Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!
Artificial Heart Valve Surgery & Living with Warfarin: UK Info Support Group
To have surgery or not? that is the question...
Hello everyone. My name is Andrew, I am 33 and from Huddersfield in West Yorkshire. The question I would like some help answering is when is the best time to have valve replacement surgery?
I was diagnosed with leaking Aortic Valve at the end of January 2009. My family and I had been to stay with my wifes sister and her Husband over the Christmas Holidays and during our stay with them I felt some pains in my chest. I didn't think much of it, however they continued upon our return home. We were going through a stressfull time money wise and I put the pains down to the stress. One paticular evening I could feel the pain and it felt to be moving and through my left shoulder so my wife insisted I spoke to NHS Direct. They advised me to go straight to A&E where an over night stay, an ECG and a chest x-ray revealed that my heart was enlarged. I was sent for an echo which revealed the leak.Since then I have been under the care of a cardiologist and have bianual echo's and consultation's. From the first consultation I was told that at some point I would have to have the valve replaced.
I have become quite a keen cyclist over the last year and have lost a lot of weight and feel as fit as ever. I only very rarely get the pain which is very mild when I do feel it, so I was quite shocked when I attended my appointment last Friday and the registrar asked me how I felt about surgery. Shocked was the honest answer as I said I feel great. I told the registrar that while I wasn't having any symptoms then i would prefer not to have surgery yet, but he advised that risks were minimised while I am not suffering any symptoms. We agreed that I would make another appointment in 6 months as usual but I have not thought about much else since.
I have found the posts on this web site very informative about what happens post op but just wondered if there were any other members out there who were asked about surgery while they felt no symptoms?
Look forward to hearing from you:-)
Views: 225
Replies to This Discussion
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Permalink Reply by Tracey Amey on -
Hi Andrew ,i have had a new mitral valve but i had 2 heart attacks prior to this ,but my father was in the same situation as yourself ,he had no pain but new that he had leakage of the mitral valve ,this was not causing him any problems but he was asked to consider surgery as the risk was minimised ,hes 80 this year and had it done in july 2011 his surgery was alot easier than mine id say and recovery was great ,i would seriously consider having the surgery done while you are fit and healthy ,you will cope with the surgery alot better ,hope this helps and inbox me if you want to no anything regards Tracey
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Permalink Reply by Graeme on -
Andrew
thats a tough question to ask the members! My immediate answer would be to get it done as soon as you are ready - and the younger you are at the operation - the better. The next question you must answer is what type of valve - Mechanical or Bio. There is a current thread on this alreay on the site (mechanical v bio) I also would be concerned about having this over my head constantly and the mental effect it would have. Lets know how you get on..
cheers
Graeme
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Permalink Reply by John French on -
Allan - I presume that you don't have any corresponding aneurysm of the aorta root as well as the leaking valve ? In many cases (including mine where I had no symptoms at all) where the valve and aorta needed replacing - it can be the aneurysm that is the driving force behind the timeline for surgery.
My cardiologist did say to me that if the heart showed signs of becoming enlarged because of the leaking valve they would consider surgery at that point even if the aneurysm had not reached the trigger point for the operation. So by implication an enlargement/thickening of the heart muscles is not a good thing - even if you can cope with the symptoms.
Not an easy decision but I would take the lead from your specialists.
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Permalink Reply by Andrew Ellis on
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Hi eveyone, thanks for your replies:-)
Like I said in the original post my next echo and appointment are set for June and July this year so I will see what the consultant has to say.
There is a part of me that agrees with you Tracey and that I should have it done as soon as possible whilst I am not suffering any symptoms and then get back to normal as quickly as possible. But other part of me can't get my head around the changes to life style that will have to be made. The Warfarin and associated blood tests, I have a young family and how my surgery affect them?
With regard to what type of valve Graeme, I think because of my age the mechanical valve is the obvious choice. The thought of multiple sugeries is not appealing. Although when I told my wife that she would be able to hear it clicking she seemed quite surprised... how loud are mechanical valves?
Aneurysm has not been mentioned previously by the consultant John so I assume that it is just one of the valves that is leaking. Always has been described as a severe leak. Have felt during the consultations that surgery was way off in the distance and that it would just be a case of making my appointments until I started to feel ill. A little dissapointed with the doctor that I saw at my last appointment as it was him that broached the subject of surgery, but when I asked what was involved he told me to google it:-/
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Permalink Reply by John French on
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Andrew - it is a daunting thing to be faced with and there are lots of data points you need to take on board to help you make informed decisions.
I was screened for 2 years between diagnosis and the operation - when the specialists determined I had reached their thresholds for requiring the surgery. Originally I was of the mindset of getting the op out the way rather than waiting so had a consultation with a surgeon. I was lucky to be covered by my work private healthcare programme so could get a private consultation with the consultant of my choice. He took me through the details of what was involved with the surgery and all the risk factors associated with the surgery as well as the post op risk factors associated with taking warfarin,etc. This was all tailor to my specific condition so based on the fact that I had no symptoms, my heart had not become enlarged and the aneurysm was not at immediate risk of dissection - his advice was to wait I.e the risk of not doing the op did not outweigh the risk of doing the op.
It would be good to have a consultation with a surgeon to go through your individual case and to lay out the various risk factors for you - at that point you can make an informed decision. You don't want to delay the op if there is a risk of further damaging your heart, or further complications, but equally you don't to have the op unless it is absolutely necessary.
By the way - I have an ATS brand valve and my wife can't really hear it unless she puts her ear close to my chest - so I was pleasantly surprised over the noise, or lack of it, for me. I can still hear/feel it (difficult to separate the senses to be honest) but that is maneagable.
Hope that helps
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Permalink Reply by Danielle Schweikert on -
Hi. My name is Danielle and I had my surgery 18mo ago when I was 27. I spent 6 days in the hospital( shorter stay compared to most). My recovery was about 6-8 weeks. Getting used to the ticking is weird but I'm alive! Don't wait till it's too late. I waited and one day changed everything, my valve started closing. I was 6 months pregnant and spent weeks in and out of the hospital. I had my surgery 2mo after having my little girl.
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Permalink Reply by phil pendleton on
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Hi Andrew - I had my aortic valve replaced following a heart attack 18 months ago 9aged 57) and since then things have been great. The operation was a total success and I suffered no pain from the wound, the same as 3 other men on my ward. A subsequent scan showed that the new valve had no leaks and that my heart was working normally.
My quality of life and life expectancy have both greatly improved and I must say that I feel totally unrestricted in what I do even though I am taking warfarin. (although I would like to have a bit more of a drink now and then) I think that the side effects of taking warfarin are understandably well pubicised by nurses.docs etc, but for most people these are minimal. For example I have had a variety of cuts, bruises and falls, inc suspected broken ribs, when taking the hounds out and I have been fine.
I have my blood checked about every 2 months(it takes about 1 minute - just 1 drop from your finger required) and I treat it like any other necessary visit such as shopping etc. There is no doubt that the valve is noisy but this is only really noticeable if there is no background noise and most of the time it is others who notice it as you tend to tune out the sound.
With regard to the timing of surgery I would agree with others about getting it done sooner rather than later. My surgeon strongly advised having mechanical rather than porcine(is this the correct term) valve because of its longevity - they are tested as safe up to 200 years apparantly.
Best of luck
Phil
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Permalink Reply by Andrew Ellis on
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Again thanks for the advice everyone. I think I have got my head round the thought that in the coming year I may have the op and that this is not going to stop me from doing the things that I do.
When the time comes for the op I hope I get the choice of mecanical valve, the ATS valve you have John sounds good as it sounds quiet. Are you in the UK?
Hi Danielle, can't imagine going through this while you were pregnant and having the op 2 months after giving birth. As a father of a 4yo and 2yo all kudos to you. How did you cope with a new born after the op?
Hi Phil, from what I have read on here it generally appears that people have to make subtle changes to diet etc but still enjoy most things they did prior to the op.There are people on here that have completed triathlons!!! Glad to hear that you can still have a drink everynow and then. One thing I haven't seen much info on is the regular blood tests. You say you have yours checked every couple of months. Where do you go for it checking? Do you have to make an appointment to see your GP?
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Permalink Reply by Elaine Howlin on
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Hi Andrew
I had a mechanical aortic valve replacement and aortic graft due to an aortic dissection in May 2011. I am taking warfarin and have my own finger prick monitor which enables me to adjust my warfarin a little when I fancy that extra glass of wine or a bigger portion of Broccolli which I love. Admittedly I am a nurse but it doesn't take long to work out the warfarin dose as all your blood results are written in a 'Yellow Book' which you take to the hospital when you attend for blood tests. Don't be afraid of the warfarin it doesn't affect your lifestyle too much. The tick tock of the valve is more audible to your ears than others and you do get used to it very quickly. I would have the surgery sooner rather than later and whilst your health is good.
Best wishes
Elaine
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Permalink Reply by John French on
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Andrew,
I am in the UK - I didn't choose the ATS brand valve over the St Jude it was just the one my surgeon prefers to use. I haven't got experience of the other brands so difficult for me to compare noise levels. I can still hear it myself but others seem not to be able to hear it unless they have their head right by my chest. You do get used to it. Brand aside - You absolutely do get to choose between mechanical and tissue valves - the specialists will make the recommendation but it will be your choice in the end.
By the way I am self testing for my Blood as well. You need to buy the machine yourself but you can get the test strips on prescription from your GP - which is just as well as the strips are very expensive. I haven't been on Warfarin long (just over 3 months) so I am testing myself and calling my results through to the clinic for them to set my dose.
Regards
John
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Permalink Reply by phil pendleton on
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Andrew - with regard to blood testing - these might be frequent once released from hospital as your doctor may try to wean you off medication you received in hospital and on to that to be taken for the future. My doc did this over a number of weeks, coupled with antibiotics taken for a slight infection , it took some time before my INR became stable. So at first the testing may be every week or two and then increasing once everything becomes stable. Sometimes you might have a bit of a setback eg if you forget to take your tablets (you may want to consider putting in some failsafes to remind you re this) which will mean maybe a weekly test to check you have got back to normal levels.All of my testing has been done by nurses at my local health centre - its really no big deal. The test takes aroung 30 seconds and involves a prick in the finger, a drop of blood placed on a bit of paper (the strip referred ro by John above) and a reading on a machine. This will prompt achange of dosage or not and timing of next test. All very straightforward and non threatening.
I must research the self testing mentioned earlier although visiting the health centre does get me out of the house (sad git that I am)
Phil
Andrew Ellis said:
Again thanks for the advice everyone. I think I have got my head round the thought that in the coming year I may have the op and that this is not going to stop me from doing the things that I do.
When the time comes for the op I hope I get the choice of mecanical valve, the ATS valve you have John sounds good as it sounds quiet. Are you in the UK?
Hi Danielle, can't imagine going through this while you were pregnant and having the op 2 months after giving birth. As a father of a 4yo and 2yo all kudos to you. How did you cope with a new born after the op?
Hi Phil, from what I have read on here it generally appears that people have to make subtle changes to diet etc but still enjoy most things they did prior to the op.There are people on here that have completed triathlons!!! Glad to hear that you can still have a drink everynow and then. One thing I haven't seen much info on is the regular blood tests. You say you have yours checked every couple of months. Where do you go for it checking? Do you have to make an appointment to see your GP?
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Permalink Reply by Danielle Schweikert on
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It was hard! My sister watched my 3 kids for a month so I could recover and when they came home I had friends help watch the kids and take care of me while my husband was at work. I had a great support system! THAT REALLY HELPS! I get my blood tested every 3-4 weeks unless my levels are low then it varies. The INR machine wasn't covered under my insurance( its roughly $2000 here) so I get it checked intravenously at a local diognostic clinic in town.......it sucks since I have non-exsisting veins!
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