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.

It's my 5 month-iversary!

Yes, 5 months have already passed since my open heart surgery!

My "zipper" is healing nicely - strangely, the part that is most visible at the top of my chest still looks more red than the parts that are hidden by clothes. I feel healthy and, looking back on my blog, any little niggles that I had are long gone.

I am back at work, doing my normal hours, and it feels like I was never away for more than a long holiday. I love my job and now, as we start to get busier preparing for our Christmas events, I'm enjoying it even more.

Some things have changed - I'm still keeping my new shopping and washing/ironing routines, i.e. shopping more frequently for fewer items etc. and that is working well for me.

I've finally ditched my V-shaped support pillow, which I had been sleeping on since my surgery (although I do use it when I'm reading in bed - what a great invention!), and for the last month or so I have been sleeping either flat or on either side with no problem.

In addition I am spending significantly less time on-line, especially on social networks. I'm not sure why this is, although perhaps it is because I have more energy and more desire to be out and about with my family and friends and less desire to be a couch-potato....who knows?

It was half-term last week and we went away for a short break to Derbyshire. I went swimming for the first time since my surgery and even managed to do some lengths of the pool (which I haven't done for years)!

Whatever facilities we don't have in this area, one thing we do have is plenty of fitness facilities in the form of leisure centres and public swimming pools. So swimming may become part of my new fitness regime, when I get fed up of the cross-trainer and exercise bike...!

Thinking back to this time last year, it had just become obvious that I wouldn't be having my valve replacement any time soon, as other non-heart-related surgery was more urgent and would take place at the end of November 2011.

I was so relieved that I wasn't facing the heart surgery, but still so apprehensive about the other surgery, and the prospect of both surgeries created a cloud that didn't lift from above me until 8th June 2012.

This year I can look forward to Christmas and spending time with my family and friends...and that makes me really happy.

Welcome to Energy Central!

The one thing I was told over and over before my operation by many people who'd had their pulmonary valve replaced was that I would have so much more energy following the surgery.

During the first couple of months of my recovery I didn't find this to be true - yes, I felt different and better, but in a way that was hard to define. However, in the last couple of weeks, since my return to work, the energy levels have returned!

I stared back to work on 5th September with a phased return, so only this week have I worked my usual hours. I feel that I have coped really well  - I've enjoyed being part of the hectic fundraising team once again. I was a bit worried that I would be so tired that I'd have to spend the rest of the day in bed, but, strangely, it has been quite different.

I seem to have energy levels like never before - or certainly that I have not had for many years!

After work, I often go for a walk instead of sitting relaxing...I don't mean I am over-doing it, just that in addition to physical energy, it seems also to be increased mental energy and the desire to be active, rather than just to sit about.

I've re-arranged the household chores - doing more frequent, but smaller, loads of washing, leading to shorter and more frequent bouts of ironing. In addition, instead of going grocery shopping just once a week, as I used to prior to the operation, I now go at least three times a week. This means that the trolley is not as heavy to push around and that the bags are fewer and lighter to carry.

In addition to walking, I am also using the much-neglected exercise bike that has mainly been used as a clothes horse in recent years and I hope to start swimming again soon.

I had forgotten how much I love to exercise - I've always done aerobics classes, and in recent years, I've enjoyed my yoga class.

I'm not sure, though, that I will go back to either as I feel like trying something new...watch this space!

Getting Back to Normal?

Last week was my little test to see if I really am getting back to normal. I thought that getting into a routine would be a good idea to check that I am up to such a routine every single day. So, with my daughter in a childcare club every day, it was the ideal time to try it.

Getting up in the morning at a specific time was the first test - we had to be at the childcare club by 9am and it was no problem at all, especially as my daughter was so excited about going there, that we were awake hours before we needed to be!

Before we had our little holiday to the North West, I'd tried driving the car and it was fine, but pulling the seatbelt across me and turning the steering wheel were really quite hard to do.

Last Monday, the whole driving experience was much improved - no problems with the seatbelt or the steering wheel, and moving in my seat was also much easier. Every day I tried to do a few chores - shopping for groceries was the main one, as I don't really want to do One Big Shop a week, like I used to do, as I still can't carry any heavy bags.

I even made time for some exercise and did a long walk one day, as the weather was reasonable. I did washing and ironing, cooking and washing-up and generally all the household things that I wasn't doing when I had my parents and father-in-law looking after me, and it all went well.

On Friday I went into the office to see my boss. We had a great chat about everything that had happened in the department while I've been away and then we arranged that I will start back to work on Wednesday 5th September! At first I will do just a couple of hours and then increase it slowly over a few days, until I'm working my full hours. I'm very excited about going back to work - I realised just how much I've missed it.

So I'm feeling pretty much Back to Normal from the range of movement I have and also in how I feel physically. I mean, sometimes I do things without thinking, like pulling the bathsheet around me when I get out of the shower and then I get a tweek and quickly realise that I still can't do some things! Or at least that I have to make those movements carefully.

I have no problems walking on the flat and I've tried walking up flights of stairs instead of taking the lift (in the multi-storey car park, for example) and it doesn't cause me to get breathless any longer.

Yesterday we went swimming as a family. I mean I didn't really do any swimming - it was more for our daughter to show off her own swimming skills! But I did manage a few strokes, even though I wasn't keen to do breaststroke, as it didn't feel comfortable. It probably would have been fine, but I didn't want to risk it the first time.

By the end of this week it will be 12 weeks since my surgery. I had heard that it takes about 3 months to get over the surgery and, for me, that will be about right.

My Hospital Story - Part Three

Today it is already two whole months since my surgery and so high time that I completed my Hospital Story. It seems a bit odd to do so, when my recovery is going so well, but to me, the story seems unfinished otherwise.

Day Five - Day Three after surgery

It was all very well to arrive back on the main ward, but I'd had no opportunity to get out of bed and stand on my own legs, so I needed support initially even to get to the toilet (which, from my bed, was very close!).

It was very difficult to move about at all, as I was still attached to the pacing machine, which I wore in a small fabric bag around my neck. The attachments to the central line in my neck also got in the way constantly. Even having a wash was a major event because of these being in the way and, after my visit to the wash-room, I was completely shattered!

My iron levels were particularly low following my surgery so it was decided that I needed a transfusion of blood plus one of iron. That was done late in the afternoon, which restricted my movement even more, but gave me the opportunity for a good rest.

My appetite was starting to return, even though I still asked for a small portion at all meals, and I really enjoyed the food today.

Day Six - Day Four after surgery

I didn't sleep well during the night, as the ward was really warm and it was quite noisy.  I managed to wash, even though I was still finding it really difficult. The nurse changed my dressings and did an ECG, during which some junior doctors, who were visiting my neighbour, managed to pull the curtains around my bed right off the rail!

They scrambled around trying to hold up the curtains around me, unfortunately then managing to knock over my water jug and spill water all over the floor! The nurse was not amused, but all of us patients were hugging our chest cushions with laughter!

I had a further blood transfusion, which allowed me to have another good rest, and later on I also had a chest X-ray, which gave me a little trip in a wheelchair away from the ward.

Day Seven - Day Five after surgery

I had another awful night's sleep, eventually managing a few hours after listening to music on my ipod for a while. There was a more chilled atmosphere on the ward first thing, and I enjoyed my breakfast and chatted to the other patients.

At 11am the nurses started to prepare to take out my pacing wires - I had to have a full hour's bed rest after it and have my blood pressure monitored throughout. I was dreading this, as I thought it might be as awful as the drain removal, but it was over before I'd even noticed!

As that was going on, the team of doctors arrived to do their round. Everything has gone well with my surgery and it looks as if I can go home in another 4 days!

After that the nurses took out my central lines, which meant lying very flat and very still throughout and also for some time afterwards.

I had an ECHO appointment after lunch and after that my visitors arrived - it's all going on today, after the comparatively gentle start to the day! My mum helped me wash my hair, which has made me feel loads better.

I am also modelling some attractive green anti-embollism socks, which gave the ward a laugh - not what I need to be wearing when it is so warm, but still...

Day Eight - Day Six after surgery

Woke up to a really sunny and warm day - after getting weighed and having a cuppa with the other ladies, we all managed to go back to sleep until 7.50am, when the hunky French doctor appeared to brighten our day!

He definitely cheered up my day as he told me I might be going home as early as tomorrow!  He came in a good few times to the ward and even the nurses were flustered.

I had to have blood taken from my arm today, now that the delightful central line has been removed - it did have its benefits, after all!

I'm moving about a lot more today and walking regularly to get drinks, as well as to the most distant wash-rooms and to the day room to watch some TV.

I saw another of the doctors later today and he confirmed that if everything stays on track, then I can go home tomorrow as it is Day Seven after surgery!

Day Nine - Day Seven after surgery

I had confirmation by 10am that I'm going home today - I had a glorious shower and then the nurses arrived to take off all the dressings etc. I managed to put a bra on, which was a bit uncomfortable, but seems to hold everything together somehow!

There was no need to wait for any medication as I'm only taking painkillers and iron tablets and I have those already and the discharge letter is done - just need to wait for my lift.

Of course there was someone waiting for my bed, so I enjoyed my lunch and then packed everything up and, after saying my goodbyes, went off to the day room to wait for my husband.

My long-dreaded hospital stay was over and I have no idea why I was so worried. The whole team that looked after me, from registrars to nurses, from porters to surgeons, were totally first class and I couldn't fault them one bit.

*******

I was discharged at 2pm on Friday 15th June, exactly one week after my surgery had finished.

Post-Op Check-up Thumbs Up!

Today it is already 8 weeks since my surgery and yesterday I had my post-op check-up at the hospital to find out if the replacement valve is working as well as it should be.

It was quite an expedition in itself for me, as I travelled into London by train, met my husband at his workplace and then we went by tube and by foot to the hospital. I was expecting that it would be really difficult to travel in London because of the Olympics, but it was reasonably quiet.

We saw many Olympics volunteers, noticable due to their distinctive uniform and all the bright pink direction signs on the station platforms really made me wish that I was going to an Olympic event.

At the hospital it went as out-patient check-ups usually do - lots of hurrying about between different departments & sites to get tests done, before rushing back to get in the queue to see the consultant. I had an ECG (very quick as usual), an ECHO (very slow as usual - as well as slightly uncomfortable, as my chest is still very tender) and a blood test to check my iron levels.

The best thing about the out-patients' waiting room was the TV showing the Olympics, but we didn't get much viewing done as the consultant called my name after just a few minutes.

Basically, all is going well with the valve - it is working properly. There is no fluid around the heart, no infection in the wound and there are no arrhythmias.

I just need to continue my recovery by taking it easy, but by building up what I can do until I am back to normal.  This means I can drive, start doing normal household tasks (but still no heavy lifting!) and starting thinking about when I will be ready to go back to work and to prepare for that.

For the first time since about 2004, I left a check-up feeling positive and up-beat! Long may that continue!