This is one of the congenital heart conditions ( I refuse to use the word defect as it is derogatory and I do not see myself as defected) I have and the one, that although surgically repaired, requires annual follow-ups at the Royal Brompton Hospital the best cardiac service in the UK (imho). Not only are the brilliant but they are also so nice.
I’m not going to bore you with all the medical details of the condition(s), just to say that it is a narrowing in the major artery which takes oxygenated blood from the heart to the brain and limbs, but if your interested the link up the top is a good start.
I will however, bore you with the personal details. When I was born I appeared healthy, and everything was fine for the first few days, then my Mum (who was still in hospital at this stage, this was the norm back then) began to worry as I wasn’t feeding as well as previously, and over a couple more days I began to stop crying and was just sleeping (more than usual babies) and seemed lethargic. She sensed that something was wrong but was assured by the medics and nurses that I was fine and she was just being an over anxious first-time mother. As much as they were wrong, my Mum is a total worry wart so this was a reasonable assumption. At 10 days old I was lying in my mums arms, went blue then went very limp. I was in cardiac failure – then fun then began! I was rushed via ambulance (with sirens and lights) to the Westminster Hospital (which sadly no longer exists but became the Chelsea & Westminster Hospital) where I was diagnosed with patent ductus arteriosus (pda). They operated immediately and found that I also had a CoA). The pda was resolved and not a problem but the CoA would have to be surgically repaired but not for a few years. I had this done at 41/2 in the summer before I started school, I have vague memories of it but most surround all the Sindy dolls and toys I received after the operation. I have had no major issues with this since, a few years back they did a cardiac catheter and found that the aorta had started to re-narrow and was causing me to have high blood pressure but that has been resolved with meds for a while now. I still have to go have check up every year, an MRI every couple of years and 24 hours blood pressure tests every two years.
I do get a bit stressed just before each appointment (the next is in about 3 weeks) as there is always the possibility that they will turn round and say they need to operate. At this time there is no other type of intervention apart from cutting out the narrow part (as they did before) and sewing the artery back together again. A few years ago (Jan 2003) they tried to insert a stent to hold the narrowing open, but it wasn’t successful as I had the ‘wrong type of narrowing’ – go figure! (I wasn’t aware there was a wrong and right type). They decided that as i wasn;t having any issues to just leave it and treat the increased blood pressure with (more) meds. I’m actually on 2 blood pressure meds and the combination appears to be working fine. Touch wood!
This is just the condensed version, but although it may appear traumatic I actually feel blessed as every time i go to the Brompton I see people (both older and younger) who are in a much worse way than I am, and who haven’t/can’t lead a normal life. I have issues with my ME but as far as my heart is concerned all seems fine. I had a normal childhood and teenage years, was able to go out with friends, go clubbing when I was old enough and was often the last person dancing whilst others were beat! I understand that things may change in the future but to be honest isn’t that the same for everyone – no-one knows what is in store for them, so I try to live for today, whilst trying to look after my body the best I can, hoping to have a long and happy relationship with it in the future.