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What is a Heart Hero?

What is a Heart Hero?

It’s me, can’t you see? 

I hide it well, you’d never tell,

I am resilient as can be. 

My NG tube gives me away, 

I don’t know how long this will stay,

I just can’t eat enough of dinner, 

So my tube stops me getting thinner! 

I am a tiny little dot, 

And I have gone through such a lot.

When I was born my Heart failed,

Such rocky waters, I have sailed.

Because of Congenital Heart Disease,

I’ve had five Heart Surgeries.

Three of my heart valves have been replaced, 

My fourth is leaking at quite a pace. 

I have a pacemaker in my tummy, 

without this I’d feel rather funny.

My bones are uneven in my chest,

Huge scars are hidden under my vest. 

Complications? I’ve had lots,

From collapsed lungs to blood clots. 

Infections? I’ve had so many,

Sepsis, Endocarditis, Respiratory. 

I’ve had the Doctors scratching heads,

as I’ve hopped around the hospital beds.

Sometimes I’ve not even been able to walk,

And sometimes I’ve not stopped for breath as I talk!! 

I am only four years old,

I don’t know what the future holds.

Still I fight on everyday,

Smashing obstacles in my way. 

My lifes been hard since it began,

But I find joy in all I can, 

I don’t let small things get me down, 

I love to smile and rarely frown. 

I’m a Heart Hero, can’t you tell?

Maybe not, I hide it well.

Written By Heart Mum Zoe and Author of Three Hearts, one journey

I am the song

Where, where do I belong?
Am I a line, lost from a song?
Who, who will love me now?
Is there a life I must live somehow?
As your tears of comfort trace ev’ry scar I bear,
Ev’ry wound I wear, I am found.
I see where I belong.
I am the words, I am the song.
 
Why, why am I so weak?
Is there a path I must now seek?
When, when we are apart
There is an ache deep within my heart.
As your tears so gently kiss each scar I bear,
Ev’ry wound I wear, I’m known.
I know where I belong.
I am the words, I am the song.
 
Will you shine in my night?
Hold my shield as I fight?
Will you stand by my side?
When I’m afraid, will you be where I hide?
 
Will you dry all my tears?
Take away all my fears?
Will you hold me and say,
‘You are the sun that brightens up my day’?
 
When, when will I be strong?
Am I a dream hidden in a song?
As your tears caress each line of the scars I wear,
Ev’ry wound I bear, I’m alive.
You’re where I belong.
I am the words, I am the song.
 
 
 
Will you shine in my night?
Hold my shield as I fight?
Will you stand by my side?
When I’m afraid, will you be where I hide?
 
Will you dry all my tears?
Take away all my fears?
Will you hold me and say,
‘You are the sun that brightens up my day’?
 
Listen to my heartbeat’s rhythm where our hearts meet.
I am the song.
 
How you shine in my night,
Hold my shield as I fight.
Always there by my side.
When I’m afraid, it’s you where I can hide.
 
Now you dry all my tears,
Take away all my fears.
You just hold me and say,
‘You are the sun that brightens up my day.’
You, you brighten up my day.
 
Andrew Lane March 2020

The Benefits of Exercise for Children with Heart Conditions:

The Benefits of Exercise for Children with Heart Conditions:

In the past, people with congenital heart diseases have generally been advised not to partake in moderate or vigorous physical activity, due to safety concerns of the unnecessary strain it could put on already strained hearts. However, modern research has suggested otherwise, and that exercise for people with congenital heart diseases can actually have numerous benefits, so long as the patients are screened for it – i.e., a doctor has discussed with them and approved the nature of the exercise and its duration. In fact, ‘exercise training’ has a growing number of supporters for its abilities to improve well-being and cardiovascular health, though this is more for those who have been struck with heart diseases later in life.

The best type of exercise for those with congenital heart diseases comes under the branch of ‘aerobic’ activities: these are designed to increase the heart rate and make the participant breathe heavily: these include sports like, running, basketball, football, etc. ‘Valsalva maneuver’, or activities that cause excessive straining by attempting to exhale forcefully through a closed airway (hence the grunting when weightlifting) can increase muscle strength momentarily but can be very harmful: it causes a dramatic rise in blood pressure, which adds strain to the heart and can increase the pressure in the lungs, applying a force to the chest wall. These types of exercises should obviously be avoided.

However, if the exercise is not too strenuous, and has been approved by a doctor, it could benefit children in the following ways:

-Improving fitness

-Lowering stress

-Improving sleep

-Increasing concentration

-Opportunities to socialise and build team skills

-And (potentially) lead to a stronger and healthier heart

 If children are particularly young, and cannot run etc., then suitable activities might include water-based exercise, or things like floor-based play with rolling and the like.

But please consult a doctor first!

 

Scars are beautiful

Let’s talk scars…A scar is a mark left on the skin after a wound or injury has healed.

Scars are a natural part of the healing process. Most will fade although they never completely disappear.

How scars normally form

Scarring is part of the body’s natural healing process after tissue is damaged.

When the skin is wounded, the tissues break, which causes a protein called collagen to be released. Collagen builds up where the tissue is damaged, helping to heal and strengthen the wound.

New collagen continues forming for several months and the blood supply increases, causing the scar to become raised and lumpy.

In time, some collagen breaks down at the site of the wound and the blood supply reduces. The scar gradually becomes smoother and softer.

Although scars are permanent, they can fade over a period of up to 2 years. It’s unlikely they’ll fade any more after this time.

 

Every scar tells a story. Scarring can affect you both physically and psychologically.

BE PROUD OF YOUR SCARS HEART HEROES 

 

 

Lisa and Heart Hero Alfie

4 years ago I fell into a huge hole, my childs diagnosis was devastating and getting through those first 2 years was so so tough. I honestly thought I would never climb out again, I lived in constant fear and I was sure it would never get better. Life got better but the emotional struggle just didn’t seem to get easier. Then covid came along and lockdowns and I just thought now what! Is this it, will this be the final hit for us but a very special charity did research to see what this meant for our single ventricle children and gave us more and more reassurance as time went on. I realised that I had put us all in a type of lockdown long before covid because I was so scared for so many different reasons. Even when we did venture out I would panic and never relaxed properly. 

Today I feel 100% stronger, I do get scared sometimes of course and I will always worry about my children. But I am comfortable with myself, our situation and confident in my very special boy. I have even started to step back a little and let him try new things which would terrify me before and yes he is amazing me all of the time. The diagnosis is scary but what we can do beyond that diagnosis is huge! Life isn’t a diagnosis, it really is what you make of it.