Meet the patients: Daniel Kemp
I was born in 1984 with a complex congenital heart condition called tricuspid valve atresia with a ventricle separation defect. At the age of three years I had my first heart operation under the clinical care of Dr Philip Reese and a fabulous surgical team at the Great Ormond Street Children's Hospital (GOSH) in London. After the operation I lived medication free up until 2005 when I developed a condition called atrial fibrillation (AF), I also developed a thrombus or blood clot in my right atrium. The doctors decided to put me on beta-blockers, which I was unhappy about at the time as I had a bad reaction to them. Please don’t be alarmed by this. Each patient is different and just because I had a bad reaction to the medication doesn’t mean you will. The bad reaction I suffered was a noticeable limitation in my ability to exercise. I suffered from continuous cyanosis. I’ve remained under the care of GOSH most my life and then transitioned over to the London Heart Hospital. This is where young people with a congenital heart condition naturally move on to when they reach adulthood. The Heart Hospital is my long-standing hospital for my cardiac care.
The Southampton years
In 2007 I was referred to Southampton General Hospital to undergo a operation known as a TCPC (total cava pulmonary connection). This is a heart operation that the team at Southampton have special expertise and experience with. I was under the clinical team of Dr Gruschen Veldtman and Dr Tony Salmon and the surgical team of Mr Marcus Haw. The doctors explained that the operation was rather serious. Apart from a small risk of paying the ultimate price, I could expect be laid up for a few months. However from my point of view nothing could be further from the truth. Mr Haw’s and Dr Veldtman's teams did a fantastic job. I was in hospital for only 13 days and went back to Uni the following weekend to continue my studies. I was aware of the need to take it easy and if I had any pain to pop a paracetamol, but apart from that, well no tiredness, no ill effects at all.
I'm as fit as a fiddle, I have very few limitations, I can walk, run, swim to an extent that would be classed as acceptable even by 'normal' standards. Yes the Sword of Damocles does and will always be hanging over my head, but for now all is well and I’m enjoying life to the full.
Anyway that is enough of my medical history. How can my experience help others, now and in the future, who were born with a heart condition? Below I’ve listed a few tips that I hope will help.
Warfarin - I'm on it and I know many of you will be also. I made a BIG mistake and did not manage it properly, as a result a got the thrombus. I would therefore suggest an INR self-testing machine. These are great bits of kit. They allow you to check your INR at any time or in any place. The major upside of this is safety. Making sure that your INR remains within the therapeutic range is very important when you are one warfarin. An INR machine allows the patient to obtain an accurate INR within minutes. It also means you don't have to go to your doctor or hospital for a blood test as frequently, thus making you more independent and having to take less time off from college or work.
Insurance - Always, always make sure the policy covers your pre-existing condition. Shop around; you will be surprised how much they differ. And never ever leave the country without travel insurance that covers your heart condition! Don’t rely just on having a European Health Insurance Card. You need to take out your own travel insurance!
Diving - I have a gas filled pacemaker, and I can go no deeper than 30 metres. I know it is a strange one but check with the manufacturer they will have the details for questions like these.
Know your condition and make note of what you, your family and GP and dentist need to be aware of.
Listen to the advice of the doctors and nurses, talk to them if you are having problems with the treatment, there are usually other avenues to explore.
Frequently asked questions
Has your condition limited you or what you want to do for a career?
Yes, I wanted to be a pilot; however I would not pass the medicals. As this was evident from the word go my career has not suffered, I'm a engineer in the oil and gas industry.
Have you had heart surgery or any procedures and how did you feel about it?
Yes I have has two open-heart operations, the first one I was too young to remember and the second one went off without a hitch.
Do your scars worry you at all?
No, I have never had any negative comments from a girlfriend or friend.
Has it been difficult getting insurance, such as travel insurance?
As above getting insurance is not a problem. It is more expensive but if you shop around you will find it's not extortionate and the British Heart Foundation (BHF) and Grown Up Congenital Heart Patients Association (GUCH) have a list of ‘heart patient’ friendly insurers.
What have been your goals and achievements and did your heart condition hinder you at all?
I have not really set any goals, my heart condition has had little cause for me to set goals, I have the generic one to be a success in life, but that if not fuelled by the fear of having a short one, the extent of my symptoms are that I'm clearly not the best at cardiovascular exercises but it does not really hinder me in my day to day activities.
What do you enjoy doing in your spare time (hobbies/interests)?
Walking and hill walking are things that I like to do as hobbies, to add to my fitness regime I also go to the gym to row and do a range of muscle exercises.
If you have been recently diagnosed with a congenital heart condition I cannot emphasise enough how good the Adult Congenital Heart Team at Southampton General Hospital are: Dr Gruschen Veldtman, Dr Tony Salmon, Dr Aisling Carroll, Mr Marcus Haw, Lynda Tellett and Melanie Finch
Equally the same goes for the team at The Heart Hospital in London: Dr Shay Cullen, Dr Fiona Walker, Dr Justin O’ Leary, Ruth Brooks and Nathalie Picut
Both cardiac teams are fantastic. Not only are they top of their tree in a medical sense but they are truly nice people to be around. They’re also really friendly and passionate about their work. These are not just my words but the views of just about every patient I have ever met at the hospital! These are great qualities to have in a adult congenital heart team, because for a lot of you, just like me, you will see them yearly for the rest of your life.