My replacement Pulmonary Valve is one year old today!

One year ago on Friday 8th June 2012 I had my pulmonary valve replaced at the Royal Brompton Hospital in London.

Last year at this time I had been in surgery for about 2 hours, with another 2 and a half still to go, with about 90 minutes of that time being on heart bypass.

It has been a busy year since then -  mainly because my energy levels are so much higher now! And in addition, I want to be more active and to get out and about more often.

I am now spending less time in front of the laptop screen (hurray!) and more time seeing friends and enjoying life with my family. I have a new bike...actually, I have my first EVER bike - at least it is one that is neither borrowed temporarily from a friend nor a branded freebie (from the company that built our house) that never suited me in any case.

I have increased my working hours up to 25 hours per week since April and this is going very well, giving me more time to get things done at work, but without impacting much on life outside work - I certainly have time to run errands before the school run, or go for a walk if the weather is good, for example.

I had told my daughter that once she was six years old and once my heart surgery was over, and I was completely recovered, that she could have a pet. In February she reminded me of this promise and so we now have 2 cats, adopted from Cats Protection.

 

As a family, we finally have a holiday to look forward to - a sunny holiday involving a flight away from the UK for the first time in years. In 2011 heart surgery was likely, so we had a holiday in the UK. In 2012, the heart surgery was definite, so the summer holiday was taken up with my recuperation. In 2013 a holiday was one of the first items on my long "To Do" list.

 

We are off to the Mediterranean to the island of Majorca, which was my first "sunny" holiday as a child. I've also visited there on a cruise and had a city break to Palma with my girlfriends a few years back. So life is pretty good at the moment.

 

In fact this recent picture of me sums it up very well:

 

 

 

We will be celebrating today of course and raising a glass to the wonderful team at the Royal Brompton Hospital who looked after me so well last year, as well as to all my fabulous family, friends and colleagues who were so kind and supportive. My thanks to you all!

 



So what IS a CHD?

CHD stands for ‘Congenital Heart Defect’ and is an abnormality of the heart which occurs soon after conception and often before the mother is aware that she is pregnant. The defects can range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

What does Congenital mean?

Congenital means 'born with' and/or 'from birth'. Sometimes a CHD can go undetected until adulthood but nowadays the majority are detected at birth. With modern medicine these defects are usually corrected with surgery. Some babies receive their first open heart surgery at just a few hours or days old.

How common is it? 

Congenital Heart Defects are the Number One birth defect in the UK affecting 8 out of every 1,000 live births – that’s almost 1%. Unfortunately CHD is also the Number One cause of death from a birth defect, killing twice as many children as cancer every single year. 

Types of CHD

There are 35+ known types of CHD, which can be present in almost any combination, so that every person’s defect is very different.  CHD's can be fixed, often via multiple open heart surgeries, but cannot be totally cured. This means the heart must be monitored by cardiologists throughout life. 

How many people are affected? 

It has been estimated that there are currently 250,000 adults with CHD in the UK, approximately 1,000,000 in the US and similar numbers in proportional terms in Europe and the rest of the world.

Even so, you probably think that you don't know anyone with a CHD…

Wrong! 

You know me (or in any case are reading my blog!) and, unless you look very closely, you won't be able to see my scars - even my new ones from June 2012 are pretty faded now!

 

My CHD is called Tetralogy of Fallot (ToF) and it occurs in approximately 400 cases per one million live births. It consists of 4 defects, which are Pulmonary stenosis, VSD (ventricular septal defect), right ventricular hypertrophy & overriding aorta.

Picture from www.heartbirthdefect.com

Increasing Awareness

The first step to saving lives is to increase awareness of CHD. Following on from awareness will come funding and research, and this is the key for hope and survival for sufferers and their families.

Please help support awareness of Congenital Heart Defects (CHD) by sharing this blog with your friends - this information could save lives.

 

You can also find out more information on all types of CHDs, as well as symptoms, tests and types of surgery on http://www.chd-uk.co.uk/ 

 

CHD Awareness Week - Happy Heart Day to Me!

Thirty-eight years ago, on Friday 7th February 1975, I had the operation to repair my heart defect, Tetralogy of Fallot.

I was seven years old and I would celebrate my eighth birthday a few days after the operation.

Life had been difficult for a few years before this - I couldn't walk or run very far, got tired very easily and had to stay in at break times at school. Even apparently non-physical activities were prohibited - for example, in my primary school class, as we learned about recording measurements, I wasn't allowed to see how long I could hold my breath for. Which doesn't seem like much, but it was another instance of my exclusion from the "normal life" that my friends led.

I remember arriving at the hospital, Harefield Hospital in Middlesex, and being given a bed in the children's ward. Every time someone who looked like a doctor or nurse approached the bed, I started to cry and hugged my Mum, until it turned out that one of these people was there to find out what school work I was doing in my class and to provide me with exactly the same workbooks, so that I didn't fall too far behind with my education! It seemed so odd at the time to have those workbooks, so far away from home - yet it was strangely comforting.

The day before the operation I remember meeting the surgeon, Professor Sir Magdi Yacoub (although that wasn't his title at that time), and noticing how large his hands were, which seemed unusual for someone who was about to perform such intricate surgery.

On the day of the surgery, the preparation started early in the morning and I must have gone down to surgery soon after the breakfast that I wasn't allowed to have. I was asked to "talk into the Magic Telephone" and that was the last that I recall of that day.

My first impressions after waking up following surgery were firstly that I was incredibly thirsty, that my throat was sore and why was I in a plastic tent!? The plastic tent was an oxygen tent, which felt really sweaty and uncomfortable. I was cross that I couldn't have more than a sip of squash every half an hour (I don't recall the exact times, but whatever it was, it seemed incredibly unreasonable to me, when I really wanted a drink).

On the Monday morning, I woke up in a different room - probably in a High Dependency Unit (HDU), whereas the first time I woke it was in the Intensive Care Unit (ICU). I had breakfast and then I was given an injection in my leg. It was very unpleasant, but fortunately at that time I didn't realise that these injections would be a regular thing over the next few days. I know now that those injections were probably of Heparin (or similar) to prevent blood clots forming following my surgery.

My next memory of that day is of walking down the corridor to meet my Mum as she came to visit me, which must've been some sight for her, so soon after my surgery. We then returned to the main ward, where I remained for a further two and a half weeks. I have no recall of being in any pain at all - within a few days I could wander around the ward - and of course I had my school work to distract me.

The heparin injections continued twice a day - one day I was well enough to hide in the locked bathroom for a while, but the injection was unavoidable. On the Wednesday of that first week it was my eighth birthday and we had a party in the children's ward. I had a lot of presents, but one of the things I remember most of all was a Get Well Card signed by the whole of my class at school. I also remember that my cousins had sent an "Osmond's World" magazine for me to read, which was even better than the Barbie doll I got for my birthday!

As CHD Awareness Week starts today, I am happy to share my memories of such a very important day in my life.

In many ways, 7th February 1975 was when I began to live the life of a "normal" child.