Can’t get over minor health diagnosis

[Fi1982]

I’ve had health anxiety for years, and have always dreaded the day a doctor would actually find something wrong. Now that day has come, and I’ve been provisionally diagnosed with a minor heart valve leak (more information pending further examinations).

I’ve been told this isn’t a big deal, may never become serious, and even if it does, there are valve repair/replace options available which will fix me. Internet research suggests the same. But I just can’t get over this diagnosis. I feel like my life is over at 38. I feel like I’ve got a ticking time bomb in my chest, and I’m devastated that I’ll never be fully ‘well’ again. I can’t believe that I’m going to have this condition for the rest of my life. I feel tainted and really alienated from normal, healthy society. I honestly didn’t see the point in carrying on yesterday, and I haven’t felt like that in over a decade (lifelong anxiety and depression). I suffer from complex PTSD from various past traumas and I feel like I just can’t get over the shock of this news.

Can anyone out there relate? I feel so low and pathetic and I’m horrified at myself for this reaction and my inability to get it together and move forward.

I have a member of my family who was diagnosed with the same thing a few years ago. Apparently she may have had it from birth, without it being picked up before.

She's the same age as you and has gone on to have another child since diagnosis. She carries on exactly as she did before she knew she had it, and this has been about 15 years now,
She may need a valve replacement later on in life but at the moment is fit and healthy and living life to the full.
Your health anxiety needs to addressed first so that you can live with this without being completely overwhelmed by it.

Thanks very much for your replies. @unknow01 I will check that book out, thanks.

@Iwasonceabrownie (I too was once a brownie!), that’s really helpful and reassuring, thank you. Other than a couple of very helpful replies on my other thread about this in General Health, I can’t seem to find much online about people living with this day to day, although I can find a lot about people dealing with open heart surgery to correct it. I don’t really want to fixate on that though! It’s really nice to hear about someone my age living with this like it’s no big deal.

I’ve booked some therapy sessions to help me with the health anxiety and explore why I’ve reacted this way to a fairly innocuous diagnosis. My childhood/young adult trauma is probably partially to blame, I have terrible control freak tendencies due to having no control in certain situations for many years.

If you're on Facebook there's lots of support pages. "British Hearties: Worldwide Hearties Survivors Support Group" is a brilliant one (you don't have to be British of course!). Might be worth hearing other people's experiences to put your mind at rest a bit?

Sorry you have such a shock.

I was diagnosed with quite severe underactive thyroid when I was 29...it does make you feel a bit weird but in time it will just become normal.

I've also had therapy for health anxiety (not related to thyroid) as has a friend of mine and it was invaluable, so hopefully yours will work just as well.

Hi, I can relate to this. I was diagnosed with minor leaks in my heart valves. Had to be monitored for 8 years to see if they were deteriorating. At first it was hard to get my head round but as time passed and each check up confirmed no change I stopped worrying so much. There was a couple of days where it hit me like a ton of bricks and I had a wobble. But essentially, I adopted the, well I feel fine, so I am fine approach. After 8 years I was told there was no change and it was congenital, so born like this and nothing to worry about. I do ever, have to take some precautions as it does mean I am more susceptible to a heart valve infection / problems. Good oral hygiene / flossing for instance as that can lead to infection / bacteria getting into blood which can affect the valves. Also antibiotics before dental work. Don't give blood due to 'unnecessary' risk but very minor risk of an infection from procedure.
Other than that I live a normal life and it has helped motivate me hugely to live healthier and keep fitter. I also reassure myself that if one day I do need replacement valves, with each passing year the expertise and knowledge for this is improving. I. E. Most people getting it today live a normal life, so that will even more so be the case going forward.
It is upsetting and worrying, however it can be managed and if you do need them replaced, that can be done also. Take time to get your head round it. Be kinder to yourself. It's understandable to be upset and thrown by this. Best of luck!

Hi OP
Sorry to hear this, you sound like you're having a really hard time.
I've had this diagnosis recently too. I think it was found incidentally as I was hospitalised for something else and kept having abnormal ECGs and a very rapid heartbeat. I was in agony. It turned out to be a pleural/ lower respiratory infection which was fixed with antibiotics.
The consultant is giving me a follow up call in Feb (diagnosis was in Nov) but said it was no cause for concern.
How did you come to be diagnosed OP?
I too have health anxiety and also, OCD, anxiety and depression ... it's hard work.
Have you received any specific advice or follow-up? Maybe your PTSD is indeed causing you to have a particular response to your diagnosis and hopefully counselling will help.
I suspect that dealing with MH issues on an ongoing basis sometimes uses up so much energy that it can deplete resources that enable a person to "bounce back" from such unwelcome surprises.
Hope you feel better soon xx

Thanks a million for your replies everyone, I genuinely appreciate them.

Very reassuring to know it's not just me walking around with a leaky heart! (Although I wish none of us had this problem of course). I've felt so alone today dropping DD at school (key worker) and popping to the supermarket. Kept thinking everyone else seemed so healthy and happy! Ridiculous I know, everyone's dealing with something in reality.

@Sameoldboat78 That's brilliant news about your valves, long may it continue! It gives me hope that mine will just be one of those minor things that fades in to the rich tapestry of my life 😉 I could do with my tapestry being a bit duller to be honest, but there you go. Thank you for sharing your story with me, it's really helped.

@MintyCedric I'm sorry to hear about your thyroid. It does underline to me how many people are dealing with health issues every day though. I've been so lucky not to have any issues until now I guess, 29 is very young to have to get your head around something like that when most people are just out having fun at that age.

@RoseRoseDaisy mine was also found incidentally, I was being checked for blood clots on my lungs and the CT scan picked up some blood regurgitation from one of my valves. The Doctor came in and said "all fine! Nothing to worry about, just a slight leak from one of your heart valves!" All cheery and upbeat like I'd won a church raffle or something I think that's partly why I'm giving myself such a hard time, she was so breezy about it and I've been snivelling in to my pillow for three days. But you're all correct, I need to be kinder to myself and realise that I need time to process the shock, especially considering I'm dealing constantly with MH issues alongside. I'm so sorry that you're also dealing with this diagnosis at the moment. What did they tell you in November - is it mild? Do they have any further info for you?

Follow up I've received - my GP is waiting on the hospital report and scan to come back and then we'll make a plan. I went for an observation appointment today with an amazing nurse practitioner and she said my obs were excellent and she couldn't hear a murmur or anything suspicious, so she believes my leak must be miniscule. My GP surgery have been brilliant actually, the same nurse talked me down last night and then gave me this appointment straight away today as she could tell I was suffering with my anxiety. It's helped so much to know my heart is basically ok and I'm not about to keel over 🙂