My name is Gem, and I was born with a complex congenital heart condition – Double inlet left Ventricle, Pulmonary Atresia. My initial surgeries were performed at the Brompton hospital in London, my care then transferred to Birmingham, where I am now under Dr Paul Clift.
As a youngster at school, I found it really difficult to go outside, my body did not cope well with the wintry conditions, I had to stay in the school building a lot of the time as I really did struggle. I started taking Warfarin from the age of five. As I struggled with the cold this meant I also missed lots of activities and sports due to them being outside, I also got tired, very easily. Sadly, in my case the school did not support me or my family with my heart condition, basically because no one really understood what it was or what it meant for me, they always tried to make me go outside even though my mum had told them what was wrong with me. Luckily, there is a lot more understanding in schools today.
When I left school, I did a catering course at college for 2 years, which I did find tiring, but also really loved. I did have the odd days off where I could rest and sleep, to restore my energy levels. As part of this course, I also then went to work in a local pub in the kitchen, i did the starters and desserts. I was working there for over 4 years. As much as I loved my job, I found it hard and a bit stressful, but I ploughed on and managed ok. In my late twenty’s I really found it extremely hard to continue with my job, my heart condition meant I was getting palpitations and not feeling well at all, constantly exhausted. My consultant cardiologist Dr Paul Clift advised me to not work anymore as it was more detrimental to my health than I had realised. This has meant I have been unable to work for the past 14 years.
Leaving my job has meant my life has been an emotional rollercoaster, I really do miss my job, I did not want to leave, had the best time, but I know that it was right thing, for my health.
Often i feel isolated, as my job also meant I would socialize. Sadly, I do not have any friends of my own age to go out and have a social life with, or people who understand my journey and what I have been through, this can put me in a low mood and frustrates me. I find it hard to communicate with people, sometimes I am not good enough to be around. When I have bad days, I think I have let everyone down including my family.
My family are amazing!! I have four nieces and two nephews which I take out from time to time, in my lovely car (got a new one this year!) I have amazing support from my Mum, Dad, sister, brother and my sister-in-law.
I became an LHM member 4 years ago now.
LHM is a charity, the work they do for people like me, means everything to me. They have such a lovely friendly team. I am so happy that I became a member, they have helped me so much with my benefits, DWP, which I am on.
I attended my first LHM open day in March 2022, for the first time in my life, I met people who had the same condition as me, I was so happy to meet them, because they get me, my condition and what I’ve been through and am going through. I even dyed my hair purple to match the SVH adult’s logo! And had the LHM SVH adult’s logo painted on my nails. It was amazing to be together and to know they are going through the same as me.
I am happy that I went, had a wonderful time with nice friendly people, who I can contact if I’m having a bad day.
The LHM team have an adult group on messenger, for us all to talk to one another in a private and non-judgmental space. If we have a question or I need to know anything whether cardiac related or not, they are all happy to help, which for me is genuinely nice, and very reassuring. I am happy to be part of it. LHM are doing an excellent job they have organized an adult activity weekend in July for me to go to which I cannot wait to go. I am pleased that they have managed to do this, so that other adults and i with single ventricles can get together again and feel ‘normal.’ There is nothing now I currently need, but I know in the future if I did need anything they will be there for me.
Well, this is my story!
Thanks Gem x