress which when your a stress head it's quite hard, you will be fine listen to your body don't over push yourself after your Op as Greaeme has said in the past everything in moderation.

Hope it all goes well

Regards

Julian

Comment by Andrew Sopp on December 27, 2011 at 13:38

Hi Neil, following a TOE scan in early August this year I was told that I had a badly diseased aortic valve and a leaking mitral vale that needed urgent surgery. 4 weeks later I was in for the operation. It was such a shock and whilst I did not have much time to dwell over things I did think every day that this could be the end and emotionally was very draining. I took comfort though from the fact that the procedure has a very high succes rate perticularly for the relatively young and fit and that my surgeon had undertaken a large number of valve replacements. I am now 17 weeks post op and can pretty much do everything I did before. I thought that the recovery period is pretty short given the procedure, the first couple of weeks are the worst but get past these and things start getting back to normal. I started light to moderate exercise after 2 weeks and attended the cardiac rehab sessions after 6 weeks which really helped build confidence. I elected for the mech valve as I was 49 at the time of the operation, yes it is strange hearing the thing ticking away with the gentle thumping sensation that goes with it but most of the time you don't really notice it. I am on Warfarin and my INR has started to level out. It is a bit worrying being on the medication but as many others have said on here, if you manage it, it is fine. I have foumd the post op care from the NHS very good so far. Also the comments on here are helpful and comforting that you can pretty much lead a 'normal' life post op. Hope that you hear something soon and good luck.

Comment by Elaine Howlin on December 26, 2011 at 22:17

 Hello Neil

I had an aortic dissection in May 2011 with an aortic valve replacement.I still have palpitations sometimes and I understand how distressing  it is.I have a mechanical valve and I take Warfarin daily.I do not find it interferes too much with my life and much less so than the Beta Blockers I take for the palpitations which make me incredibly lightheaded. I am determined that this will not stop me doing the things I enjoy so try to remain strong and positive it helps a lot in the long run and particularly after the surgery.

Regards

Elaine