Feeling lonely over changes as I grow up, and worried over the future of healthcare… plus anyone here in their mid-20s?

[PigeonTree]

Hi everyone,

I have a Ventricular Septal Defect that was closed with surgery when I was 6 months old. I am now in my mid-twenties and over the last year or so have really started to notice a change in my abilities.

I’ve had check-ups my whole life, so it was quite a shock to find out at 18 that my heart was not as strong as a ‘healthy’ heart. In hindsight (and even at the time) it makes complete sense, I guess I was just shocked that it took until 18 to be told.

In January last year, I went to the doctor to report that for the first time I was noticing a difference in my ability to keep up with others. Any prolonged or uphill walking, or stairs puts me out of breath more than should be normal. I’ve started to adjust to what my personal normal is, but it’s been emotionally hard to be seeing these changes when I’m still young.

I’ve also been feeling anxiety over the waiting times for healthcare and future of the NHS. From my check up in January 2024, it took a chase-up and then until September to actually hear back properly. And the answer I got was just information I already knew and ‘we’re sending you for another check up’. The appointment date I got isn’t until April this year (2025). At the time of being given it, that was a 7 month wait! I took it as a good sign that hopefully a lot of my worries are just that, but then I can’t help but worry about what might have been missed, or if anything is changing in the meantime.

I also get anxious thinking about my family members who also have heart conditions worse than me, all diagnosed in the last decade or less. So far I have been lucky that my one surgery has been enough, but I have family (including children) who are on medication, have pacemakers, and have had bigger surgeries. Alongside the worries for their health, I guess there’s a part of me that wonders about if I ever have a child, will they also have more drastic heart issues? And with how much worse my family’s conditions are, has something major been missed in me because I was diagnosed in the late 90s and not in the last few years?

Overall, I guess what I’m after right now is community.

Has anyone else had/have these same worries? Do you have any advice or guidance?

How do you navigate day-to-day anxiety triggers when anything about hearts/heart health gets mentioned?

And is there is anyone else here in their twenties? Who is used to being the youngest in the hospital waiting room by 40+ years? 😅 And who is getting to grips with not being able to keep up as well as you’d like to?

If you read this far, thank you for listening. Have a lovely day ❤️

[meadfoot]

So sorry to hear of your heart concerns and the anxiety it is causing. Its perfectly normal to feel stressed under such circumstances. I have found that I need to ensure I have as much control as possible with my heart condition and that includes pushing hard for the medical care I need ongoing.

If you are not getting timely answers and left worrying ongoing its reasonable to keep chasing your medics for updates, tests and support. Sadly in life the quieter ones who sit patiently can get left behind somewhat.

Its perfectly acceptable and perhaps prudent to chase your medics if you do it in an assertive non confrontational manner and not give up until you get relevant tests, treatment plans and emotional support too. If your medic doesn't respond then perhaps its time to change your medic or at least get a second opinion.

Chasing to get the care you deserve is stressful but probably less damaging than living with constant unrelenting anxiety. Wishing you and your wider family well. We have one life ensure you get the very best help to live it fully. Best wishes.

Ps my cousin now forty years old has/had a very bad heart condition caused by a viral infection as a young child. She has gone on to have heart surgery in her late twenties followed by having two beautiful healthy daughters of her own. All is not lost, fight your corner. X

[ScoobyDoo71]

morning, here’s a link to Somerville heart foundation it’s set up for adults with congenital heart disease sfhearts.org.uk

It’s got people of all ages and a Facebook page.

It’s scary at times when hearts start to misbehave. Are you under a specialist ACHD clinic ?

Good luck with everything

[PigeonTree in reply to ScoobyDoo71]

Not with an ACHD clinic as far as I’m aware but I’ll be looking into it, thank you!

[devonian186]

Is there anything you can be doing to help yourself and imp[rove your ability to "keep up"?

For example, are you overweight or unfit or don't eat a good and varied diet? Is your home warm, with no mould or excessive condensation?

[Whiteghost]

It's a scary place to live. I'm afraid it feels everything needs fixing, not just us. When people like us have health problems it feels like a minefield. Try and keep positive, take each day a step at a time. But firstly put yourself first. Thinking of you. Keep strong.🤗

[MoretonCross]

Hello PigeonTree, Of course I read to the end, and thank you for wishing me a lovely day. 😍 It's been just short of four months since I had OHS at Blackpool, and it's there I saw the very best of the NHS. I was 78 at the time and fitted in a treat! I can't really imagine what it must be like being in your position, it must be very difficult all round. Obviously many of us fear for the future of the NHS, maybe most of us, and it's a real fear. It can't carry on as it is forever, that's for sure. The GP service is a worry for us all. So many of us have stories to tell, not only members of this community but our friends and family members also. I know I have. Scandalous really. I've got no answers, of course. But I understand your anxiety and frustration, and all I can say is hang about on here, become part of it and maybe it'll help a bit anyway. 🙂 So stay strong, fight the good fight, and enjoy living your life day by day. Remember to keep us in the loop, good luck, and have a great day 😀

[Knavesmire27]

I am so sorry to hear all that is going on for you at the moment. I am a lot older than you but did recently have mitral valve replacement due to a childhood illness and I do understand your fears. What I wanted to say is that when I was in hospital in November there was a huge variation in ages of the people on my ward. From late teens to over 80's and lots in-between. All of us were scared, worried about what the future holds but there was also a closeness we all shared as we swapped stories and supported each other. Please know you are not alone and dealing with this at your age in the way you are doing shows courage and bravery. Please be proud of that. Take care and wishing you well.

[Bingocaller]

I really feel for you my mother died with bad heart condition and so did her 7 siblings and my farther so I knew I was in for it I have had 2 HA s and 2 stents I know how heard it is to not get flash backs and lots of anxiety I really do understand but your very young and got a lot of living to do so you must live your life and try to do all you want I do and I’m know 80 so if I can do it you must very best wishes.