Tag Archives: Congenital Heart Disease

Heart Health

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For my 30th Birthday I decided I wanted to raise awareness of Congenital Heart Disease. To do this I wrote about Heart Health on this blog and about my fundraising challenge. See Pips Turning 30. 

February is National Heart Month, lets talk about Heart Disease. I was born with Congenital Heart Disease, I had two holes in my heart and interrupted aortic arch. This was corrected at one week old. 

Here in the UK 13 babies a day are diagnosed with a heart defect.

The BHF has some staggering statistics:

‘Heart and circulatory diseases cause a quarter of all deaths in the UK, that’s more than 160,000 deaths each year – an average of 460 deaths each day or one every three minutes in the UK.

  • There are around 7.6 million people living with a heart or circulatory disease in the UK: 4 million men and 3.6 million women.
  • Coronary heart disease (CHD; also known as ischaemic heart disease) is the most common type of heart disease. It is the most common cause of heart attack and was the single biggest killer of both and men and women worldwide in 2019.
  • In the UK there are as many as 100,000 hospital admissions each year due to heart attacks: that’s one every five minutes.
  • Around 1.4 million people alive in the UK today have survived a heart attack.
  • More than 900,000 people in the UK are living with heart failure.
  • Strokes cause around 34,000 deaths in the UK each year and are the biggest cause of severe disability in the UK.
  • People with a family history of coronary heart disease are much more likely to develop vascular dementia.
  • Each day 13 babies are diagnosed with a congenital heart defect in the UK.
  • There are more than 30,000 out-of-hospital cardiac arrests in the UK each year, with a survival rate of less than 1 in 10.
  • More than 4.9 million people in the UK have diabetes – many thousands of them are undiagnosed.’

    British Heart Foundation (2023)

    These numbers show exactly why we need to ensure we invest in our heart health. Every single one of us.
A red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.
A heart stitched back together.

Being born with Congenital Heart Disease means I will be on tablets for Hight Blood Pressure for the rest of my life. No lifestyle changes can stop this. I have Congenital Kidney Disease so I need to ensure my Kidneys keep working, otherwise this will have an impact on my heart. This is one of the reasons I am on tablets.

Congenital Heart Disease also means I have to attend hospital appointments to ensure my heart stays healthy and that I am doing everything I can to look after my heart.

We need to take heart health seriously, it affects more people every year. Taking far too many lives. You can do your part to help make change by learning CPR. Find a course near you.

By learning CPR you are buying someone time. You are keeping person alive when they have a Cardiac Arrest.

Most importantly phone the Emergency Services. Then someone can come and help you.

If you would like to learn more about the BHF please follow them on Twitter and give your support. Heart disease is cruel, but hopefully, one day, we can live in a world where it does not exist. 

*I am not writing on behalf of the BHF* These are just my own thoughts surrounding Heart Disease as someone who was born with CHD.

CPR and Defibrillators

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Hello again,

This blog will focus on the importance of CPR and Defibrillators. Before I dive into this I would like to ask if you know the difference between a Heart Attack and a Cardiac Arrest?

‘5 differences between a heart attack and a cardiac arrest:

1. A heart attack is not the same as a cardiac arrest.

2. A heart attack is when one of the coronary arteries becomes blocked. The heart muscle is robbed of its vital blood supply and, if left untreated, will begin to die because it is not getting enough oxygen.

3. A cardiac arrest is when a person’s heart stops pumping blood around their body and they stop breathing normally.

4. Many cardiac arrests in adults happen because of a heart attack. This is because a person who is having a heart attack may develop a dangerous heart rhythm, which can cause a cardiac arrest.

5. A heart attack and a cardiac arrest are both emergency situations. Call 999 straight away.’

The above information is taken from The British Heart Foundations Website.

I remember in secondary school in a PE lesson we learnt CPR. It was a very strange lesson. Knowing that what you were learning could be used to safe a persons life was very strange. I do not remember getting a certificate for it. But I do remember being taught the basics and what to do in the event someone collapses.

Learning CPR is a vital skill you could save life. Here are some facts from the BHF (Click on BHF Statistics Factsheets-UK):

• There are more than 30,000 out-of-hospital cardiac arrests (OHCAs) in the UK each year.

• The overall survival rate in the UK is just 1 in 10.

• Every minute without cardiopulmonary resuscitation (CPR) and defibrillation reduces the chance of survival by up to 10 per cent.

• Performing CPR can more than double the chances of survival in some cases (ventricular fibrillation).

• It’s estimated that public-access defibrillators (PADs) are used in less than five per cent of OHCAs.

• The Chain of Survival (below) is a sequence of steps that together maximise the chance of survival following cardiac arrest

These numbers are very scary. I hope that one day we can live in a world without Heart Disease and all the other areas the BHF is working so hard to fight against.

If you want to do your bit to help ensure more people survive out of hospital Cardiac Arrests please learn CPR. You can find out how to do CPR here.

St Johns Ambulance has a course which is Certified for learning CPR. Click here.

When you are out and about keep a look out for any Defibrillators you might see. Take a picture of it and post it on social media. In doing so you are helping to raise awareness of their locations and ensuring other people know where they are. Also check out the National Database for your nearest Defibrillator. (Caution that this may not contain all defibrillators and it may not be accurate as to whether they are in service.)

Always dial 999 if you suspect someone needs an ambulance.

When it comes to CPR it is better for you to try and do something, call for an ambulance immediately. If you can do CPR, try. No one is going to say anything if you do it wrong. Very second that passes counts.

While you are doing CPR you are doing the work of someones heart for them. You are working to keep that person alive. That to me is pretty mind blowing.

Please consider all I have said. If you can also help by donating even £3 to my fundraising to The BHF and The Children’s Heart Surgery Fund, you will be helping to make a difference. Donate here.

Thank you for reading.

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip

April Update

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Hello again, 

How are you?

I am dropping in to tell you about the last few weeks. 

It’s been quite difficult in some ways as I had a piece in the news paper about my fundraising. Talking about being born with Congenital Heart Disease is very difficult. It was hard to articulate my emotions around it and my feelings now I am going to be turning 30. Having my story shared in the paper was a good thing overall as it hopefully has allowed me to make other people feel less alone. 

One thing I have aimed to do with this fundraising is to share my story as it may help others feel less alone. When you are going through something as horrible as my family did, you are feeling alone. You don’t know what do. So by me sharing my story I hope to also make other people feel like there can be hope. Hope that their child can have a future. 

As well as raising the £3000 for the British Heart Foundation and the Children’s Heart Surgery Fund, I also want to encourage people to think about the long term impacts of Heart Disease. For myself it was just the beginning. If you have read any of my other blogs you will know I am also Visually Impaired. This has a massive impact on my life. Heart Disease is not just about your heart, it is everything else which goes with it. 

But this blog is not a woe is me, it’s a look what I am doing with the problems I have. I am aiming to raise awareness in the hope that others know that they are not on their own. That no matter what happens I hope they can find the support they need to live their lives as much as possible. I know I am very lucky. Even with all my other health problems. It’s about what you make of what you’ve got. 

Please do not assume that I am happy all the time, everyone has days where they feel down. Emotions are a part of life. If you need help I hope you can find someone to help. That help can even be in the form of just reading this blog to know you are not alone and someone out there understands a bit of how you’re feeling.

I have found it so moving hearing from people who they have in their lives who has a heart condition. It makes me feel connected to them in some way. It makes me really want to keep pushing on and raise this money. 

Me on the front page of the Yorkshire Evening Post. Headline 'I will be forever greatful'
Yorkshire Evening Post

In the past few days my fundraising has reached £1347!!! I have to reach £3k. That will be £1500 for each charity. If you can donate please follow this link. If you can share my page please do. Thank you so much for your kind donations in helping me to raise this money. It really means a lot to me.

Thank you for reading my blog.

If you want to follow me on instagram it’s @VisuallyImpairedPip

or my fundraising Twitter @PhilippaB 

Charity Challenge Impact

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Hello all, 

I hope you’re doing well. 

For this post I thought I’d spend some time talking about the charity challenge I have been doing for The British Heart Foundation and The Children’s Heart Surgery Fund. 

Before I start I will just give you a bit of info about this challenge. I was born with Congenital Heart Disease and I had open heart surgery at a week old. My surgery was done by one of the founders of The Children’s Heart Surgery Fund, which is why they are one of the charities I aim to raise money for. Since the 21st of August 2020, until the 21st of August 2021, I aim to try and raise £3000. Due to the Coronavirus situation I am unable to go out and do bucket collections to aid my total. So I’m solely relying on my social media to try get the word out there.

Check out What’s Virtually Happening 

Heres a piece about me in the Bradford T&A

In order to raise the money I aim to complete 660 miles in total, by counting daily steps and doing cycling on the bike in the garage. Maybe more I haven’t got that far yet. 

What impact is all of this having? 

Doing this challenge is difficult for me for various reasons. The first is I have a severely curved spine. You may have heard of Scoliosis. Basically my spine is curved into an S shape, my spine is so curved that it almost touches my shoulder blade. It is very painful. I have to take breaks at work to sit down and I take painkillers everyday. I do stretches given to me by my physio, I also have sports massages once a month to release any tension which has built up over time.

My physio says the cycling is good for my back, providing I do not over do it. That I sit properly and maintain good  posture. Which I aim to do. Also because I am using the bike in the garage it is safer. When you’re Visually Impaired like I am it can be tricky finding something which can help to keep you fit, but you can also do independently. 

The other thing which is great about cycling is that as we have had to stay at home a bit more due to Coronavirus I found myself snuggling with my circulation. One of the issues I have is Circulatory Disease. I often get cold, my fingers and toes got numb and white, or purple. During the first lockdown period I found my toes going purple more often and my skin went all flakey. So I started to try move about a bit more. But there’s only so many times you can wander about the house. 

We ended up phoning the Doctors, they were really helpful and sorted me out by putting me back on some tablets I’d not been on in a while and giving me some cream for my toes to help the swelling go down and reduce the itching. It was rather painful. 

Later in the summer I decided to start cycling. It has really helped with my circulation. Although I am still on the tablets. Before you say anything, no amount of life-style changes will enable me to come of my tablets. My toes still go purple and my fingers still go white. But the cycling helps me circulation quite a lot. 

Besides this challenge helping me with my back, although I do have to be careful because it doesn’t stop the pain, it really helps with my core strength and it has the additional benefits of helping my circulation.

I am finding this challenge to be hard, right now I am sat in my for chair with my MacBook resting on a pillow so it is a bit higher up so I don’t have to bend my neck. If the benefits are better core strength and better circulation, then I have to just not push myself too far with the cycling. I am counting my daily steps on the days I am not cycling, so I do have to take it easy at times. 

Right now for example, my whole right hand side aches. But I am sat down, I am wearing layers to stay warm and I am not doing any cycling today. 

If you can please support me in my challenge to raise £3000 then please follow the link to my Virgin Giving page. 

I am not asking for a lot. I just want to raise awareness of a few things: 

My chosen charities and the incredible work they do. 

The impact of this challenge on my day to day life. 

The challenges I face after being born with Congenital Heart Disease. 

I am not one to sit and moan. I have a job and I do what I can to help manage the difficulties I live with. All I want is to help people see that if their child is born with Congenital Heart Disease, that there can be hope. The lovely people at the Children’s Heart Surgery Fund are there from the moment the family is given the news their little one needs open heart surgery. They ensure they have a hand to hold while it feels as though their world crumbling around them. 

The British Heart Foundation are helping to find a way in which we can make the lives of those with Heart Conditions, Vascular Dementia and Circulatory Disease feel like there is a future. Because there is. 

Hand drawn image of UK. BHF Lahore & different names on map to show my virtual route.
Where are we going?

The pandemic has had such an impact on our NHS and Charity sector. It has impacted areas you would never have thought about. Researchers who have had to put their lab work on hold, but yet their time frames to complete their research have remained the same. It is crazy. 

Heart Disease is Heartless, it doe not care about Covid, or what you were planning to do with your next holiday. If it is going to happen, it will happen. Which is why if you take a look on the BHF website you can find a whole host of things which can help you live a healthier lifestyle. Living healthier can have a major impact on your heart. Seems like an obvious thing to say. But it is true. 

Which is why I am trying to do a bit more cycling to help with my circulation and my back. If you can support me that would wonderful. Donate to my cause and lets Beat Heart Break Forever. 

Thank you. 

Fundraising

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Hello, 

Some of you maybe aware that I am currently in the process of fund-raising for two amazing charities; The British Heart Foundation and The Children’s Heart Surgery Fund. I wanted to give you all an update on whats going on so far. 

I have been counting my daily steps and cycling on the exercise bike in the garage to build up my miles. First of all I did the distance from Bradford to Newcastle, we’re now doing Newcastle to Liverpool. From there we are going to do the distance to Bristol and from Bristol we are doing the distance down to Lands End. In total I am doing 660 miles. I aim to have this done by March 20th!!

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1 

A red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.

A heart stitched back together.

Some of you are probably thinking this post is a little different to my usual blog post about Disability and you are right, it is different. 

However, what I need to tell you all is that I was born with Congenital Heart Disease. Who knows, this might have been the cause of all my Disabilities. We will never know.

One of the reasons why this challenge is hard for me is my curved spine. I have Scoliosis. The top half of my spine curves outwards and almost touches my shoulder blade. It leaves me in pain and means I have to take tablets on a daily basis. Once a month I go for a sport massage to help my back muscles as they get quite tight and very uncomfortable. 

This challenge is something I am doing for my 30th Birthday. I want to give back to these charities. The Children’s Heart Surgery Fund was partly founded by one of the Surgeons who is responsible for saving my life. I want to raise awareness for this fabulous charity based in the Leeds General Infirmary. They offer support to families and their children as they go through the journey from diagnosis of a heart condition right the way through all of their follow up appointments. They are there to support staff to support their patients to make their stay in hospital as good as it can be. They provide a place to stay for parents who’s child is poorly. They offer emotional support. This charity is truly wonderful and does so much to help the patients at the LGI. 

I am supporting The British Heart Foundation because they are working to Beat Heartbreak Forever. They are funding research into areas such as Circulatory Disease and Vascular Dementia. Their 750 stores go along way to help sell your old items and maybe they could be where you pick up your next outfit? 

If you want to see Heart and Circulatory Disease in Context then click here. These numbers will show you why I am doing my bit to help raise money for the British Heart Foundation. 

I will be posting more about my fundraising as we go into the next few months. It might not be disability related directly, but as I mentioned previously my Disabilities could have been caused by my Congenital heart Disease. 

If you can spare £5 thats £2.50 to each charity you will be doing something wonderful. Thank you very much. 

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1