Heart Disease and Mental Health

Hello all, 

I hope you’re all well.

A while ago I had a chat with the Lead Nurse for the Yorkshire and Humber Congenital Heart Network. We had a great conversation about the staff and their jobs and how they support people living in our region who are living with Congenital Heart Disease. We also discussed what I have been doing with my fundraising. 

So for this blog I thought I would write about the impact of Mental Health when you are living with Congenital Heart Disease. 

Mental Health is important, but I often wonder how much emphasis is put on it for those of us living with the Congenital Heart Disease, or those of us who are living with Heart Disease. 

One thing which may not be aware of is that the congenital heart service has a dedicated counselling service for those who are under the care of the Heart Unit in Leeds. This is pretty amazing. Let me give you a bit of an understanding as to why mental health is so important to people like myself. 

Living with a heart condition whether it is something that has come at some point in your life or you were born with it, has an impact on your quality of life and therefore your mental health. 

Here are a few things you must consider, if like me you were born with Congenital Heart Disease. 

It is advised not to get to get tattoos or have piercings, but if you chose to you are advised to keep the broken skin clean. 

Oral Hygiene is important, for the same reason you are advised not to get tattoos or have piercings. You are at risk of Endocarditis.

‘Endocarditis is a rare and potentially fatal infection of the inner lining of the heart (the endocardium). It’s most commonly caused by bacteria entering the blood and travelling to the heart.’ The infection is caused by bacteria getting into your blood stream and making its way towards the heart.’ This was taken from the NHS website

For this reason I carry a medical warning card. (I will be writing another blog about this where I will go into more detail)

Here’s something people don’t often think about when going on holiday abroad: insurance. Due to my Congenital Heart Disease I have to get a high level of insurance when I go on holiday. So it costs a lot more money for me to just go on holiday with peace of mind. The other problem with insurance is that a lot of companies won’t even insure me. That’s a nice thought isn’t it, that my heart condition is too expensive. 

Another way of looking at this is, my life is too expensive for these big insurance companies to want to cover it. That it’s not worth the investment of their company to cover the cost of my life. That really takes its toll on your mental health. Am I not worth it? I am not worth them making money out of me because they know they would lose money insuring me. Let that sink in. 

The other thing which can have an impact on your mental health, which you may not consider is family planning. Yes, pregnancy and heart health are obviously linked. But did you know that if you had heart disease the chances of you having a baby with Congenital Heart Disease is slightly higher than the normal population. The normal population has about 1% chance of having a baby born with Congenital Heart Disease. If I ever have children that goes to between 2-4%. It could be as high as 50% in some cases. 

Imagine carrying a child knowing you are at a higher risk of having a baby with Congenital Heart Disease. This does not mean you shouldn’t have children. There are plenty of resources and support available to those who want to start a family. Knowing that there is support is important. I suppose you could always get in touch with the congenital team at Leeds  and discuss any issues and concerns, but your Doctor will also be able to help.

These are just three things which can have impact on your mental health. Three very big things, which are either big life events, or things which stop you from being able to do what you want. Well, they don’t stop you, but they will have major implications if things don’t go to plan, mostly these things involve your life. 

I am not saying these things to make you feel woe is me. I am saying them because they are true and they can have impact on your Mental health because you have to be a lot more careful than others. It’s not as easy as just go an do whatever you want, because you can’t. You have to really think before you plan a holiday. I don’t want to risk Endocarditis so I don’t have piercings or a tattoos. No I am not boring I just read the warning label and decided a piercing isn’t worth it. 

Over the past year I have been cycling and walking to raise money for the British Heart Foundation and The Children’s Heart Surgery Fund. I have just over 2 months to go and have raised £1467. I aim to raise £3000. 

In terms of miles I have done 943.77 miles. 

Raising the money is hard, but what’s harder is getting people to realise why I am raising the money. It’s not just about immediate implications of heart disease, it’s also the aftermath. Not being able to live your life how you fully want to due to the nature of your condition. This really takes its toll on those living with a heart condition. By supporting my fundraising you are helping to support those living with Heart Disease. 

Heart Disease doesn’t care that you can’t buy life insurance because of the Heart Attack you had. Heart Disease doesn’t car e you’re exhausted after walking up the stairs because of the Cardiac Arrest you had. It also doesn’t care if you want to have children. 

But the British Heart Foundation, the Children’s Heart Surgery Fund, they do care. They care about supporting those living with Heart Disease, they care about improving quality of life. They also care about beating heart disease. But they can’t do that without your support. 

Thank you for your support with my fundraising. I turn 30 in August. I was born with Congenital Heart Disease and had open heart surgery at a week old. It was on the 21st of August 1991. My Brothers 5th Birthday. 

Donate Here

All the info I have got for this blog has either been through my own conversations with Doctors or from this handy website here

Back to it again

Hello again, 

Hope you’re all well. This week has been the first week in about four months I have had to leave the house for work. This involves me getting on the train. 

The first day back on the train was ok. The conductor helped me on the train and to find a seat. If someone offers to find me a seat I say yes. The reason is that I have learned it takes away the visual stress of having to do this myself. As the trains are busier than I expected this is something I will continue to do. 

When I go into the station I use on my way to work I found that the one way system has been changed. This now means there is no one way system on the platforms themselves. Only on the bridge routes linking the platforms together. This I can see making life a bit more difficult as things get busier. If they keep the one way system on the bridges it will really help. 

One ways systems are better for Visually Impaired and Blind people because we don’t have to worry about navigating people coming towards us. It really reduces the levels of visual stress. 

Once I am off of the main bridge and down towards the barriers things became a bit stressful. The reason being they are relaying the floor. So there are barriers which means my brain cannot easily find a quick route around them. It wasn’t too busy so I just took a bit of time and wandered slowly where everyone else was going. Once through the barriers I noticed the same thing. I stopped. 

The issue is not just the visual stress, but the unexpectedness of the train station having work done to it. Once I knew where I could walk I just focussed on the exit and made my way towards it. 

The next issue with all of this is that I am using my long cane. This means I am sweeping the floor to find out where things are. So when a surface changes it can impact how I am going to navigate my way through the station. After a few trips to work and home I am feeling a bit better about it. 

I just want the work to be quickly so I don’t have to deal with ongoing upgrades to this station. 

The work they are doing though is very good. It will definitely modernise the station which is something that has been needed for years. One of the biggest improvements is the new glass ceiling. It really lets in a lot of light. Which compared to how it previously was is so much better. The ceiling used to be old darkened wood. 

Please be mindful while you are out and about as a lot of people are feeling anxious. Disabled People find travel difficult at the best of times and we are having to navigate a new way of travelling. We want to be able to get out, get to work, see our friends. We just need you to be patient with us. Going back to normal is a scary thought for some of us. I am not looking forward to jam packed trains and people pushing and shoving me because they can’t wait. Lets just be nicer and be mindful of others as we ease out of this lock down. 

Be back soon, 

Philippa B. 

While you’re here please check out my fundraising page.

my guide cane is in the foreground, there are two blue seats the background facing me, with two 'Out Of Use' signs pace on the tops of the seat.

Where to sit?

April Update

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

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 Update

Featured

Hello all,

Today is the 11th December. We’re just sorting out the Christmas tree and the lights have been put up outside. Last night I didn’t sleep to well so I’ve not been able to do everything I wanted to do today. But I have created my Facebook group to try get people more aware of my fundraising on Facebook.

So for those of you who have just stumbled across this blog here’s what my fundraising is all about:

I was born with Congenital Heart Disease and had heart surgery at a week old. I had heart surgery at Killingbeck Hospital in Leeds. Next year will be my 30th Birthday and a big milestone since my surgery. Therefore I have decided to try raise £3000 for The British Heart Foundation and The Children’s Heart Surgery Fund.

In order for me to raise this money I will be doing a number of things throughout the year. First of all I am doing 660 miles, broken down over 4 groups of 50 days. I have already done 100 days where I’ve done 278 miles. I am now onto my 3rd lot of 50 days. Where I need to do another lot of 180 miles. To do this I am counting my steps taken on a daily basis and cycling on the bike in the garage.

I have been in the T&A where I talked about my fundraising, my heart surgery and why I am choosing these two charities.

So far I have raised £732, that’s £899 with gift aid. Thank you to those who have donated so far! Click here to donate.

Screenshot of fundraising goal, £3000, total raised £732, with gift aid £899.

According to the BHF:

Heart and circulatory diseases kill more than 1 in 4 people in Yorkshire & Humber.

33 babies a month are diagnosed with a congenital heart defect in Yorkshire & Humber.

Around 210,000 people are living with coronary heart disease in Yorkshire & Humber.

These are some truly horrible numbers to have to take in. But there is hope. Which is why I need you to help me raise this money for both the BHF and The Children’s Heart Surgery Fund. These charities aim to support those of us who have been diagnosed with heart conditions.

The Children’s Heart Surgery Fund are based in Leeds and do some truly wonderful work helping to support families from the moment they discover their child has a heart defect.

I have been to the heart unit many many times and the staff are lovely. They truly make you feel cared for and explain absolutely everything.

Please help me to make a difference to the lives of those living with Heart Conditions. Donate your morning coffee, £3 and share my page to get me to my goal.

I started the 3rd lot of 50 days on the 3rd of December and have already got my 180 miles down to 136.07. So I am on my way.

My next blog will go into the map I am working on and show you where in the map we are ‘traveling’ to. Click here to read more about my fundraising.

Thank you for reading,

Philippa B.