Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

I m 38 (39 nearly) never really been sick and had no symptoms.

Back in the winter or spring I had a real bad cold. My GP listened to my heart and told me that I have a heart murmur. So I was sent to see the cardiologist at Frimley hospital. He confirmed I have a bicuspid valve which will require replacing with a mechanical valve eventually in the next few years.

But in May I was asked to go an meet the surgeon from St George Dr Kanagasabay who told me that I need to be operated very soon as my aorta has dilated too much. 

I was shocked, scared, upset but with advice and good words from people from this website I managed to get on with it. So surgery date was fixed for the 23rd of July. Went into hospital on the 22nd but the surgery got cancelled.

Than the hospital ignored my calls for over a month and no reschedule until I complaint to my local MP and than I was booked straight away on the 17th of September. I had no choice but complain because I knew the longer I wait the worst will get.

The medical staff at St George Hospital Tooting Ben Heir Ward are wonderful and they looked after me very well. Surgery started at 6 AM on Monday the 17th of September. A anti septic shower first followed by some sedatives to calm me down. Than off to the operating theater. The anesthetist took over and a few days later I met him at the coffee shop. I dont remember much myself but he told me I was so scared and terrified. All I remember that I was hang head down and had tubes inserted in my neck. After that first thing I remember was waking up laughing in ICU. Yes laughing and asking for food. The medic in ICU said I was the second patient in 34 years (of his career) who asked for food. So I ate than my mum, boss (friend too) and Kev came to see me. I asked them for white chocolate and grapes and water and food. I was hungry. 


Than first night came. And I had this nurse a lady who did not leave my side. The pain in my chest where the cut was unbearable at times but she was giving me pain killers and was talking to me. In the morning she washed me and helped me seat in a chair. After that she removed the tube from my stomach that was ouch ouch but I was so happy to have it remove as it meant less pain.
After the doctors round I was moved into the regular ward Ben Heir. In a single room. I became paranoid when left alone being scared. I was still in pain and was hard to move in bed as I had electric wires in my neck and my belly. And was very hard to stand up when lying down in bed but I managed and the doctors said I was doing amazing. So second day I was walking, going to toilet and the recovery begun.

The pain decreased in hospital each day. The thing that hurt me most to be honest it was not the operation it was my lungs and my back because I can only sleep on the back. From 3rd day I was able to shower by myself go downstairs for coffee (quite far) and I was eating lots and sleeping lots. 

By Friday the 21st the nurse was suppose to take out the 4 electric wires from my stomach (this keeps the pace of the heart) but I had some problems with my INR (coagulation levels of blood) so they couldnt. But they did Sunday all fine so Monday I was discharged and came back home.

Tuesday I had to go to the local hospital for a blood check and went with my mum for a nice coffee in Camberley and today Robert my neighbor took us shopping at TESCO and I did not get tired and than we had a coffee. So I m doing very well already.

I cant drive for another 6 weeks or work but that is OK. It is very boring but I m happy I m over the worst part and I now is the fun part of rebuilding myself.

So this is the story of my Ascending aortic valve replacement with a mechanical Valve and aortic graft. 

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Comment by nic nic on May 20, 2013 at 15:58
Hi so today another day another thing gone wrong . I noticed a small bump under the sternum at the end of incision. I red that it will go away.
Not mine no as i m very very lucky! The registrar told me is a post surgery hernia so i need another operation. Really? This will be the third surgery i m loosing it!

So from a heart valve replacement to having septicaemia almost and having to have the infection removed surgically than depression and now hernia.

I must have been very bad in a previous life.

Thanks God i m doing some self help cbt and yes stop winging Nicolae you re alive i must say.

On a positive note the valve is great no problems.

St George has not discharged me yet until next year.

I ve been told that full recovery could only be expected after a year and if my heart rate and blood pressure is a good as now they will take me off bisoprolol.

I got realy fat i out on 25 kg because i quited smoking and because i can not longer run without my heart pounding very hard.

All the best to all and hope to speak soon
Comment by nic nic on May 19, 2013 at 19:08
Hello tomorrow i have the discharge meeting with the registrar at st George.
I ve been very down for months now. Anger bursts too and arguing with everyone. Something is not right and planning to find out what.
Comment by Lee-Anne Bray on October 3, 2012 at 11:43

Hi thanks so much for all your replys. That does explain it alot better thanks.

I have severe aortic stenosis, I just looked at last echo report and aortic valve area was 0.8cm2. So very much the stage you was at Martina. I couldnt see on here ascending aorta size but i think the accurate measurments were taken when i had ct scan. Anyway my mind at rest knowing chances are i wont need OHS again for ascending aorta.

Thanks again to you all,

Lee-Anne

Comment by John French on October 2, 2012 at 21:30
Hi Lee-Ann

If you have a bicuspid aortic valve (birth defect) then there is a condition that goes with that which can cause the tissue of the ascending aorta to be compromised and hence prone to aneurysm. Not sure if this is what your diagnosis is or not.

If it is then there are two conditions:
1) a heart valve that will get progressively less efficient over your lifetime to the point where you will start to get symptoms and consult your doctor. The valve will start to leak and it shows up as a heart murmour. Eventually it will need to be replaced.

2) an aneurysm of the aorta - where the aorta stretches. When it gets to a certain size then the risk of it dissecting increases and the cardiologist will recommend surgery to replace it with a graft. At the same time they would do the heart valve.

So effectively it depends which of these conditions hits the threshold means surgery is required that dictates the timing. Your cardiologist should explain all of that for you.

My personal experience is that I had no symptoms at all - a routine health check at work picked up a slight murmour and then subsequent scans identified the aneurysm - at the time around 4.7cm. The threshold for surery that my cardiologist had was 5.5cm so I was screened for 2 years (CT and MRI) to measure the growth of the aneurysm over time. In the end I had the surgery when it got to 5.4 cm. They did the valve and graft all in one.

If you have an aneurysm of the ascending aorta as well as a bicuspid heart valve then I would have thought they would do both at the same time.
Comment by Martina on October 2, 2012 at 21:00

Hi Lee-Anne

Nicolae is right when he says the whole point of replacing the Aortic Valve is to reduce the pressure of the blood exiting from the Aortic valve into the Aorta, if the medical staff (surgeon I guess) feels your Ascending Aorta is not too expanded then by changing the valve it will stop the Ascending Aorta expanding further. Also, it is replaced to make the heart not have to work so hard. I had what is called severe Aortic stenosis, just before the Op (approx 1 month before it) my valve area measured 0.8cm^2 and my Ascending Aorta was approx 4.1cm at its Max dia.

Hope this is of assistance

Best regards

Martina

Comment by nic nic on October 2, 2012 at 20:13
Hi Lee Anne first good luck with your first meeting with surgeon and pre op.
The staff at your local dont need to know about valve they ll check to see your health condition to make sure you can have the surgery.

If the valve is replaved your aorta wont expand anymore. It shouldnt. The reason it expands is because some of the blood goes the wrong way back into the heart chamber rather than out as it supose to. By replacing the valve this will stop. The surgeon will explain it all and this is the sort of questions you ll ask i think.
I hope Martina will corect me if i m wromg but i think the whole point of replacing the valve is to :
1. Help the heart not work so hard to push the blood out
2. Stop the aorta expanding because of regurgitation (my case for sure)

Best wishes
Nicolae
Comment by Lee-Anne Bray on October 2, 2012 at 20:02

Hi Martina and Nicolae,

Thanks for your replys, at least i know now what to expect on the day. Im seeing the surgeon at Treliske Hospital in Cornwall  as he visits here twice a month.His secretary told me they'll also do pre op the same time, but dont know if staff will be able to tell me much as Treliske staff dont deal with valve replacements. Apparently then the next letter i'll receive will be my op date for Derriord Hospital in Plymouth.

Hope you dont mind me asking Martina, as i know Nicolae had his Aorta replaced as very enlarged. But do you know what size your aorta was before it was replaced? As i know i have an enlarged Ascending Aorta but apparently not enough to be replaced yet. Really dont want valve replaced and few years down the line aorta needs replacing. 

Thanks again, Lee-Anne

Comment by Martina on October 1, 2012 at 20:37

Hi Lee-Anne

Good to hear you have your Pre Op on 22nd Oct - won't be long now until you are recovering and writing to us giving your progress reports.

My Pre-Op (at Papworth) was where you meet various medical staff to discuss what will happen on the day and for the first few weeks post Op. For example, they discuss any medication you are currently taking and what to do with respect to your medication leading up to the Op. They do blood tests, blood pressure etc. I had a Chest X-ray. It is nothing to worry about and the staff will take you though everything. I'm sure on the day the questions will come naturally when you meet the medical staff.

Hope this helps a bit.

Best regards

Martina

Comment by nic nic on October 1, 2012 at 20:35
Hi again
Cornwall lovely i go once a year to new mill near penzance.
I met my surgeon before the pre op at my local hospital and he explained the procedure. I have not asked him any questions as seeing him happened so fast i was shocked with the news of heart operation.
Few weeks later i had my pre op at St George Tooting. That was with a very nice, warm and unerstanding nurse. She spent a lot of time with me and told me all that i need to know and what to expect. She also told me about the discharge and how to look after my operation.
On pre op you ll also have chest x-rays, echo, ekg, blood test (no fastening but you ll have a fastening blood test before hand). They ll weight and measure you and if you smoke as i used too they ask you to blow into a machine to check your lungs.
The surgeon might also ask you for an angiogram. Thats eassy peassy. You go in the morning and out by lunchtime and it doesnt hurt at all. Angiogram is to check if you need anything else done during operation (unlikely) . I didnt need anything else .
Hope this info helps best wishes
Nicolae
Comment by Lee-Anne Bray on October 1, 2012 at 20:02

Hi Nicolae

So glad your doing so well. Been great reading your blogs and doing so well so soon.

I've just read your other blog about 'sneezing', i so hope Martinas advice on her 'huggy' helps! I've read about  Martina using a rolled up towel before and have already eyed up my towel ready for the job!

I live in Cornwall so my op is going to be in Derriford Hospitel in Plymouth as they dont do it in Cornwall.

As you know i have my pre op on 22nd October and wondered what happens at a pre op and perhaps if anyone knows of any questions i should ask my surgeon?

 Lee-Anne

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