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This group was set
up after feedback from young people who found that the support groups
available for ICD recipients, and other cardiac conditions, were simply not
helpful. The Surgery Supporters Network was developed as a support system that increases
effective coping and decreases social isolation for young implant
recipients, whilst also training young people to be able to offer support to
others in a similar situation.
The group meets a number
of
times a year over the period of a weekend, and they are offered:
|
Stephanie Lilly - BHF nurse |
Media training with Trinity PR's Jo Hudson
and Jo Gulliver |
Special Cardiac Nurse Sue Jones |
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CRY Talking Point
CRY Talking
Point is not a place for Bereavement Support.
If you would like to
talk to someone, please call the CRY office. |
| |
 Group
members can be contacted through the CRY office and would be pleased to
help and support any young person undergoing - or who has had - implantation
of ICD, implantable defibrillator, pacemaker or ablation.
Some group members...
Julie Mills
Surrey
"The next
thing I knew was when I came round six days later. There were tubes
everywhere. I was sedated and I had no idea of what had happened to
me. I lost a week of my life."
Louise Campbell
London
“I think the fact that heart
conditions affect young people too needs to be advertised as
much as
possible as even my own friends have trouble believing me!”
 Mike Davies
London
“I am able now to live a normal life. I returned to medical school 8 weeks
later and have just completed my fourth year.”
Dr David Driver South Yorkshire
"I
was first diagnosed with Wolfe Parkinson White in
1998."
Tracey Duncan London
"What was happening to me was that my heart was beating very fast at times,
followed by a very slow beat. The abnormality of the heart rhythm was
obviously a worry - track and field was out of the equation; devastation for
any elite sports person."
Antony Eames Yorkshire
 “I
had a pacemaker fitted when I was 18.
This enabled me to do far more strenuous
exercise than I could do
previously. It is fantastic
to be free to participate in so many
things that for so long I could not even think about trying.”
Bradley
Farrow Surrey
“I
have had an AICD implant because I
have Brugada but it doesn't stop me from doing all the things that
I want to do.”
Scott Fleming
Scotland
"I was transferred to the Royal in Edinburgh
where the ablation
procedure took place. I was then released from hospital on Christmas
Eve after a session on the treadmill."
Rebekah Goddard
Dorset
“My pacemaker is my best friend. It's great for freaking people out and is a good conversation
starter! I wouldn't ever
consider not having it.”
Emma Jackson London
 "When
I was 13 it was discovered I have a heart murmur, after lots of testing I
was diagnosed with Hypertrophic Cardiomyopathy. At 14 I had an internal
cardiac defibrillator fitted as a precautionary measure."
Danii-Marie &
Laura John Southampton
"Now we can do so many
things that we couldn’t do before and fully intend to live life to the
full, but
in the meantime we are very happy to
give one year of our now
hopefully long lives to help others who find themselves facing the long
haul"
Lisa King
Essex
“When I was younger and having surgery
I felt like there was no-one I could talk to about my
heart condition."
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More photos from Surgery Supporters Network
meetings
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CRY Surgery
Supporters Network
