Rob Ward - Life with Coarctation of the Aorta (CoA)

Rob Ward writes about what life has been like for him with CoA

Who am I?

My name is Rob Ward, and I am 23 years old. I grew up in Surrey but have also lived in North Wales and Chester, as well as travelling to Australia and Indonesia for work experience and scientific research. I have a degree in Zoology, and am now a zookeeper specialising in Reptiles, Amphibians and Invertebrates. The reason that I am writing this is that I am an adult with CHD, specifically Coarctation of the Aorta.

My CHD history

A school health check picked up a heart murmur, and so I was then referred to a consultant. Further investigation then showed that I had CoA – narrowing of the main artery leading from the heart and supplying oxygenated blood to the majority of the body. In my case, for me it was most noticeable as the muscles in my legs weren’t getting as much oxygen as they would like! One of the questions that the consultant asked me before making the diagnosis was whether my legs would ache when I was running around. My answer was yes! It turns out that this can be a sign of CoA due to the restricted blood and oxygen flow. At least it gave me a chance to prove to my parents I wasn’t just being lazy if I moaned about walking somewhere. The CoA was most likely a congenital defect that I had from birth but that had gone unnoticed. No one else within my immediate family suffers from CHD.

I was referred to the paediatric cardiology unit at the Royal Brompton hospital in London, and they have since been responsible for my all of my cardiac consultation and treatment. Whilst I was still young it was decided that major surgery would be too dangerous. Cardiac catheterisation was used a couple of times for investigative reasons (basically inserting a very thin tube into my artery in my groin and leading it up to the heart / artery to have a look). The last catheterisation was intended to be used for angioplasty (blowing up a balloon to expand my artery), but it was deemed too risky at a young age as it may have caused damage to my artery.

Finally, at the age of 15 I was admitted in the Royal Brompton for surgery to repair/replace the narrowed section of my aorta. In the end the surgeons had to remove the section of the aorta that was narrowed, but the gap was too large to bridge with existing arterial tissue and so a Dacron graft was used. One of the reasons that this surgery waited until I was 15 is that it is less likely that I will need the graft replaced as I had less growth ahead of me compared to if I had been younger.

When I woke up from the surgery I was still intubated which was soon removed, and replaced with oxygen via a tube to my nose. As well as this I had 2 chest drains which I can only describe as being like 2 hose pipes coming out of the left side of my chest. There were also IV’s in my neck, hand, and a wonderful catheter so I didn’t leave the bed to go to the toilet.

Soon I was moved out of the intensive care room, and into another room. This was when my physiotherapy started. Something that I have not yet pointed out is that the CoA repair surgery meant that the left side of my chest including ribs was cut open to access my insides, leaving me with what is now a scar of about a foot long leading from just under my left armpit, round to the top of my shoulder blade. During the surgery my left lung was collapsed to provide easier access to my artery, this unfortunately led to me getting a chest infection. The physiotherapy involved me mainly trying to cough the muck out of my lungs…easier said than done when your left side is partially open and your ribs are trying to heal.

After a week in hospital it was time to leave, and for the stitches closing my chest drain holes to be removed. I was off school for about 7 weeks after getting out of hospital to allow my body to recover, and in this time had to make a couple of trips to the local doctors just to check my progress and change dressings. As this was just before my GCSE’s, I did get some tutoring in hospital as well as some at home to try and help me and make sure that I wasn’t falling behind. These were provided by both the hospital and the local council/school respectively.

Now, 7 and a half years on I am doing well. I still have the scars, and check ups at the Brompton every year or so. In the last year I have had an exercise test, 24 hour blood pressure, cardiac MRI and along with the usual ECG, ECHO and blood pressure tests. The extra tests were due to some high blood pressure readings, and I am now on Irbesartan (an Angiotensin II receptor blocker for those more medically minded) which lowers my blood pressure. Initially this medication did slow me down quite a lot, but now I am capable of being of being almost as active as I was before this medication. My high blood pressure is unsurprising due to the changes that my cardiovascular system has undergone during my life, and is unlikely to be attributed to any other to any other medical reason.

I try to keep as active as possible, and currently train Capoeira twice a week (a Brazilian Martial Art), usually rock climb once a week, and cycle to work every day. Over the past few years I have also done a lot of hiking and jogging to keep my fitness levels up.

As far as I am aware I will probably be on blood pressure medication for the rest of my life, but this is only one tablet a day. Apart from this there is no reason why I won’t live a relatively normal life. I may not have lived a ‘normal’ life by most children’s standards due to being less active during certain periods of my life, but I have no regrets. I am most grateful to my parents and to the doctors, nurses and other staff at the Royal Brompton hospital in London for their fantastic care.

Wrote by Rob Ward for CHD-UK November 2009