I come to you with a very special post today. The following interview was completed by an individual living with a very complex heart condition, who happens to be one of my closest and oldest friends.
Sophia and I met at the very beginning of secondary school (almost 12 years ago now!) and have been friends ever since. *I’ll insert a picture of the two of us below*. She’d never say it about herself but she is such an inspirational person. Her ambition; sense of humour; attitude towards her condition and life in general; and kindness are just a few of the many things I love about her. Sophia is going to explain all about her life and what it’s been like living with this heart condition since birth.
Tell us a bit about yourself
Hiya I’m Sophia, I’m 23 and I live in Maidstone, Kent. I am Kent born and bred and am yet to live elsewhere.
I’m very fortunate to have been able to work throughout the pandemic. I’ve always wanted to work for a charity, and in March 2020 I was so happy to start my new role as Operations Administrator for a charity in London, which I love! Unfortunately I only made it into the office for one day, so I’m looking forward to going back and exploring London when I can.
Away from work I am a massive binge watcher of TV series and films. I love getting lost in a series and then finding out all the interesting facts/trivia to share with others. Musicals are another interest of mine, and in normal times I would try and see (at least) three each year. It’s just such a magical world, but for now Spotify is helping me get my musicals fix.
Recently I’ve also been getting back into reading, and have tried to really broaden my usual reading taste. Also, I have jumped on the banana bread/cake making that the whole of UK has been doing during lockdown. I’m not a baker and usually stay well away from the kitchen. However I wanted to be able to bake at least one thing. So I am proud to say that I can now make banana bread/cake!
Finally, one big thing about me is my invisible illness. I have a congenital (from birth) heart condition. The only physical indicators of my illness are my scars and the blue tint to my fingers/toes.
What is the official name of your heart condition, and what does it involve?
Haha, what a question, I think it would be best to list what I have:
- Complex pulmonary atresia with VSD and MAPCAS
- Reduced lung function
- Pulmonary Hypertension (PH)
In short, I was born without the pulmonary artery and have a hole in my heart (that’s the VSD bit). Last year I was also diagnosed with segmental Pulmonary Hypertension which is a result of my heart condition.
I’m very lucky as I am really well all things considered. Right now, I only take Aspirin once a day and that’s it. This can change in the future (when, I do not know) and may have to have more medication or have different therapies.
Throughout my life I have had around 10 operations, 9 of those were below the age of 16 and I had 1 last year. Most of the operations were catheters to further understand my heart, and my first corrective surgery lasted 9.5 hours. I was scheduled to have further corrective surgery, but that was postponed for years. Then last year it was decided the surgery couldn’t go ahead due to the Pulmonary Hypertension.
This means that I now go to hospital twice a year to meet with my fantastic consultancy team. Depending on what has been prearranged I will have blood tests, ECG, the walking test, blood pressure taken, echo’s and sometimes an MRI scan. After the tests I will have my consultations which can take up to an hour. I don’t mind doing this twice a year, I call it my MOT, and it’s nice to understand how I am physically doing.
In what ways does your heart condition affect you on a day-to-day basis?
In some ways it’s hard to identify what affects me daily, as I have always lived with this and I don’t know any different. However, since my PH diagnosis last year I have become increasingly aware of different things that are now (and probably always have) affecting me.
The one obvious thing is shortness of breath. We have two flights of stairs at home and I’m finding I need to have a ‘pit stop’ on the landing or our bedroom, to give me time catch my breath. This doesn’t happen each time I go upstairs, however if I’m carrying washing or books, I’ll need the ‘pit stop’. The breathlessness also occurs when walking. Since the pandemic I haven’t been walking as much as I normally would and I think this, combined with PH, has made me more breathless. Walking up a hill has never been fun and now I’m having to stop 4/5 times.
Another thing that has become greater is the feeling of exhaustion, tiredness and general fatigue. I don’t think that this is super bad, but noticeably different from a few years ago. Sometimes I don’t have or struggle to get the energy to do things such as tidy the room or hoover. I also feel the need to have a nap, or a lie down during the day. I try and avoid napping especially during the week when working, as I won’t be able to do this when I return to the office. But I do have a lazy lunch hour, where I can have a rest on the sofa to watch TV or read.
There are other small things that affect me day-to-day, but they have always been there and aren’t as impactful as the above.
What is it like travelling with a heart condition?
In one word, interesting. It depends on where you go and how your condition impacts you. For me I am still able to get about unaided and I only have one medication to think of, so I don’t normally have to prep a huge amount.
If I go on holiday to Europe it has always been straightforward (touch wood) as I do not require oxygen for the flights. I ensure that I have relevant letters on me that state my medical condition just in case anything was to happen. This way they can see that I have a complex condition and would know who to contact in the UK. Fortunately, nothing has happened whilst I’ve been away so I’m unsure how I would be in the situation.
The insurance is a sticky point as normal insurance companies don’t cover my needs. We use The Somerville Foundation as they provide amazing advice on where to get the best insurance.
Travelling to Singapore:
I have travelled further afield as in 2018 my partner and I flew to Singapore for a two-week stay. Now this was a really interesting and slightly stressful thing to organise and do. My Doctors weren’t sure if I would need oxygen and for how long, as it’s the furthest I have flown, so it was a real experiment.
Emirates was our chosen airline as they provide free oxygen tanks if you medically meet the needs. We had to send off an application to the airline, who contacted my Doctors and the Emirates Doctors to confirm my medical needs and to check they were all happy for me to travel (which they were!). Also we broke the 14-hour flight into three segments; we flew for 7 hours to Dubai, had a 7 hour stop-over, then completed the final 7 hours to Singapore. We made sure we had a long stop-over as we weren’t sure if I’d need recovery time from the flight. However it went really well and not once did I use the oxygen (which Emirates ensured was on each flight).
Also, huge shout out to Emirates as they made me feel super safe and looked after from start to end. As it went so well last time, when I next go to Singapore or elsewhere, I will try and follow the same routine and get oxygen just in case.
How do you keep a positive mindset despite living with a heart condition?
I would be the first person to admit that I am not a positive person. Some would say I am pessimistic, but I like to think of myself as realistic. In some ways this is great and I’m happy being a realistic person, but sometimes I’ve had to learn to be more positive and this hasn’t come naturally.
What has helped is the way in which I have been raised. Although my family are very protective and have wrapped me in cotton wool to a certain extent; day-to-day they have treated me the same as everyone else and like my younger brother. My friends don’t treat me differently and our conversations/meetups together aren’t focused on ‘my needs’. It feels perfectly normal, well whatever normal is.
Another thing that has helped is speaking to people about my heart condition. I love being open and embracing this part of me. I’m not shy to answer questions, to explain my feelings, and I’ll happily talk to friends, family, colleagues and employers about it. It has helped me feel heard and it makes me feel as they have a better understanding. I think talking helps all round.
The other thing that helps me stay positive, now stay with me on this, is allowing myself to cry when I need too, feel sorry for myself at times and to grieve for the things that are difficult or unfair. My feelings are valid and it’s ok to embrace it. I always feel more positive after a down day and allowing myself to feel sad/sorry for myself. It’s part of the process and I know that tomorrow is a different day. Also, it helps that my partner, friends and family are so supportive.
Is there any advice you would give to people going through the same thing?
In the same vein as question 5, I’d encourage them to do what feels best and not to suppress their emotions. Be angry, be sad, be heartbroken, be confused, be scared, and be worried. It’s ok to feel that and if crying helps then cry as much as you need to. Try talking to your friends/family/or whoever else as it really helps. If you think therapy could be beneficial to you then explore that route too. Speak to your consultancy team, they are there to support/direct you into services that will help.
Also try and do what you want to do! Whether that is travelling further afield, or going for that job that you would love to apply for but are unsure if your body would cope. I say go for it and seek the support you need to succeed. You’re the only one who properly understands your own body and your limits. So use this to your advantage and believe in how you feel.
My other bit of advice is to learn about what you have. This is so much easier said than done, I’ve only just started doing this myself. I haven’t been ready to deal with it or face this new change, so I ignored it for a while. But knowledge is power, and you aren’t alone. The internet can be a fabulous place in finding different charities/organisations that supports people like us.
Just remember you are amazing and not alone!
Have you made connections with anyone with similar conditions, and how?
Kind of. It’s a little bit complicated as my heart condition is super rare and I have never met anyone in person that has the same as me. However, recently (like two weeks ago) I connected with someone via Instagram who has my heart condition and PH. Both of us had never connected with another person with the same condition. It was so exciting, I think for both of us, as no one could relate more. As it’s so recent we haven’t delved into the nitty gritty questions but have kept in touch just about life generally. It would be lovely to keep this connection going.
I’ve also joined a Facebook group that is specifically for people with PH in the UK. Even though I haven’t connected with people as such, I really enjoy reading people’s post and comments. I’m building up the courage to join in the conversations, but already it’s nice to read about people and feel connected in that sense.
The only other place I’ve connected with people is in the hospital itself. Although I only connected to this person as we had four days on the ward together.
It’s surprisingly hard to connect with people for a number of reasons. Mainly when the clinics are being run, everyone is wrapped up in their own world (I know I am). This can make it hard to think about connecting with those in the waiting room. Also, the rarity of my heart condition and of PH makes it even harder to find similar people. This is why the internet is great, now that I feel ready, I am actively seeking out similar people.
Do you believe there is enough support available out there (both physiological and emotional) for people with heart conditions/PH?
Yes and no. Unfortunately, it’s not a simple black and white answer, there’s a lot of grey. My hospital and consultancy team are amazing, I trust them with my life. I know that I can call/email to ask any questions or seek support and they can provide it; however, it’s not necessarily offered upfront in the consultations.
I also think that I have been reluctant to look into the support out there. The additional diagnosis of PH last year took me by complete surprise, it was scary and upsetting and I didn’t want to acknowledge what this could mean for me and my future. I need a while to process it and I just wasn’t ready to find it.
A year on, I now feel intrigued and ready to seek advice, support and relevant charities. This has only happened this month (exactly a year since the PH diagnosis), so I feel I’ve only just scratched the surface on the additional support out there.
After some Googling, I found the wonderful Pulmonary Hypertension Association UK by chance. Having had a quick look around the site, I decided to sign up for the free membership. It’s great as they ‘screen’ the members before joining, so it really is designed to inform patients, carers and those working in the field. I received a free welcome pack a couple of weeks ago and I felt so overwhelmed but in the best way. I had no idea just how much support, information and advice they had provided in the welcome pack and I am still working my way through it.
As time goes on, I know I will go and seek more advice and information, but for now I am happy with working through both The Somerville Foundation, and Pulmonary Hypertension Association UK.
What are your main goals for your professional and your personal life?
Ooh this is another really good question. I have learnt not to plan too far in advance as things never work out as I intended, and you just never know what will get thrown at you.
Professionally, I want to be up at my new job in London meeting and connecting with my new colleagues. However, due to Covid-19 my work has recognised the risk of opening up the office and we will not return till 2021. In a way I am gutted but also so grateful that our company are putting us first. So, my goal is to hopefully stay on and get a chance to commute and work in London. I love London and have always wanted to work up there, explore the city and see if my body could cope. I do love my job and who I work for, so am excited to see how this progresses over the coming months.
In my personal life, I want to focus on getting back to some form of normality and enjoying the simple things. That’s my main focus. I want to be spending time with my friends and family (I really can’t wait hug my Mum, Dad, Step-Dad, Brother and Grandma) in a safe way; I want to go swimming; visit the theatres (hopefully see a show or two); go to the cinema; wonder around museums and galleries. These are all the things I really miss. I also want to explore more of England in the coming year.
When it’s safe for us vulnerable people to travel, I want to book a couple of long weekends away in Europe (I have so many places I want to go) and then to see our family in Singapore.
What are three things you are grateful for?
Gosh I have so many things to be grateful for. My partner and I share our grateful/positives of our day, each evening before we go to bed. So aside from my partner, family, friends, my health, and being able to work, I would say that I am currently most grateful for:
- My bedroom ~ I live with my partner’s parents (they’re fab), but to have our own space has been so important, especially now. Our bedroom is like our own little sanctuary. It really has been my ‘safe haven’ throughout all of this. We have been able to decorate it as we wish, it’s full of books (all but two are mine :’D), trinkets and art that we have collected whilst on holiday. It really has made me feel so safe and it’s just home.
2. Colin the cactus ~ Now this is a strange one, I’ll admit, but Colin recently turned one. Last year he managed to show three flowers and since then we’ve had nothing. He wasn’t looking healthy and I thought I had killed him, however he bloomed again this year. He had so many beautiful, orange flowers. I was like a child checking for snow in Winter as each morning I would check to see if more flowers had appeared, and it’s bought me so much joy and happiness.
3. Amelie the Musical ~ specifically the Original London Cast Recording. It’s on Spotify so go and give it a listen. Until this week I had never heard of this musical, but my friend recommended it after he saw it last year. I’ve played it non-stop; the story is fab, the voices are brilliant, and the music is just amazing. I really hope they go back to the West End as I would love to see it in theatre.
Thank you so much for reading this post! It’s been a real privilege having Soph come on here and work with us on this. Of course there is so much more to her than her heart condition, but we really appreciate her sharing her story and hope that it can be encouraging for anyone out there who might be going through a similar thing.
Sophia’s Instagram: https://www.instagram.com/alwaysinadaydream_/
Soph’s partner also has an Etsy shop where he sells some amazing art pieces. We’ll leave a link to it here in case you’re looking for some new artwork for your home or to give someone as a gift: https://www.etsy.com/shop/StoppsyART
To find our other well-being posts, click here: https://www.emgoingplaces.com/category/well-being/