Meet the patients: Emily Foote
I was born with a heart condition called Tetralogy of Fallot (ToF). Ever since I can remember I have always been aware that I am 'special', and in fact I think I have always used my condition as a benefit to me! It can be a good topic of conversation at times so I use it to my advantage - people are interested in people who have something 'abnormal' about them, or who have experienced something which most people find terrifying (open heart surgery!). I am a firm believer that you must try and see the good in everything that appears to be bad. The strange (and ridiculously lucky) thing about me is the fact that so far I have been totally symptomless, therefore it does come as a shock when I tell most people! It also means I can tell people in a (generally) positive way. For this reason I see many benefits in my condition - it gives me all sorts of things to chat about to people. I also think that being born with something faulty definitely makes you more aware that life can come at a price, and that you never know what is around the corner. So many of my friends take risks, and think they are invincible. I too, have in the past taken a few risks that have been unwise, but I have always been highly conscious of the fact that life is not forever, and I am a firm believer, as I get older, and as I recover from open heart surgery, (round two), that it is so important to appreciate life, and to get the most out of it, fulfilling ambitions and overcoming hurdles. I know this must sound like a cliché, and of course this is not something I think the whole time, but it is my general outlook on life.
For me, I intend to lead an incredibly active life for as long as I can, and hope that in doing so I can raise money for Southampton Hospital, and the British Heart Foundation, because without both these I would not be writing this today. I am so grateful and fortunate, that I live a very 'normal' and healthy life, and so my goals are to do as many sporting events as possible and in so doing raise money for those people who have looked after me so far in my life, and those who I will rely on in the future.
On February 9th 2010 aged 24, I underwent my second open-heart surgery. When I was one year old I had my first 'corrective' surgery and three out of the four problems were corrected. In time, my heart grew (from pressure I believe) and my right ventricle became dilated, and my blood did not oxygenate and deoxygenate properly. I have been incredibly fortunate to be asymptomatic for my whole life. Even when I was born it took three days to diagnose my condition, after being unable to hear a heart beat! I was however always, happy, chubby and pink, unlike the stereotypical 'heart condition' baby. I knew one day I would need a new pulmonary valve, in order for my right ventricle to shrink back down, for the blood to flow properly, and for my heart to shrink. It was decided that it was the 'right' time (despite feeling absolutely well with no noticeable symptoms). So In February I underwent a successful pulmonary valve replacement, I now have a bovine (tissue) valve and this is hugely exciting. Having this kind of valve does not require me being on Warfarin.
I will need another pulmonary valve eventually. Over time the bovine valve will calcify and become narrow. However, a future procedure will likely be performed via access to an artery in the groin using a catheter based treatment. There is a possibility after that I may require further open-heart surgery. This is what I have been told will likely happen in about 25 years time, but who knows what science will have brought us by then and if I can do as much as possible now, to raise money so that the doctors have the funds to improve medicines and techniques, and learn more and more, then indirectly I feel that I am helping others by hopefully giving them a better start at life, and hopefully some of my donations might indirectly help me in the future.
I feel amazingly blessed that all went well with my surgery. Most the time I am hugely positive and am lucky enough to forget about my condition in day to day life. I make sure I live a healthy lifestyle by taking regular exercise and eating healthily.
With regard to my scar, I feel life is too short to be really worried or concerned about it. Having said this, I do think it is ugly and I would prefer not to have it on my chest, but within a year it will fade, and hopefully look very similar to the one I had for 23 years (and never even noticed). I have bought some new high top t-shirts, mainly because I do not want other people to feel uncomfortable looking. I would say I do feel self-conscious and there have been times in the last few months that it’s bothered me, but I just remind myself that I need to look at the bigger picture, and realise this is a very small price to pay for good health. Sometimes I use a cosmetic camouflage cream/gel to help mask the appearance of the scar, but with the passage of time I know the scar will fade.
Sometimes I would worry about my heart condition following a hospital out-patient appointment. I think it’s because the reality hits home and not just a topic of conversation. This is when I realise everything is not perfect. It's a big reality shock sometimes. The only thing that really worries me is not having children - but if this is the case then there are so many other options. At present it doesn't look like this would be a problem (without help) but I know it will not be totally straightforward, and this does scare me, because I do hope at some point to have children. If it is not meant to be then I shall just have to deal with it, and look at other options - but that is my greatest fear as a result of my condition. I know that this is an issue that many female patients with a congenital heart condition have faced. So I’m not alone!
The only times I have ever really been aware of my condition was when my father pulled me out of a long race at sports day in blistering heat (that probably even ‘normal healthy’ kids should not have been allowed to run in- it was exceptionally hot that day!). The other time I recall was when I was told I could not be in the army or an astronaut. I am not upset about either of these things really. Perhaps it would have been exciting to have been able to dive (I cannot do this either), but snorkelling is great fun! I am too afraid to do a bungee jump, so I don’t mind that I’m restricted from doing this.
I was however, upset when I was told I could not run a marathon or even a half marathon (this would put too much pressure on my heart), I am hoping though that since my operation, my heart will be in a much stronger position to enable me to start running half/full marathons. I really hope to be able to do this, because then I will feel really proud that my body can do this, and I will be able to raise money for the great causes I mentioned earlier. My fingers are firmly crossed that I am now strong enough. I certainly feel strong enough, but I felt strong enough before my valve surgery (and was told it would be foolish) so I can only hope and stay positive until I see my consultant next for review.
My heart condition has not limited me in terms of my career. I have a busy job in London which I enjoy a lot. I work hard and play hard- you shouldn't miss opportunities in life. My advice to another young adult born with a heart condition would be to do the best you can whilst your health permits. Make the most of every moment and every opportunity.
The team adult congenital cardiac team at Southampton General Hospital are excellent. We are so fortunate to have a team at the leading edge of medical science. So if you are a new patient or are about to make the transition from paediatric to adult care, be assured you’re in very good hands!