6 weeks post AVR operation.

by Barbara Y
(Cheshire, UK)

It's 6 weeks to the day since my op to replace my aortic valve. Just 6 weeks and a day ago I was feeling fit, well and very, very scared about the prospect of open heart surgery and the scar that would result. At no time did I have any symptoms that anything was amiss and went to the gym 3 or 4 times a week, did 3 Zumba classes a week and went line-dancing every week. I was fit.

I first knew there was a problem with my heart after I crashed my car almost 4 years ago. I wasn't hurt but my husband made me go to the GP to be checked out. On listening to my heart the doctor asked if I knew I had a heart murmur. I didn't. That set the ball rolling for a barrage of checks and tests to find the cause. It was established that I had a bi-cuspid aortic valve with stenosis. Because I was experiencing no symptoms I was told not to worry about it but it would need to be replaced at some point in the future, probably in 10 to 20 years time. In the meantime it would be checked annually. I went away quite happy and relaxed about it.

The following year I didn't see the consultant cardiologist at my local hospital only a registrar. He just told me to come back again next year, so again I didn't worry. The following year the consultant said it had deteriorated somewhat and she would have to find the optimum time to operate. Alarm bells start to ring!! This was not what I expected - still no symptoms. Last November, following my annual echocardiogram, I had an urgent appointment to see the consultant again. She said the stenosis was now so bad she wouldn't even risk me on a supervised treadmill test and that she would get me an urgent referral to the North-west Heart Centre at Wythenshawe Hospital. Still I have no symptoms and I'm still doing all my usual exercise! I can't understand it.

My initial reaction (which lasted almost up to going into hospital) was that there was no way I would have open heart surgery when I felt there was nothing wrong. I couldn't face the prospect of that ugly scar for the rest of my life either. I didn't want my life to change. I became such a wreck I couldn't think about it or talk about it without dissolving into tears of self pity. I honestly preferred the idea of dropping down dead rather than face the op. It was only family and friends who persuaded me to agree to the op.

Having been persuaded (outwardly, not in my head) I now had to come to terms with what would happen next and decisions had to be made with regard to what sort of valve I would have, mechanical or tissue. I spoke to as many people as I could via friends of friends and The Ticker Club, and in spite of my GP and local consultant both advising I go for a mechanical valve, I decided on a tissue valve, mainly because Warfarin would mean I couldn't take the anti-inflammatories I rely on for the Ankylosing Spondilitis in my spine.

In the meantime, cardioangiogram completed and established no by-pass op would be necessary and pre-op checks all done to establish my fitness for surgery, and finally 13th March arrived - my admission to hospital day. I went like a lamb to the slaughter and checked in and then straight out again and chain smoked about 10 cigarettes and cried buckets before finally going in and settling myself down. I found it strangely calming meeting the surgeon and the anesthetist and signing the consent form. I was just being carried along by it all by then.

I do remember begging the surgeon (yet again) to make the incision as short and neat as he possibly
could and also told him that if anything went very wrong and I wouldn't make a full and complete recovery then I didn't want to be kept alive! I had intended writing that into a living will beforehand but didn't get round to it.

Operation day is here, Wednesday 14th March, and I am first on the list. Get ready to go and wheeled down to theatre about 8am. Don't remember anything else until the following day when I wake up on CTCCU . I can't believe it's over. The breathing tube is out and I feel quite comfortable and pain free. Attached to lots of drips and monitors and feel that my blood pressure and temperature are being constantly taken. The staff are lovely, can't do enough to make me comfortable, kind, friendly words. The surgeon and his registrar, who I gather is the one who actually operated, came down to see me and told me that everything had gone well and to plan and that after another day on CTCCU I would be back on the ward.

Next day sees the physiotherapist getting me out of bed and into a chair and even walking a few steps, albeit hindered somewhat by the catheter bag and temporary pacing unit. My legs don't feel like they belong to me and I feel quite short of breath. The physio assures me everything is normal. Begin to wonder why I'm not going back to the ward and eventually ask my dedicated nurse. She tells me that there isn't provision for the pacer on the ward. Sometime later, a doctor I hadn't seen before came and fiddled with the pacer box, telling me that I might start to feel a little strange as he altered the settings. I didn't. 6 days later I was still on CTCCU, still connected to all the machinery and catheter but not feeling too bad.

My consultant and his registrar paid me another visit and told me that they were very sorry but I would need a permanent pacemaker fitted as a result of the valve being replaced. Complete shock! Nobody had mentioned this as a possibility. It seems that when they came to replace the valve there was a lot of calcification and in trying to get rid of it all they had irreparably damaged most of the electrical impulses in the bottom chambers of my heart. Without a pacemaker I would not survive as that part of my heart would only beat intermittently! The op to fit the pacemaker would be in 2 days time and then I could go back to the ward.

Pacemaker day. Again I'm nervous but not too bad. When I'd had my angiogram I had seen a lady having a repeat pacemaker fitted as a day patient and even though it was a second cut for her it was a very neat thin line.

Taken to the Cath lab for the op to be done with local anaesthetic. Lie on my side and feel very little except for lots of pushing and manipulating to get the pacemaker in place. Underlying skin is stitched and top layer is held in place with glue. Must admit it doesn't look nearly as neat as the one I'd seen before.

At last back on the main ward with the promise that I would be rid of the catheter next morning and soon be home. Not to be. Blood tests reveal that my red cells are down and my white cells are up. Seems to be ringing alarm bells as I am drip fed 4 different strong antibiotics several times a day and given an ever changing daily cocktail of pills. I feel permanently nauseous and everything tastes salty so I can't eat or drink much. At one point I was being given 30 pills a day plus the drips!!! Shock, horror, water retention sets in next and my whole body blows up like a balloon. My legs and feet look like an elephant and I have the awful thought that i will have leaking oedema like my mother and end up with leg ulcers like her. I put on 12kilos in 2 days! I'm put on a very strong diuretic to help get rid but nothing happens.

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Comments for 6 weeks post AVR operation.

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I can relate!
by: Sandra

I can so relate to your experience. I had my bicuspid aortic valve replaced on November 21, 2011. Mine had been "watched" for seven years and I was experiencing symptoms in the last six months, but nevertheless I also felt very much like a lamb being led to the slaugher! I also chose to go with a tissue valve.

Keep in touch and let us know how the rest of your recovery goes. It was a good 7 - 10 weeks before I felt "like me" again - and that was without any complications. But I can tell you that now I feel fantastic and I am enjoying a variety of activities. And, I don't mind my scar a bit. In fact, I'm even a bit proud to show it off!

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