Carol’s Story

Carol with her husband, Ian who was also born with congenital heart defects

Hi there,

I am Carol. I’m 35 years old and I am a childcare practitioner. When I was 15 years old in the August of 1992 I contracted Endocarditis and Septicaemia and was very ill. It all started off when me and my family were in Germany on holiday and I had bad muscle and joint pain in my legs over the days I began to feel tired and sore to the point I could hardly walk and needed help to walk meaning that I couldn’t really do much on holiday as I felt so terrible.

On the way home back to Scotland on the coach I lost my sight and hearing briefly and it was thought perhaps I had contracted a German flu bug or something, I carried on got home and started my first day at College when I started to get a really bad cough and pains in my left arm.

I went to the G.P at this point and he found a heart murmur and my heart was tachycardia (fast) after blood tests were done I went home and was signed off sick from college. Later that night I was admitted to our local general hospital with a serious heart condition many tests were carried out echo, bloods, chest x-rays a few days later I began going dizzy and coughing up blood and vomiting and was admitted as an emergency to Cardiology unit at the Royal Infirmary In Edinburgh. I underwent yet more tests for a few days the usual TOE, x-rays, bloods. As the days went on I got worse to the point I was in a wheelchair and eventually wasn’t allowed out of bed.

I finally got diagnosed with Endocarditis and Septicaemia towards the end of August 1992 where I had to have IV Antibiotics before undergoing emergency OHS to replace my Aortic heart valve as the endocarditis and septicaemia had eaten it away.

On the 29 August 1992 I underwent OHS and it was discovered that I was born with an abnormality in my heart whereby I was born with two cusps instead of three leaving me with a congenital condition called Bicuspid Valve. After seven weeks in hospital and a lot of physiotherapy IV Antibiotics and lung function treatment to improve the strength of my lungs I was finally discharged from hospital whereby it took a long time to come to terms with everything that had happened to me, I struggled with flashbacks, panic attacks and nightmares for years. I lost a lot of confidence in my abilities and was scared for my future.

I am now nearly 36 years of age and during the years of 1992 and 2013 I have had many TIAS(Mini strokes} and also a heart attack I have been diagnosed with asthma, and hypothyroidism and take lifelong thyroxin, warfarin and other drugs. I am unable to work full time as i tire easily and am prone to anaemia which in turn makes it hard to function. Exercise is sometimes hard work but isn’t it the same for everyone and walking up hills and stairs can cause my heart to beat harder and faster making me very breathless and tired. As with all CHD patients we have been through a lot physically emotionally and psychologically but due to our ailments we have made many friends that understand our plight which is very important as having a disability or long term health problem that isn’t seen from the outside is difficult to live with as the general public and employers and sometimes doctors don’t always understand our difficulties or believe us as we often look well on the outside.

I wouldn’t change my heart condition for the world, although I can only work part-time and struggle with stress and fatigue and seem to be prone to infection I am very lucky that I am still able to lead a fairly normal life. I met my now husband at the 1996 Scottish conference where I attended for support as I was going through depression/anxiety issues at the age of 19, seven years later we were married and this year we will have been married for 10 years my husband also has CHD and is also fairly healthy at the moment we both require surgeries still to come and I know we will get through it as we get through everything.

I have done various amounts of charity work since finding out about my heart condition for heart charities as well as others which i have enjoyed and have met great folk along the way where i have learnt various things from, it is so important to work for charities as you never know yourself when you might need one.

I am very grateful and very lucky. Always remember when you are feeling down that there are a multitude of people that understand and that are there to help and support anyway they can it can be hard living with CHD in society as our conditions most of the time are unseen on the outside to other people and it is the human behaviour that people will judge and that is wrong but it’s not our problem it’s their problem. Never be ashamed to ask for help as you will always find someone who feels exactly the same way you do.

Sunshine always follows the rain.

Wrote by Carol Reid

Carol Reid kindly gave CHD-UK permission to use the photographs on this page.