Meet the patients: Olivia Winstone

The Diary of a Congenital Heart Patient

I was born in 1986 with the congenital heart condition Tricuspid Atresia. In 1987 I had a very successful Fontan operation at the Royal Brompton Hospital which enabled me to live a very normal life, symptom free, for many years. When I was 16 years old I began suffering from episodes of atrial tachycardia, and gradually, over the years, these episodes became more and more frequent. Between the ages of 16 and 23 years old I had three long catheter ablations (6-8 hours) to try to suppress my atrial tachycardia, but each time they were slightly less successful, in that the intervals between them were decreasing. In January last year I experienced my most aggressive and compromising arrhythmia yet – it was the first time I really felt my life was threatened by my condition - and it became clear that a more major solution was required. I had a rare operation, called a Fontan Revision. This converted my previous Fontan Circulation to a Total Cavo Pulmonary Connect (TCPC), so my venous blood doesn’t return to my heart but goes straight to my lungs. Despite having had all my previous (and exceptional) treatment at the Brompton, I discovered that Southampton General Hospital had actually performed 49 TCPC Fontan Revisions with a great success rate, the most in the country, and so I decided to have my operation at this fantastic centre of excellence under the care of Dr Salmon and Mr Haw.

Part of my preparation for this major surgery was to see a psychologist and I found these sessions extremely helpful. There’s something very liberating about being able to talk about your emotions, your deepest and darkest fears, to someone who is not your family or friend, but someone who understands what it feels like to face something as big as this. Because let’s face it, even when the odds are stacked in your favour, you worry about what could go wrong. One of the best things to come out of our meetings was the idea of keeping a photographic and a written diary during my stay in hospital. My psychologist explained that if I could get my family or nurses to write a daily entry and photograph my progress it would help me to piece together my experience afterwards. To me this made a lot of sense – the days I was going to spend in hospital were going to be some of the most important of my life, and perhaps because of drugs and anaesthetic I would not be able to fully understand what was going on. Because of the person I am, I knew one day I would want to know what had happened to me during the most momentous two weeks of my life.

I finally read my diary a month after my surgery and found it both emotional and beneficial. So I have taken some diary extracts written by my family and myself. Obviously, most of my entries were written in hindsight but whilst I was still in hospital. I hope they will give you an honest but also a reassuring account of my experience...perhaps something similar to what you will experience under the outstanding care of the Southampton Cardiac Team.

Tuesday 23rd November - DAY OF SURGERY

After a rather nervous wait, I was given a date for the surgery – 23rd November 2010 – the day before my 24th birthday!

OLIVIA: 05:24am: “Right now I actually feel ok, but I know that when my family arrives at 6am that will be hard as I don’t like the idea of saying goodbye. But I really think between the excellent team, the support of my friends and family, and my determination, we can do this, and do it really well.”

I was due to go down for my surgery at 8:00am but unfortunately it was delayed by five hours due to an emergency operation.

DAD: “At last, 5 hours late, the trolly came. We said our goodbyes  again – love and tears. But once you were gone I did feel strangely confident...a confidence generated by the quiet reassuring confidence of Mr Haw and the whole team.”

Apparently the operation actually started around 2:30pm, and thankfully it was very successful - straight-forward and shorter than Mr Haw expected.

TOM (BROTHER): 7:38pm: “...the nurse pops her head around the door of the intensive care waiting room to say you won’t be ready for an hour but it’s all gone well. Just like that... I don’t think she has any idea how it sounds to us because I’m sure she gets to say it all the time, but for us and my sis it’s a life changer."

DAVE (STEP-DAD): “Very few people experience in a lifetime what you’ve gone through during the last few years; very few people experience in a lifetime what you have experienced today.”

Wednesday 24th November

I came off the ventilator at 1:45am – much quicker than anyone had hoped. I don’t remember being ventilated or the ventilator tube being removed at all. And over the next few hours I only have distant, fractured memories of my family talking to me and stroking my arm.

MUM: 3:10am: “It’s your birthday darling Olivia. There’s much to celebrate in so many ways – it just doesn’t feel like it at the moment. It’s so hard to see you in pain and distress gradually coming to out of the anaesthetic.”

MUM:  8:45am: “Goodness, how things have moved on, and continued to improve. More lines out, sitting upright, drinking water and juice!”

ME: After being moved from ICU to HDU after 23 hours “I remember telling Dave it was a massive anti-climax – you do this big thing and then no one bothers to look at or take care of you. I now know that obviously wasn’t true, but that’s how it felt.”

My psychologist warned me that sometimes patients feel rather defensive, or even aggressive, towards their doctors and nurses immediately after their operation as their body has gone through such a trauma that they almost blame them for their discomfort. I certainly experienced these emotions at first, but they passed quickly when I could appreciate the fantastic work that had been done!

Thursday 25th November

My psychologist had also explained that patients sometimes ‘don’t feel quite like themselves’ and can experience a sense of helplessness after surgery. When she explained this to me I found it very hard to actually imagine what that would feel like. Now I understand what she meant...

ME: “I don’t remember much about this day aside from being awake when Dave came early and feeling dismal. I couldn’t see how I was going to get through this. I had completely lost faith in my self and my strength to fight. I felt like I had nothing more to give and there was a mountain to climb. I could no longer see myself home for Christmas, and the worst part was that I felt there was nothing I could do to change that. Ever since the op people, even Dr Salmon and Mr Haw, had told me the surgery had gone fantastically well and that I was recovering brilliantly. It wasn’t that I thought the doctors, nurses and my family were lying to me as such, but I just thought they were sugar-coating the truth to spur me on. Because how could I being doing so well if I had lost who I was? My body may have been doing ok but my mind was miles behind.”

Having had a bad morning, I was then seen by the physiotherapist later on in the day. She got me doing arm, leg and breathing exercises and even had me sitting up in a chair. It’s amazing how each of these small steps felt like a huge victory after what I had been through. Today I also had the catheter and my central line removed and my dressing changed.

THEO (FIANCE):  7:40pm: “I can’t believe what I’m seeing! You’re sitting in a chair next to the bed, smiling, hair brushed. You look incredible. And apparently it wasn’t even that painful to move you!”

Friday 26th November

ME: “For me this day was dominated by the most debilitating, catatonic tiredness I’ve ever experienced. I recall being unable to stay awake talking to people or to eat. Worst of all, I really couldn’t focus...Almost unconsciously I began to question what my eyes were like before the op – maybe they’ve always been this bad? And if not, well there was nothing I could do about it.”

I want to stress that obviously everyone is very different in the way their body responds to different drugs – unfortunately I just happen to be rather sensitive! By this stage the pain had eased up a little and I felt able to reduce my dose of painkillers in the hope this might make me less tired the following day...

Patient Olivia Winstone

Saturday 27th November

ME: “OMG! I can see! I actually feel like me! Waking up and putting my glasses on and actually seeing with clarity felt amazing! I sat out of bed for breakfast, and for the first time I really enjoyed it. I recall chatting with Dave and knowing it was me talking – a wonderful feeling...The highlight of the day, which gave me a real boost of fun and normality, was watching the X-factor through my brother’s iPhone app! Today was a very good day...I felt I could achieve a bright future. I had seen the light at the end of the tunnel, and from then on it kept getting brighter. I was back!”

Monday 29th November

ME: “Today I was faced with a moment I’d been imagining and worrying about for months...the removal of the dressing to reveal my scar beneath. As they removed the dressing I started getting all hot and anxious. But it was definitely much neater and thinner than I expected. It looked like Mr Haw had just drawn a pen-line down my chest – the wound certainly doesn’t reflect the incredible reconstructive and invasive job he did beneath.”

THEO: “This is your best day yet. You seem completely yourself. You’ve been for a walk up and down the HDU corridor. This is the next big ‘step’! You’re progressing so well. You have also had your dressing off today and the scar looks amazing! I can’t believe the work they did underneath it! INCREDIBLE!”

Today I was also moved from HDU on to E4 Ward – another big step in the right direction...

Wednesday 1st December

As I continued to improve and it looked hopeful I would be discharged in the next few days, I met with the Cardiac Rehabilitation Nurse who was great at answering all my questions from caring for the scar to driving to diet. This was all very reassuring, and best of all she told me that for the next few weeks I could eat whatever I liked to help my body heal! So...

Patient Olivia Winstone and familyDAVE: “It’s 7:45pm on Wednesday evening and we’re all tucking in to takeaway pizza in the day room!”

Pizza has never tasted so good!

Friday 3rd December

Over the last couple of days I had several echos and a CT scans to check there were no blood clots and that the fluid around heart and lungs was reducing. All the results came back good. I was almost ready to go home. It was time to say my ‘goodbyes’...

ME: “Dr Salmon stepped forward to shake my hand. How could I possibly thank this man, who has demonstrated such compassion, humanity and dedication, enough? I did my best; I told him it’s been ‘fantastic’ being cared for by him and his team. But when someone changes your life in just 13 days, when they give you the gift of life and a bright, healthy future, words will never and can never be enough. The people who have cared for me here are all so passionate and genuine, but what really defines them is that they dedicate their whole lives to improving the lives of others. They really are unique.”

Saturday 4th December -  DAY OF DISCHARGE

ME: 8:44am: “I’m driving home for Christmas! I’ve been awake since 4am because I’m so excited! Sitting here now I can’t believe this huge scary thing; this thing that sometimes felt like it would swallow me up, is over. I’m so close to the finish line now and I can really imagine a normal life after my recuperation. Although, in some ways, I don’t think my life, or even the lives of my family, will ever be the same again. Not wanting to sound like an X-factor cliché but over the last 13 days we’ve all been on an incredible journey with massive high and lows that has certainly taught me, and them too, that life is a very precious gift; it should never be wasted or taken for granted, and to be given that gift again feels incredible. I now have an even stronger desire to live a full life, full of adventures.”

Patient Olivia Winstone and partner

Now...

It is 11 weeks now since my operation and I am continuing to recover extremely well. Even now my time in hospital feels like quite a long time ago – perhaps because the scar has already started to fade a little, and perhaps because I feel so totally different to how I did in the first three days after my operation – both in body and in soul. My condition has never held me back in the past, and I am absolutely confident that it won’t in the future. As you can see from the photo, I was already having fun on New Year’s Eve, just five and a half weeks after my surgery!  In a week or so I will return to my job as an active, passionate, theatre education workshop leader (although I will be starting with some office work first, of course!) I hope the extracts from my diary show you that, yes sure, there are some tough times when going through such major heart surgery, but for me certainly, they were brief. What stands out in my mind is the first time I sat up, the first time I walked, the first time I had Domino’s Pizza and, most of all, going home. Now I am filled with an overwhelming sense of relief and pride that I got through it so well. No two cases are the same, and GUCH patients can never really be compared...that’s perhaps the toughest thing about waiting for your surgery - the fear of the unknown. There is no crystal ball that can guarantee what will happen in your future. All I can tell you is, whatever your story, whatever your condition, the cardiac teams at Southampton General and the Royal Brompton are absolutely exceptional. The everyday heroes at these centres of excellence really do give the gift of life to people like you and me.

By Olivia Winstone