A very scared 38 year old being referred to heart failure community nurses

After a long year of many pneumonias I have been told I have fluid around my heart and in my lung because of mild LVSD. I did a very silly thing and googled it and now I'm really upset. The heart nurse came to see me in hospital and told me they wouldn't ordinarily pick up patients with mild LVSD and I suspect this was to put my mind at rest but all it has done is make me feel like I'm 'a special case' because she said they're going to work with me because I'm young.

The mild LVSD was picked up last year but no follow up was needed because I was told it was mild but I do get breathless on walking up the hill to my house and I have experienced pain on exertion.

As it stands I'm on diuretics awaiting for further input from the community team. I have an overwhelming need to take some control on this and I feel the only way is through diet and exercise. I want to give myself and my heart the best chance but I'm really very scared. I am trying to think that I am actually really quite lucky to have been picked up as I could be blindly walking around with problems and eating unhealthily. Knowledge is power but I just can't shake the frightened upset feelings to go with that empowerment at the moment.

Thank you for reading. I just needed to share as I feel like I'm struggling. It's quite a soul searching and lonely experience even though I have people who care for me by my side.

12 Replies

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  • Hello hygge....Please do enjoy that feeling of being a 'special case'. Because you are.

    You are special, because you are you. You are a living and breathing human being and deserve the care and treatment that is and should be available to anyone who needs it!

    I know and empathise with how you are feeling. First diagnosis and the feelings that follow this are scary and fear of the unknown just makes it worse.

    But you are doing the best thing.....research followed by reaching out to others with the same or similar health issues.

    Great to hear from you.

    There are so many things to research and one of the best things may be that you have been assigned a community team. Someone to talk with who knows what you are going through is invaluable!

    Good luck and good health for future.

  • Thank you so much. I have just had a call from the community team and have an appointment next week.

    I am so lucky. I'm reading so many stories of people who have much worse difficulties than I do I'm about to pull up my big girl pants.

    Thank you for answering in my time of chin wobbling.

  • Hi hygge....I know that chin wobbling too.

    I also remember searching online for some kind of community contact which was how I first found the Afib forum, and this one amongst others.

    As a person who would not ever join a social media site, it may show how desperate I was to speak with others with the same health issues. So I put in my first post.....and then sat waiting and watching for a response!

    And brilliant.....someone always replies! May not be immediately, but thats understandable....and the administrators are great - Chris is one who responds with good advice.

    I have ever since, read so many posts and responded to many others. I feel that I am no longer alone!

    It is another learning curve isn't it? Great news that the meeting is so soon!

    Take care and good health.

  • Hi there - sorry to hear about your diagnosis with LVSD, this must have been such a shock considering you're only 38. Keeping active and eating a healthy, balanced diet (that's particularly low in salt, as that can raise blood pressure and increase the workload of your heart) as you rightly pointed out are exactly the right things to be doing.

    These things, in turn, will help to keep your blood pressure and cholesterol down, which are both important to control when you have mild LVSD. The good news is that for most people this is a condition that you can live with and that doesn't necessarily get worse or get worse to the point where your life is impacted significantly.

    You might find that when you're unwell your symptoms get worse, and this is to be expected as the heart is under increased stress. It's important to check in with your GP about your medications and fluid intake during these times so you can get the balance right.

    I hope this is helpful, but please feel free to come back with more questions or call our helpline on 0300 330 3311.

    Take care, Chris

  • Thank you so much. I'm determined to ease the strain on my heart and most definitely I'm going to take some control. I have to thank you for putting my mind at rest in terms of this being mild and not necessarily getting worse quickly. I guess it is down to me.

    I am still worrying about it but that's because I have little knowledge just yet. Your words, coming from someone who knows a lot about heart problems, are extremely encouraging to me and I thank you for taking the time to reply.

    I'm off to go research about salt and the effect on blood pressure. Many thanks.

  • It's natural to worry, but knowledge is power! We have a video about salt on our website if that's interesting to you: bhf.org.uk/heart-matters-ma...

    Glad I could help a little, Chris

  • Hello! I'm a 37 year old with heart failure and moderate-severe LVSD. I was diagnosed six years ago and was absolutely terrified at that time too. I still have the odd wobble (and wobbly chin) but can honestly say I am now happy and hopeful about my heart (and life in general) the vast majority of the time. I live a full and busy life and get brilliant support through the NHS and through this forum.

    Diagnosis is a shock but great because your condition can be managed properly now. Hope your appointment next week brings even more reassurance. I'd advise writing down any questions as they pop into your head this week to make sure you get all the answers you need.

    I'm also trying to live healthily for the sake of my heart - not always easy, but so important. If you want to message me directly about anything at all, feel free. I'm always stalking out potential buddies with wonky hearts and really don't mind being asked awkward questions :)

  • I also have a Wonky Heart . When I see the Cardio next time I will ask him to explain a " Wonky Heart " I can tell him I have a buddy who has a " Wonky Heart " but she has joined a Gym can I join a Gym as well with my Wonky Heart ??

    Laura I so much prefer " Wonky Heart " to " Heart Failure "

    I sometimes have difficulty in understanding " Mild " " Moderate " " Severe " maybe Wonky = Mild More Wonky = Moderate or Very Very Wonky = Severe will be the new explanation.

    Currently

    Personally feeling good at More Wonky on the Laura Dropstich Scale

    Regards Frank W

  • Ha ha! I had missed this reply somehow. Glad I've spotted it now as I am most amused by it :) I think "wonky heart" probably does say just as much as "heart failure". And I only know my LVSD is classed as "moderate-severe" (aka more wonky - very very wonky) because I happened to see it written down on a hospital letter this week! I'm not sure I even understand what LVSD is, let alone how they categorise the severity. I will stick to the wonk scale in my descriptions from now on!

    In a similar vein, my daughter and I refer to my CRT-D device as my "magic machine" and my daughter will tell you it makes my heart go boom-boom rather than wobble-wobble. She's right, it totally does! 😂

  • PS How DID you know I'd joined the gym?! I swear I haven't ever mentioned it! ;)

  • Hygge

    No need to be afraid, Wonky Heart Nurses are good. I really believe they are in it as a vocation rather than just a job !! Being a Grandad myself I would adopt my Wonky Heart Nurse as a Gran Daughter any day I feel that good about her skills.

    Regards Frank W

  • Thank you for your camaraderie! I'm still sad and scared but I can see, in time, I'm going to adopt one hecknof a sense of humour about all of this! I think we have too

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