Download Scarred FOR Life Stories from others with scars from CHD surgery

Scarred FOR Life
Stories from others with scars from CHD surgery
Lee Carroll
Female
31 years old
White, Scottish
Heart murmur and aortic stenosis
Scar from neck to chest; 3 smaller scars below from drains
Hi, my name’s Lee Carroll. I'm a young 31 year old woman. I'm Scottish with two lovely girls
and have a great big scar running from just below my neck to below my chest. I also have
three smaller scars below this where drains were. I have had open-heart surgery twice, most
recently last year and was born with a heart murmur and aortic stenosis. My scar is mostly
hidden from view and I'm still a bit worried about showing it but it means that I'm alive and
here for my girls so I know I should be proud of it!
Cassandra Crossley
Female
25 years old
White, Scottish
Hole in heart, narrowing of arteries
Scar below neck to stomach with drain scars
I am so proud of my scar now, which I used to hide with high t-shirts and necklaces! I was
born with a hole in my heart which then caused a narrowing in one of my arteries. I had
open-heart surgery at the age of 16 which was a success. I still receive routine check-ups at
my local hospital. My scar is on my chest from below my neck and reaches nearly to my
stomach along with chest drain scars.
Louise Campbell
Female
39 years old
White, Scottish
Arrhythmogenic right ventricular cardiomyopathy (ARVC).
Scar below left collarbone from ICD implant aged 18
I have a scar below my left collarbone from an ICD implant when I was 18. At the age of 15 I
had a cardiac arrest and was diagnosed with familial dilated cardiomyopathy. This was later
amended to ARVC.
I’m not proud of my scar but I don't hide it and I'm not ashamed of it. I hate if people
mistake it for a Hickman line (a central venous catheter most often used for the
administration of chemotherapy or other medications) and feel I have to make sure people
don't think I've had cancer and been 'ill' (though why I don't view my heart disease as a
proper illness is anyone's guess!). It’s not a Hickman line, it's not a burn, it's not where I've
been stabbed! (all real questions I've had!) and it doesn't define me. It's just a punctuation
mark in the story of my life!
Scarred FOR Life
Stories from others with scars from CHD surgery
Michelle Houston
Female
26 years old
Atrial Septal Defect, Partial Anomalous Venous Connection
Sternum scar approx 9-10 inches in length
Without my scar, I wouldn’t be writing this. It’s not always easy to look at; it’s larger than it’s
supposed to be, it’s not pretty and I sometimes feel like I want to hide it. Sometimes it
seems to have it’s own mood and most of the time it seems quite angry, but it’s a mark of
bravery, a war wound that I wear every day. It reminds me how precious life is, how
important it is to love and cherish every person, and every new day. I hope to inspire others,
to encourage them, and remind them that although sometimes we have to live everyday
with reminders of days best forgotten, there are better time ahead!
Anonymous
Female
58 years old
White, Caucasian
Corrected defect ‘hole in the heart” and pulmonary stenosis
Sternum vertical incision, starting 2 inches below collarbone, approx. 10 inches long
In my teens and early adult life I tended to cover up my scar and delay or avoid any lengthy
explanation on my surgery. I have never been offered plastic surgery to hide the cut which
begins just 2 inches from my collar bone. This vertical incision procedure was modified in the
1970s onwards to avoid cutting the sternum. I have no lasting effects from my condition.
The corrective surgery was a success and was performed, I later learned, by a surgeon
whose hobby is marquetry. This may explain his deft work. Back in the 1960s when I had my
operation, heart surgery on children was in its infancy. Of the three children in my ward, one
died on the ward and one died seven months later from rheumatic fever. I was one of the
few survivors and certainly one with few residual problems. Today I have a mild mitral valve
murmur and a little thickening in the muscle of the heart where all those years ago, the
heart bypass machine was intubated. I am generally fit and healthy now and have been a
Senior Lecturer in a University for many years. I have two healthy teenaged children too.
Vicki Hendry
Female
48 years old
White, Scottish
CCTGA, pulmonary stenosis
Old midline scar, pacemaker scar left clavicle
It’s 40 years since my first surgery, which saved my life, enabling me to have my three
children – the best things in my life. Three weeks before Christmas 2008, I became unwell
and was admitted to hospital. It was the first time my children had seen me in hospital, they
were 17, 15 and 11 years old. I wasn’t prepared for Christmas and we all missed out on the
family Christmas rituals. On Christmas Eve I was discharged with my first pacemaker. I hadn’t
wanted a pacemaker and felt this was the beginning of a downward spiral. Shortly
afterwards I read an essay my daughter had written describing coming to visit me in
hospital, in a ward full of old ladies. She said she was worried as she didn’t feel old enough
to be mum to her little brothers. My pacemaker scars remind me of the 81 Wainwright
Walks in the Lake District I’ve completed since I got my pacemaker, the miles I’ve cycled and
Scarred FOR Life
Stories from others with scars from CHD surgery
the plans I have for walks and cycles next year. They remind me that my darling girl didn’t
have to be mum to her brothers, they remind me I’ve seen my children grow. My scars
remind me to live.
Lynn Mathewson
Female
38 years
British
Tetralogy of Fallot & Pulmonary Valve replacement
Scar down front of chest and under right breast to my back
Having my scars means a lot to me and I don’t feel at all embarrassed by them or showing
them off! I was born with Tetralogy of Fallot which basically means I have four things wrong
with my heart. I have had three open-heart operations. I had one operation at four months
old which was a temporary repair, another at four years old which was a full repair and then
my last one when I was 34 years old which was a pulmonary valve replacement. I'm a single
mum and have two children who are 11 and 6 years old. They know all about my scars and I
tell them that they are my war wounds and without them I wouldn't be here and neither
would they! With having three open-heart surgeries my scar down my chest is very
noticeable and quite raised but I wouldn't try to hide it in any way. Also both my breasts are
very noticeably different in size due to having a scar running under my right breast due to
having a Blalock-Taussig shunt implanted. I wouldn't be without my scars as it shows what I
have been through as a baby, a toddler and adult and the person I am today.
Anonymous
Female
44 years old
Scottish
Congenital Heart Disease
Two scars down the middle
I have never remembered myself without my "war wound" as I now affectionately refer to it
as. Since undergoing open-heart surgery in London at the age of six I have always hidden my
scar from view. When I have "dared-to-bare" it always brings unwanted questions from
curious friends and makes me feel different from my peers.
Thirty-eight years on and another unsightly scar later, after surgery to replace a valve, I am
trying very hard to embrace it. I realise it is something I should be proud of, as I am often
told, but it is easier said than done and old habits are hard to change. In the meantime I
continue to wear the high neck tops! Perhaps one day!
Rowena Harvey
Female
36 years old
Patent Ductus Arteriosus (PDA)
Scar runs from left side round and up my back. I also have a scar on my lower back where a
chest drain was located
My scar is simply part of me. It wasn’t until it was pointed out recently that I thought of
myself as having CHD. I had corrective surgery when I was four years old. I have no real
memories of this experience except for a vague picture of a hospital ward, egg sandwiches
Scarred FOR Life
Stories from others with scars from CHD surgery
and apricot flavoured medicine. Maybe that's why I don't like either now.
I don't see my scar often unless I look in the mirror. I like my scar like any other part of my
body. I have never felt any shame or embarrassment about it. It means that I was able to
have a healthy childhood and now have no lasting health concerns.
Born with PDA today I may not have such a large scar. Advances in medical treatment mean
that the procedure can be done with keyhole surgery. It’s only recently since having my own
child that I have reflected on the undertaking my surgery was for me and my family. I feel
lucky that my treatment was straight forward. I carry my scar happily as a positive
representation of the success of my treatment.
Louise Sharp
Female
Scottish
45 years old
Hole in the heart and Transposition of the Great Arteries (TGA)
Several scars, the main one under breasts and round to past shoulder blades
I was born in Hawick in 1970 with a hole in the heart and TGA. I was operated on at 21
months old in Great Ormond Street Hospital and have several scars. The main one goes
under my breasts and right round to just past my shoulder blades. I also have a scar on my
stomach on the right side where a drain has been. I have been cut and stitched on my right
groin, on the top inner thighs of both legs, under my right armpit and on my right inner arm.
I have never tried to hide my scars. I am proud of them they saved my life. I am now 44
years old, married and have a healthy 15 year old daughter.
Mark Gallagher
Male
White, Scottish
39 years old
Ventricular Septal Defects (VSDs). Currently leaking aortic valve.
Long scar down sternum
I was born with two VSDs. At the age of 14 years old I had surgery to repair my hole in the
heart. In March 2012 I had the David Procedure (valve sparing aortic root replacement). I
have a long scar down my sternum from open-heart surgeries and two small scars below this
from tubes.
My scar means I am a contradiction. My scar means I am strong and weak, brave and scared,
happy and sad. My scar means I am all of these things, all at the same time.
My scar reminds me of the agony of open-heart surgery. How strong I was to face it, go
through it and come out the other side. My scar reminds me of how physically weak I was.
More than that though, I see how strong I have become since then, both physically and
mentally.
Some say I am brave to face such an event. I don’t know if I believe that to be true. In a way,
I didn’t have a choice. I wasn’t scared of dying. I was scared of dying so young. I had to be
brave.
Scarred FOR Life
Stories from others with scars from CHD surgery
I am happy that I am here today. Happy to be living life to the full. I have more surgery to
face. It never ends. This makes me sad. I wish I could be fixed once and for all. I wish I could
be normal. But I’m not normal. I am unique. I am happy to be unique.
I am proud of my scar. No contradiction.
Kenneth Hamill
Male
31 years old
Partial Atrial Septal Defect (ASD)
I have a five-inch scar vertically down the centre of my chest and two inch long horizontal
scars just below that.
Two weeks after my father died of cardiac arrest my eldest sister collapsed with Takotsubo
Cardiomyopathy and arrhythmia. My family and I then had tests on our hearts and this is
when the ASD was discovered. It was later discovered that two of my sisters and I have the
genetic condition Catecholaminergic Polymorphic Ventricular Tachycardia. Following surgery
my wound became infected and took longer to heal causing a larger scar. I became used to
the doctors and nurses looking at my scar but I was self-conscious about it generally. My
family and friends were interested in it and slowly I started to show them. Part of me just
wanted to get it out of the way but it also made me care less about it as people didn’t look
at me with pity or disgust. They asked questions and seemed to accept it as a part of me
that will not change. Although it doesn’t bother others I would still like to get rid of it.
David Evans
Male
35 years old
Transposition of the Great Arteries (TGA)
Vertical scar on chest and horizontal scar around torso
Born in 1979, doctors diagnosed TGA and I spent six weeks in hospital receiving three
operations to prolong my life until I was old enough to have the Mustards corrective
procedure. This happened when I was eight months old at Edinburgh's Hospital for Sick
Children. It's not just my vertical scar down my chest or the horizontal scar round my torso
that indicates this operation; I struggled so much afterwards that the doctors had to suture
in my drips! Hence further small scars on my chest and wrist. I guess I just wanted to get
better. I don't think about my scars much until I go swimming or on holiday and I catch
people glancing at them. They are a physical reminder of my past and potentially of my
future. But they are also a testament to how humankind has improved the treatment of
these rare conditions.
I now have a pacemaker implanted. This has since been replaced, the results of which are
clearly visible below my left collar bone. This scar tells the world simply that I don't like
magnets much!
I'm both proud and pleased to say I am married, I am a father and I also work full time. I
enjoy reading, travelling and not being ill!