Thoracic aortic aneurysm and faulty heart valve

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I have recently been diagnosed with an thoracic aortic aneurysm and a badly damaged left ventricular valve.  The aneurysm is 5.9cm and on the arch at the top of my heart.  It was found by accident when I had a ct scan for difficulty swallowing then further tests followed which found that the 'murmur' I was diagnosed with 7 years ago had deteriorated so badly the left ventricular valve would have to be replaced with a mechanical one.  At the moment I am waiting for a final visit with the surgeon before being given a date for the op.  The thing is I feel perfectly fine, I have no pain, no shortness of breath, have as much energy as always and in fact feel fit as a fiddle.  I am 58 and have kept as upbeat as possible about all this, but my family are distraught with worry about the 10 - 15% chance that I won't make it through the surgery (national statistics) and the possibilty of stroke or paraylsis.  My dad had an aortic aneurysm (unknown to him) and it ruptured, he survived the surgery but died 3 months later having never left the hospital.  This was only 4 years ago and my mum is now sick with worry, literally, about me.  I am  worried that I will never get back to how I am now, that I will become reliant on family and friends.  Its usually me who helps the family with the children and my mum.  I live alone but have family close by and my ex husband (who is my best friend) has been a great support.  My family, bless them, are fussing around and not letting me do anything and I know I would be the same if I were in their shoes but I feel like an invalid although I should be grateful for their concern.  I am feeling so confused, I refuse to cry about this and I am holding myself so tightly together but seeing my families tears is breaking me up.  I am putting my 'healthy self' up for a life threatening, painful operation.  Has anyone else been in a similar position and could give a few words of encouragement?

Many thanks

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  • Posted

    I had my aortic valve replaced in May 2012 when I was 78. The national statistics don't take age and fitness into account so your odds are better. When the surgeon gave me the odds we were overlooking Brighton racecourse. I said that sounds good as I don't get many winners at those odds down there.

    At that time my aortic stenosis had been found by chance in the March nine months before. I was asymptomatic then and it was difficult to see the need for surgery but by the year end I was beginning to get some chest pain.

    If I did not have the operation the symptoms would soon worsen and I would be dead in about another fifteen months so an 8 or 10 to one chance of not surviving surgery looked good to me.

    I don't have a thoracic aortic aneurysm just an aortic one lower down the system that is probably not growing fast enough to need surgery.

    The recovery from surgery is quite tough but you get through it. I read all about the procedure and watched videos of it and read peoples accounts of their recoveries. Google,  Betty Boothroyd aortic aneurysm for her account. One thing that I missed out on was the high chance of having atrial fibrillation after the operation. The side effects of Amiodarone and warfarin prescribed for that before I had a cardioversion  slowed my recovery. As I has a tissue valve I had not expected to need warfarin.

     I often think that telling family to early about things like that is a big mistake as you have to cope for them as well as yourself..

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    • Posted

      Hi Derek,

      I think you are right about telling family, I am constantly beating myself up for telling them and causing such upset.  I should have waited although I've only known myself for about 4 weeks.  I'm having a mechanical valve because of my age but I have heard that warfarin can have nasty side effects.  On the other hand if I have a tissue valve I will have to have it replaced when I am in my 70's when recovery may not be so good.  I am wondering if there is any alternative to warfarin,..

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    • Posted

      As Maggie Thatcher said TINA. There is no alternative.

      Actually there is one that few doctors or cardiologists ever prescribe and not many know about called Acenocoumarol or Sinthrome. It is as  old as warfarin but they say that they know more about warfarin so prescribe it.

      There are three new anticoagulants but they are contra indicated for mechanical or tissue valves. They also have side effects and if you have bleed there is no antidote for them. With warfarin they can give you a vitamin K injection to thicken your blood or you can eat a big plate of spinach.    

      Warfarin is a strange drug. I know one person who has been on it since 1980 with no problems and another since around 1990. Most people obviously get on all right with it so don't post here. With me it gave me joint pains. A lot of people say that they always feel cold.

      I don't know how true it is but the person who has been on it since 1980 was told by her consultant that the good news is that he has never had a warfarin patient get cancer. It is said that people on aspirin do not get certain types of cancer.  

      After being back in sinus rhythm for six months I stopped it and the pains went. Another medical procedure last year put me back in AF and the joint pains started again when I was back on Warfarin until after my next cardioversion.   

      When I was in for my operation they wrongly let some worried relatives stay with  patients till late at night on the eve of their operation and then come back in the morning. Not very good for us who had been operated on and trying to rest.

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  • Posted

    Hi there, I had my heart valve repaired beginning Jan this year. I knew they may have to replace it if necessary but luckily they didn't have to. I had no symptoms at all till 2 years ago when I started a tickly cough, thought it was a lingering cold, doc sent me for X-rays, all ok, they  thought it was asthma so gave me an inhaler. Then my lung g doc asked to listen to my heart - and it was a murmur!!! This even tho I had been diagnosed with AF a year before and put on warfarin - my heart consultant didn't listen to my chest or the murmur would have been found sooner!!!!  Apparently I could have had it from birth! Cut a long story short, had pre ops in June, op due Dec but cancelled twice which is understandable, I wasn't an urgent case.  Recovery been good, of course the rib cage is painful where it was cut but after 6 weeks it had started to knit together and I gradually walked for longer every day and after 6 weeks I had 8 sessions  of cardiac exercise once a week which gave me more confidence to do more!  The cough disappeared (I had been up every night several times coughing the fluid up, horrible!) so that was a plus! I am still on warfarin for the AF but having a monitor for 2 weeks to see if the maze procedure done during the op has worked, would be nice to come off warfarin!! I was quite frightened of course about having the op but it needed sorting! I had it done at Harefield Hospital, they were so wonderful and I'm feeling fine - recovery can take 3 months or longer, we are all different, but it's important to keep up the exercises or daily walk, you will be given a sheet to follow. If you want any more info or have any questions, ask away! By the way I'm 65! 
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    • Posted

      Hi Linda,

      Its great to hear that you have recovered so well, I will keep my fingers crossed that I am the same!  My murmur was diagnosed 7 years ago but I wasn't told I had to have checks so I didn't think much of it.  Apparantly I should have been having it monitored and my valve may not have got so bad it needed replacing.  Never mind, I need to just go forward now, get the op out of the way and start recovering.  I'm worried about the warfarin - what kind of side effects did you get, were they bad?  I will have to be on it for life if I have a mechanical valve...

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    • Posted

      The problem nowadays is that doctors don't listen either to the patient or to their chest:-)

      My murmur had been excitedly commented on by a junior doctor in 2001 when I had chest pains and had an angiogram that was clear.

      The students with her all wanted to listen. 

      I suspect that I may have had it all my life as an incident from my National Service medical in 1952 stuck in my mind.  The doctor was listening to my chest and looked up at me and asked if I had rheumatic fever as a child. I said No and he grunted and listened again but did not comment.

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    • Posted

      Doctors in America are just as lax as here. A friend there had been having regular checks with a cardiologist after an earlier problem. This year he started to get breathless and was referred back to him and told that he had severe aortic stenosis and needed immediate surgery. It was done within three weeks during the operation they found that he had blocked arteries and also did a triple bypass. He is 85 and has made a good recovery but like me is having side effects from drugs prescribed.  
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    • Posted

      Hi Gail - that's shocking they didn't keep a check on your murmur, makes me realise how lucky I am that they found it when they did!! no one likes having an op of any kind and when it's for the heart, it makes it really worrying - I chose not to go to the seminar that was offered before my op - to be honest I felt it would be too much information!! But everyone is different.My neighbour of 82 had the same op as me in May and has recovered well. I remember the surgeon saying to me that it was one of the most common types of heart surgery.   I have had no bad side effects on the warfarin, I get the level checked regularly by the nurse at my surgery (just a tiny prick at the top of finger) and they adjust it accordingly.  It is a good thing to be on really as it stops the blood pooling in the heart by thinning it so that's the way I look on it.  Try and think of it as a positive thing, you are having the problem sorted!  

      l

       

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    • Posted

      That's shocking the cardiologist didn't pick up on your friend's aortic stenosis. Glad he made a good  recovery, the drugs we are given so often cause side effects don't they - I have diverticulosis so after the op I only used the morphine pump for a day or so as it causes constipation, the same for co codamol, so I was on just paracetemol !  
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    • Posted

      American doctors seem no better than ours. Part of the problem is that they all have too many different specialists looking after them and information seems not to be shared.

      A couple of years ago one of his prescribed Testosterone. He felt much better when taking it but started to get headaches. He went to his primary care doctor who did blood tests and found that his blood had thickened to the extent that he was in danger of having clots form and have a stroke.

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  • Posted

    When you said damaged left ventricular valve did you mean your mitral valve?
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    • Posted

      To be honest Derek I really don't know.  I know its very close to the arch where I have the aneurysm as at one time the doctor thought it may be leaking badly because of the width of the aneurysm and would sort itself out after the repair.  But after having another look from the back of my heart via a tube into my throat they said it should have had 3 chambers but only had 2 and they are not sure if it is congenital or whether 2 chambers fused together some time ago. 

       

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    • Posted

      It is amazing what is happening inside our bodies that we are unaware of.

      I had the tube down the throat examination (transoesophageal echocardiogram)  after my valve replacement when I complained of chest pain that they thought was caused by a build up of fluid between the heart and the pericardium. There was but they did not consider it to be enough to drain but they had to drain quite a lot of fluid from my right lung. I had more fluid build up in the lung about six weeks later that was treated by a diuretic.

      My mitral valve does not work all that well but they say that it is not causing a problem. I now know from the sound during an echocardiogram when they are scanning it.

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