Hello all
Not a great deal has happened since I last posted, but I have had a letter from the hospital that has confused me about the timing of my operation (it's almost like this letter should have been sent at the end of July, straight after my last appointment with my consultant and before it was decided to move the op forward a year).
Because I live in Kent currently but my letters are still sent to my parents address, my Mum rang the hospital straight away and my appointment with the surgeon in January still stands, to talk about me having the surgery in the coming Summer.
There are pros and cons to having the surgery both next Summer and the one after but every time there is confusion I get all worked up and upset.
If I have the surgery in the coming Summer (2013) it will be done sooner, there are less risks to my health and less chance of my heart enlarging more BUT, I'm worried I won't have recovered before going back to Uni at the beginning of October, and that's really important as it will the the start of my final year. I'm worried that I would have to wait a year and then finish my course the following year, which is something I really don't want to do. I want to graduate with my friends and enjoy living with my friends in final year as currently planned. I also want to start my life after Uni with my long term boyfriend Aidan as we are already starting to plan, when we both graduate in July 2014.
If I wait until the following Summer (2014) I will have finished my course and will have 10 or so weeks during recovery to be looking into my career and finding a job after I have finished everything at Uni with less pressure to have a job lined up straight after I leave Uni. On the other hand I will be worrying about upcoming surgery that will happen just weeks after my final exams, whilst I'm trying to do said exams and it may have an impact on finding a job as I will be recovering. There is also a chance that I will start having negative effects on my life and health should I wait the extra year for the surgery.
When I first found out that I would be having surgery I didn't think that the emotional strain on me would start so many months before I'm having the surgery. I'm finding it hard but I know that eventually the right decision will be made and I trust the doctors who suggest that the surgery should be done sooner rather than later.
Just to say, if you would like to follow my journey more frequently, I am going to set up the twitter account @CHDheartwarrior to share my feelings about my journey and any interesting things I find out about CHD along the way.
Stay strong Warriors xxx
Sunday, 2 December 2012
Friday, 16 November 2012
Day 1: Starting this for CHD Young Adults with Precious Hearts
Day 1:
Hi,
I'm Beth, I'm a 20 year old student studying Countryside Management with a view to working with children in Environmental Education as a career. To the majority of people I appear to be a normal 20 year old student. I love music, horses and watching rugby. I ride regularly, I sing and I belong to a battle re-enactment society. I have a wonderful family, boyfriend and friends and love my life in my home town of Burton on Trent, my Uni life in Newport, Shropshire and I'm having an amazing time on placement for my course down in Tenterden, Kent.
As I said, people wouldn't think there was anything different about me, but actually, I'm 1 in 100 of people, born with Congenital Heart Disease. At 10 days old I was diagnosed with Fallots Tetralogy which I will explain in another post in time. It meant that overnight at 10 days old I was on life support and had my first surgery at 11 days old. I had a shunt put in to keep my blocked Artery open.
At 14 months I then had open heart surgery to repair the hole in my heart. Since then the only impact that this has had on my life is hospital appointments about once a year for as long as I can remember.
Now, aged 20 it's all going to change. I am due to have another operation, which will be open heart, next Summer. In complete honesty I am terrified as all my other surgery was way before I could remember and hasn't had any affect on me. Ok so I can't run as much, but I never really liked it! Apart from that I had a normal childhood just with visits to the most amazing staff at Glenfield Hospital.
I aim to write this blog to show my journey through the run up, surgery and recovery period. To support those Congenital Heart Disease patients who don't have any recollection of their condition as a baby and have led a normal life until they have to go through surgery as a young adult. It's not going to be an easy journey but I know that the staff at Glenfield will look after my precious heart just as they do for all the other children and adults with precious hearts.
Please follow my journey over the next year, as I aim to show how everything is for young adults who suddenly have their condition brought back to the forefront of their lives. I hope that even if just one other CHD young adult with a precious heart follows this they know that they are not alone.
Beth xxx
P.S
Dear Glenfield, you are some amazing people and whatever happens with the review of Childen's Heart Surgery so many people owe so much to you for looking after our precious heart
Hi,
I'm Beth, I'm a 20 year old student studying Countryside Management with a view to working with children in Environmental Education as a career. To the majority of people I appear to be a normal 20 year old student. I love music, horses and watching rugby. I ride regularly, I sing and I belong to a battle re-enactment society. I have a wonderful family, boyfriend and friends and love my life in my home town of Burton on Trent, my Uni life in Newport, Shropshire and I'm having an amazing time on placement for my course down in Tenterden, Kent.
As I said, people wouldn't think there was anything different about me, but actually, I'm 1 in 100 of people, born with Congenital Heart Disease. At 10 days old I was diagnosed with Fallots Tetralogy which I will explain in another post in time. It meant that overnight at 10 days old I was on life support and had my first surgery at 11 days old. I had a shunt put in to keep my blocked Artery open.
At 14 months I then had open heart surgery to repair the hole in my heart. Since then the only impact that this has had on my life is hospital appointments about once a year for as long as I can remember.
Now, aged 20 it's all going to change. I am due to have another operation, which will be open heart, next Summer. In complete honesty I am terrified as all my other surgery was way before I could remember and hasn't had any affect on me. Ok so I can't run as much, but I never really liked it! Apart from that I had a normal childhood just with visits to the most amazing staff at Glenfield Hospital.
I aim to write this blog to show my journey through the run up, surgery and recovery period. To support those Congenital Heart Disease patients who don't have any recollection of their condition as a baby and have led a normal life until they have to go through surgery as a young adult. It's not going to be an easy journey but I know that the staff at Glenfield will look after my precious heart just as they do for all the other children and adults with precious hearts.
Please follow my journey over the next year, as I aim to show how everything is for young adults who suddenly have their condition brought back to the forefront of their lives. I hope that even if just one other CHD young adult with a precious heart follows this they know that they are not alone.
Beth xxx
P.S
Dear Glenfield, you are some amazing people and whatever happens with the review of Childen's Heart Surgery so many people owe so much to you for looking after our precious heart
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