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

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 

A Quick Update

Hello, 

This week I have been taking some time away from Twitter. That’s why my blog didn’t go up on Monday as it normally should do. 

Part of the reason for taking time away is the need to reduce screen time. Working from home is nice and I like it in some ways. Not having to deal with public transport. Not having to put up with people staring at me as use my cane, yes I’m Visually Impaired, I can see stuff- just not as much as I’d like. 

It has been nice not being on Twitter, putting my phone on silent and just spending time away from my devices. I’ve also had 4 days off in a row as I booked in some holiday. So this was the perfect time to take time away from my devices as well. 

Over the past two weeks I have found myself busy with work, which is another reason for me to have some much needed screen time. I get quite involved with areas which I am passionate about and then I tend to use up a lot of energy in doing so. Maybe this was a bit of burn out? Who knows. 

The other thing I have noticed is that I need to be kinder to myself with my cycling challenge. I feel as though I need to push myself more to get the miles done. Which I do, but I also need to remember that this is a challenge for myself to raise the money. I have been quite open about my Scoliosis and how it effects my cycling challenge. I am pleased with myself, I have raised £1087 without gift aid. The charity’s which I am supporting are The Children’s Heart Surgery Fund and The British Heart Foundation. I aim to raise £3000 before August 2021. Here is a link to my ‘What’s virtually happening page’. 

A yellow daffodil

So that is me for this week. Just a quick update. Be kind to yourself. Remember Spring is coming, so we’ll be able to play outside more soon.

I’m on Twitter: @PhilippaB

I’m on Instagram: @VisuallyImpairedPip

Checking in

Hello, 

It’s a busy time of year again. Although with everything that is going on it should be a lot quieter this year. I am looking forward to Christmas, even though it will be different. 

Most if not all the shopping is done. I just need to wrap stuff now. So today I have I been getting on with some cleaning and I will be hopefully getting on with some wrapping if I have the time. The tree was put up last week so that is all done. Mum has made her centre piece for the table which is beautiful! 

I have been a bit busier the past few weeks than normal so I have been glad for today as a day off to get some cleaning done. If you’ve been following my blog for a while you’ll know I have a page on here for my fundraising. I am currently trying to raise £3000 for the British Heart Foundation and Children’s Heart Surgery Fund. So I’ve been cycling on the bike in the garage and counting my daily steps. In total aim to complete 660 miles. It has been very hard because I have a curved spine and it causes me pain on a daily basis. However, it is nice being able to do something for two charities I am very passionate about. Click here if you want to know more. 

For now, I am just sitting here writing this. I knew I hadn’t written a post in a while and wanted to drop in. I hope you’re all well. 

In terms of wrapping presents I am going to try get that done this evening, but being Dysrpaxic might make it more difficult. I have a very big box to wrap and its quite heavy so wish me luck. 

See you soon, 

Philippa B.