TEEN ZONE
The T-Zone

My Story
We have FOUR My Stories now. Keep 'em coming!
Our Stories: Greg - Thomas - Lucy - Nathan

Our first story is from Greg

Hi, I'm 16 years old and I was in the LGI in the summer of 2003, for a Ross procedure which involves swapping a couple of valves around.

I find it hard to remember the few days before my operation. I can vaguely remember, my dad coming to collect me from school with the news that they wanted me in theatre the next Monday. It was a bit daunting to know how soon it was but having known about the need for the operation all my life, I was definitely looking forward to getting through the it and in a few months time, being able to do sport and not have to worry about pushing myself too hard.

I totally trust the consultants I see every few months in out patients clinic - believe me, those guys are the best in their field and they have your best health interests at heart (bad pun, sorry). The surgeons are also world class and I can guarantee that fact, because I tested them by having a long operation and giving them a few challenges along the way.

I came round slowly (after having a nice extended ten day nap, nine and a half days longer than usual!) as the drugs gradually wore off. The nurses were fantastic! Especially that young nurse who had to put up with me calling for a drink every five minutes, at night too! Once I was aware of my surroundings, the physiotherapist started to help me to move around and regain a sense of balance. As I am writing this I am remembering one stage in my physiotherapy where I had to stretch for a banana to improve balancing on my feet! The physio managed to get my skinny little legs (skinny due to not eating or moving around for 2 weeks) walking again in just a few days, a superb doctor and one of the most caring people I have ever met. All the nurses are brilliant and very kind and not just with me but with my whole family.

My nutritionist was constantly searching for new healthy and tasty food. A little tip nutrition wise; make sure you get someone (i.e. brother or sister) to run to Marks & Sparks to get some juicy melon pieces! I'm sure my recovery wouldn't have been so rapid if it weren't for M&S!

Anyway, they fixed me up brilliantly and a few months later I successfully completed my bronze Duke of Edinburgh award including the overnight expedition. After that I did my work experience at Rolls Royce working on jet engines and then gained 11 GCSE's. The achievement I am most proud of though, is that weeks after coming out of hospital, I started to build a kit car - shown in the photo. I now can't wait till my 17th birthday so I can pass my driving test and drive legally!

As for the scar, I love mine. I've had one all my life as I was only three days old when I got my first one. It's a reminder of all the wonderful people I've met who have enriched, and actually saved, my life. And anyway, friends say it's cool and very macho! I am proud to have been part of the Ward 10 gang for those few days and I miss all the people there. Personally, I can't thank the fantastic team at LGI enough for what they have done for me.

Our second story is from Thomas

My story begins when I was born - obviously I don't remember any of this, but have been told about this.

I was born in February 1991, 4 days late and a healthy 8lb 11oz. My mum soon noticed that I wasn't feeding properly, was breathing rapidly and go purple when I cried. I was checked over 4 times in the 5 days I was in hospital and mum was told I was fine - no problems at all, so was discharged with a clean bill of health.

When I was 9 days old I was really ill and rushed into our local hospital in Chesterfield before being transferred by ambulance (blue lights and sirens) to Killingbeck Hospital in Leeds. My parents were told I had aortic stenosis and a co-arctation of the aorta and needed to be operated on straight away. My first op at 10days was a co-arctation repair. The second op was when I was 4 weeks old which was open heart surgery to split my deformed aortic valve. Both ops were done at the Freeman Hospital in Newcastle.

I had regular check ups at Leeds and led a relatively normal life, knowing at some point I would need a valve replacement.

When I was 7, during a routine check up, my consultant said that my valve was failing and was ready to be replaced. Even though I had no symptoms I was told it would need doing within 6 months. We waited until after my 8th birthday and went in, in March 1999. I didn't really know what to expect. I was a bit nervous but not really scared - my parents were in a right old state though!!! I don't remember going to theatre - the pre-med must have worked well, but I do remember waking up on intensive care, wired up to millions of machines. My parents were told that I would probably be asleep for up to 24 hours but I was awake about an hour after the surgery. The op I had was a Ross Procedure which means my old aortic valve was taken out and replaced by my own pulmonary valve. I then had a human donor pulmonary valve transplanted.

On intensive care I can remember machines bleeping all the time. Also I was very thirsty and kept demanding drinks. I was only allowed to suck on ice cubes to start with and when I could eventually have a drink of orange, I gulped it down and threw it back up!! I can also remember the physio coming regularly to 'thump' my back to clear my chest. I was never pleased to see her and was quite unpleasant to her!

I spent 2 days on PICU before going onto the ward. On the 4th day after my after my op my lung collapsed and I had to go back into theatre. I stayed in hospital for 11 days before going home.

I had a year of feeling really well and no medication. We moved house and my parents started to relax a bit.

During another routine check up with my consultant, he found that my new aortic valve (old pulmonary valve) couldn't cope with the extra pressure and began to fail. We were told that I would have to have it removed and a mechanical valve fitted.

This was done in Newcastle again in June 2001. The 8 hour op went well and I was out of intensive care in 2 days. I was more nervous about this op than than last time as I was more aware about what would happen.

It's now over 4 years since the op and I'm doing fine. I take warfarin every day to keep my blood thin and stop clots forming round my valve. My new valve ticks quite loudly and sounds like a noisy watch. I'm used to it now and I don't notice it, but in a quiet room, other people sometimes comment. I do regular blood tests at home with my INR monitor and have only had to be admitted to hospital twice in all this time to go on a heparin drip as my INR had dropped too low.

Even though I have gone through a lot, it was worth it when I got to meet the Kaiser Chiefs on Ward 10.

I now play tennis regularly and can do some sports - although only non-contact sports. I am also learning the electric guitar and play along with my signed Kaiser Chiefs CD - any chance of another meeting???!!!

Update from Thomas

A lots happened since i had the surgery last summer, looking back on how I felt after the op I wouldn't have thought i'd be running around London studying for my fashion degree. I've never felt better!

 I love the scar, because of it there's no excuse for conversation to run dry. The best thing about the scar is that one of the fashion students i'm studying with at St. Martins picked me to model some low cut vest tops in her collection at London fashion week. You can see the pictures at on the Vogue website (click here for the direct link- I'm 2nd row down in the middle) i'm the guy wearing a white vest top, cap, white shorts and trainers. It was well exciting.

The surgery was nowhere near as bad as I thought it would be. The pre-med was fantastic I felt like i'd been drinking zambuka shots all morning (unfortunately it wasn't zambuka) the last thing I remember before the surgery was feeling really chilled out and I can't even remember going to sleep. I suddenly felt a bit cold and my chest felt bruised but it wasn't painful just a bit uncomfortable.

I became aware of machines beeping around me, the nurse informed me of their various functions which made me feel less anxious and less like I was an extra in Casualty! I now realised the op was over. Most of my initial recovery time was spent asleep, as soon as I was fully conscious (after a day or two I think) I was encouraged to eat and move. At first only to my chair but before the week was out I was up and walking. I found the recovery period surprisingly fast considering what i'd had done. Now i'm fully recovered i'm able to do everything I could do before but now my hearts more chilled out with the new Titanium valve and as a result my hearts getting back to its normal size which is great!

I'm on a low dosage of warfarin for life and have just been taken off my daily dosage of Atenolol which was initially given to help my heart cope with the surgery. The warfarin is no great burden its just a couple of tablets to be taken at 5.30 each day. It's a routine i've got used to like brushing my teeth or putting contact lenses in, it's become 2nd nature now I don't notice it.

Our third story is from Lucy

Hi, I am 15 years old and in Year 11 at school and getting ready to do my GCSEs.

I came in to Ward 10 for my operation in November to have my aortic valve and artery replaced. I came to one of the pre op meetings in May, when I got to look round the ward and intensive care unit.

What did I think? - Well the meeting was good in one way because I got to see where I would be and to meet some of the nurses who would look after me, but I did find it scary when they told me some of the things that would be happening to me. I asked quite a few questions, but sometimes you don't know what to ask. My Mum didn't. Though we both felt it was good to hear and learn about others situations.

Looking around, I felt half and half - half of me felt it was good to see the place and the people and the other half said, "whoa, do I want to know this? I don't like hearing it" Having said that, the nurses were reassuring and you got to see the funnier side of things.

I was pleased to see there were adolescent rooms away from the younger children, and the TV, CD player and computer were a definite bonus.

When it came to the day for me to be admitted to the ward, I felt nervous and at first I didn't want to talk to anyone. I was a bit mardy and stroppy (let me go home!); but as different members of staff came to talk to me, I began to relax a bit. And quite a few people did come to see me, such as nurses, doctor, physio (on how to huff and cough!), anaesthetist, surgeon (arrgghhhh). I didn't exactly enjoy hearing the details of my op, even though I knew it was important for me to know. ( Can I go home now?)

On the day of my op. I had a pre-med and I was apparently quite giggly but I can't remember it at all.

Next thing I remember was wanting a cup of tea in intensive care- difficult as I had the breathing tube in my throat at the time! No wonder everyone was laughing - I spelt it out in the air with my fingers!

After the op. I felt pretty groggy and had some pain. After a few days, things began to look up. All I wanted to do was feel like me again and go home (did I mention that?)

As I had an artificial valve fitted, I needed to be on Warfarin and needed my blood checked regularly. Being a mega Buffy the Vampire Slayer fan, I renamed the doctor "vampire" ( but with a soul like Angel).

Thinking about my scars - I am not too self conscious about my looks and am more concerned with what I can do. I did wonder what it would be like, I was amazed how neat and narrow and clean the main scar was once the scabs had gone. I have a boyfriend and I wondered if he would freak. I wondered what his reaction would be when he saw me with all my wires and tubes. I'm glad today he's fine about it. He was worried about me and is really glad I am well now - but he doesn't know his own strength or how though I look and feel 100%, ribs take a while to heal.

I found out I needed a second op., to have a pace maker fitted (hello - I want to go home). By this time I was feeling fed up. This one was minor though compared to the "biggie" and I recovered much quicker demanding a Burger King fries by tea time.

It was only after this op, and recovery that I was allowed off the ward. Mixed feelings again - wanting to be away from the ward but after all that had happened, felt a bit unsure at first. Then the shop and stalls downstairs and Burger King saw a few visits from me.

After a life time (or nearly four weeks) I was allowed to go home. I have never been away from home so long before and couldn't wait to go. Mum had stayed with me ( in a parents room) all the time, apart from one weekend, but now we were going together and I would at last see my cats, my room, my home and more of my friends. Hooray! Hallelujah.

I have been home a couple of weeks now. I am healing well and my scars are even beginning to fade a bit. It was traumatic and stressful, but I needed the operation. Its great not to get out of breath like I did. I am looking forward to the future now. Watch out world - here I come!!

 

Our fourth story is from Nathan

I’ll never forget that hot, sunny day when, as I neared my 13th birthday, we went for my yearly routine check-up. Up until then I’d never given these appointments much thought - “see you in a year” was what they had always said! However, this time it was different –

I had a condition which was quite unusual - a double inlet left ventricle and pulmonary stenosis – I had never had surgery before! I’d always been okay – occasionally a bit blue and sometimes out of breath, but I’d never known any different so it didn’t bother me. Then all of a sudden I was told that “we’d better get on and proceed with surgery Nathan.” I’ll never forget those words!

I found it really hard to cope and think my mum and dad did too (although they did not show it). I couldn’t sleep or eat and I didn’t think I could cope. All I could think was “why me?!”

I went with the whole family – my mum, dad, brother and sister - to see Ward 10, where were met the liaison nurse for teenagers. Then I then went to see the child psychologist. She helped a lot - we did relaxation and just talked, not always about my heart.

I had to wait a few months to be admitted for a catheter. I was quite worried, but looking back, a catheter is ‘easy peasy’. Unfortunately they couldn’t get all the tests they needed to do, so I had to have another!

Eventually, after my second catheter, they decided to do the surgery. Again things did not go to plan as my pressures were too high to proceed with the Fontan operation that they wanted to do. I was then hit with the bombshell that I would require two operations – firstly, the Glenn Shunt, which would hopefully reduce my pressures as part of the Fontan. Secondly, after a few years they would go ahead with the complete Fontan. I was put on the waiting list.

In the July, I got an invitation to go to an outward-bound centre in the Lake District, where I could meet other teenagers with heart conditions. My first thoughts were “no” because I’d be on my own and wouldn’t know anyone. At one of my appointments with the psychologist, she explained that she had been on one of these activity weekends and that mum and dad could pick me up straight away if I was not happy. I decided to give it a go and I’m so glad I did. Out of the eight teenagers who attended, five had had heart transplants - my open heart surgery suddenly didn’t seem so bad! Just meeting these kids made me realise that life is for living, so let’s get on with it!

I kept in touch with most of the teenagers from the outward bound weekend, including one lad who lived quite locally and came to stay with us. The months passed quite quickly.

It was a cold January day - I slowly walked home from the bus stop. “Why was dad home? As I took off my coat, mum said that she’d received a telephone call from the hospital and they would like me to check in on Monday for surgery at the beginning of February. (I had already had an operation cancelled in December! Unfortunately this does happen!). I wasn’t sure how to feel – I certainly wasn’t as shocked or as upset as I did on that occasion a couple of summers ago. Even though I didn’t want to do it, I knew that this was the only way forward.

I kept busy over the weekend, downloading lots of songs on my ipod (which became my saviour, as I’ll explain later) loads of my mates visited. My family and a few of my mates all went out for a meal on the Sunday, although I felt apprehensive – I did feel in control.

Mum, dad and I arrived on Ward 10 at about 3pm – “this is it”, I thought, “no going back now.” I had met the staff nurse who was looking after me before and straight away I felt more relaxed. Just seeing a familiar face made me feel better.

The tests then started: ECGs, a blood test and an x-ray. Lots of doctors and nurses came to see me and even some medical students had me lying on a bed - I didn’t mind! The anaesthetist came to explain everything and I thought it was good that the doctors talked to me and not just to mum and dad.

The surgeon and his registrar came for a chat to tell me everything about what was going to happen. I even had something to help me sleep on that Tuesday night.

When I woke up on Wednesday morning, mum and dad were sat there (in the dark). They came up to be with me when I awoke. My head felt jumbled - didn’t know how to feel, I was nervous, scared - you name it. The nurse gave me my premed and that was ace. Don’t remember much more after that - mum and dad said that I was well out of it!

I don’t remember much about intensive care. All I wanted was a drink and would they give me one? No! “Please can I have a drink?” I begged, to no avail. I was in intensive care for only 24 hours, all appeared to be going well and I was transferred back to Ward 10.

I had my own room, near the nurse’s station. It was nice to see my grandparents and my uncle when I got to the ward. I can’t honestly say I remember much of the next few days as I was on morphine and I controlled the pain relief myself (I just pressed a button if I needed more).

Things did not go to plan – my saturation levels were too low, I was unable to walk and I was having lots of medication, x-rays, scans and visits from doctors. It was decided that I would need the second operation in the next few days because my heart was not coping with the first stage and I needed to proceed with the complete Fontan ahead of schedule.

I had to have an investigation first to make sure the pressure in my pulmonary artery had dropped. I was asked if they could do this procedure under local rather than general anasethic (if it was general I would have to go back into intensive care) I’ll do it I thought! I was told everything, every step of the way. Everyone was so nice and the consultant told me that if at any stage I could not cope they would put me too sleep, but I did it without needing that.

It was decided that evening that everything was fine to proceed with the Fontan. The hole in my bottom two chambers needed enlarging too but I thought “they can do what they want, I’ll be asleep anyway.”

On the Saturday I had my pre-med and my cousin came to be with me (he had a heart operation when he was a few months old – he’s 18 now). We played on the playstation waiting for the trolley; I could hardly see the screen. ‘I’ve got to laugh (looking back) as I made the porter wait until we had finished our last FIFA match – “no problem,” he said!

It was strange doing the journey on the trolley again, so soon. I trusted the anaesthetist and I saw the surgeon as my best friend.

“I want a drink!” I shouted again. “Oh no,” the intensive care staff no doubt thought, “not him again!” “I need a drink!” I repeated. It must have been the morphine, but apparently I had all of intensive care in stitches, with my witty comments and demands for drinks! All wards in the LGI were scouted for ice pops - even the senior nurse went to Morrisons to find some! (quite hard at 3pm on a Sunday afternoon in February!)

You’re usually expected to be in intensive care for quite a few days. Not me! I was back on the ward within 36 hours. Everyone was saying how pink I looked. I slept quite a lot again, but found it quite hard when I had to have lots of blood tests (I found them harder than the operation). My iPod became my savour – it was on full blast for every test and I became known for bringing my “friend” (iPod) with me. I was told I would be on Warfrin (a blood thinner) for life. I took this hard, but I shouldn’t have - it’s actually not much of a problem, involving just a few tablets a day, and I have my own machine to do my blood test.

The nurses and doctors were all fantastic and I had so much support from all my family and friends. My cousin and best mate both stayed (as it was the school holidays), my mum and dad changed rooms so they had a family room and my brother stayed too.

Soon I was up and walking about, drains still attached (on my trolley) - no oxygen needed now! However, the waste from the drains was looking thick –“oh no, another test” I thought. I had chyle in my drains, which is something that does happen on occasions. Just to finish everything off I was put on a very, very low fat diet (5grams of fat a day for 6 weeks) – again, it felt like the end of the world, but was really nothing to get worked up about.

It snowed a lot while I was in hospital. I realised I must have been getting better when I was moved to the teenage room! The nurse came in and said “you’ve got a visitor Nathan.” Then in walked Leeds United player, Clark Carlisle! I thought “wow, so that’s why mum was trying to get me to do something with my hair!” Clark was a great chap - I had lots of photographs taken with him and he brought me a training top. If having a heart operation means meeting Leeds players – it’s worth it!

Looking back on my experience, I did feel that everything that could, did go wrong. However, on a positive note I have now had all my operations and can run, jump, play football without getting tired. It took some time, but I got there in the end – thanks to a fantastic surgeon, dedicated staff on Ward 10 and my parents, grandparents, and friends. Thanks everyone! I feel great.

Thanks for those, email us your story now!!

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Updated Winter 08/09