British Heart Foundation
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Feeling Lost

Hi All,

Just joined the community as I am totally lost and bewildered at the moment. I was admitted to hospital in August 2017 aged 61 to be told I had suffered Heart Failure. Shell shocked nowhere near covers the emotions or feelings of disbelief. I have been very lucky and am under a fantastic Heart Clinic. I have had the ECG's, Blood Tests, scans and MRI. Damage is to the lower left ventricle and my heart function was at 39% which is just below the red line of 40%. Been on medication for high blood pressure etc for last 8 years and thought it was all under control. I made all of the changes asked of me, cut out ALL alcohol, changed my diet and started to exercise more. Following a 24 hour ECG I have just had the devastating news that the condition has got worse and the heart function has dropped to 25%. I have now been referred to a Cardio surgeon and am awaiting an appointment but the talk is of surgery for some sort of heart pump or at worst open heart surgery to replace a heart valve. I don't know what or how to feel. I just feel lost and devoid of any feelings. Is this normal ? I just feel at a total loss.

19 Replies
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You have just made a very positive move by posting in this forum.

So many good people with an abundance of experiences that you can draw on.

Keep asking away if anything is troubling you.

I would say your current feelings and emotions are entirely normal.

Take care Desj😎

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Thanks you so much for your reply. I do feel like I am starting on the right path after going though the replies I have had to my post. Thank you

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Yes I agree, your emotions are completely normal.

Sorry to hear you are feeling so lost and down at the moment. It is not a nice feeling is it? You're kind of in limbo for a while when you get that kind of news. But today in the cardiac field, they can and indeed do, do so much to give us a better and longer quality of life. Much, much more than say evan ten years ago.

So you don't give up there, you are stronger than you think. And we are all hear to share our strengths with eachother.

Lots of hugs and best wishes for a bright future, Jo 😊

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Thank you, you are absolutely right, I do feel like I am in limbo and a bit lost. I think part of what troubles me is that I am usually a pragmatist and take things in my stride but this has knocked me side ways, which is a new experience in itself, let alone the illness. I am overwhelmed at the kindness and advice that has already been so freely give. Thank you.

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Your reaction is completely normal. You have just had a bombshell dropped on you, but it sounds like you are being well looked after by the heart clinic. Start making notes of any questions you want to ask when you get your appointment. I would also recommend taking someone with you, it is easy to forget things you are told if they confirm you need surgery.

I have had two aortic valve replacement ops, the latest one two months ago. Whilst it isn't a great experience, it isn't anywhere as bad as your mind let's you imagine. I was in hospital for 10 days, but only because I ended up having to have a pacemaker fitted post op. The first op in 2011 I was only n for five days.

There are a lot of us on here who have had open heart surgery for various procedures so ask any questions you have and we will do what we can to help you through this.

Wendy

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Thank you so much. I am just starting to try to take in what is in front of me. I don't of course at this point know whether it will be heart surgery or an ICD but your reply helps in trying to bring some perspective. I am of course terrified at the thought of heart surgery but seeing the courage and bravery of others makes me feel that I can get through it too, whatever it may be. That, I think is the main reason for me feeling all at sea, I just don't know at this point what I am facing so I can't take control of it. I know I need to gather myself and take control of this, as much as I can but feel like this is out of my hands. How long was your recovery after discharge from Hospital ? Thanks for your reply . Des

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Recovery will very much depend on what you have done. I am going back to work in two weeks time, which will be 12 weeks from my op. I found the first couple of weeks the hardest. Whilst n hospital you have the comfort of nursing staff around you - they have you out of bed the day after your op and walking day 2. I found it difficult getting comfy at night and would recommend one of those v shaped pillows or a rolled up duvet to raise your upper body slightly, but I could sleep flat after a week at home.

It only took a couple of weeks until I felt reasonably well, although concentration and memory were rubbish and took a while for my appetite to come back, but that is normal after being under anaesthetic.

Once you know what procedure you're having it will be a lot easier for you - the uncertainty is the worst part. You will be fine - we're here to help you through this 😺

Wendy

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Thank you Wendy, some very useful tips there. I suppose that I am just as concerned with what will happen after any treatment as I am about having any treatment. The positivity on this site and the posts / replies really are inspirational. They really highlight the resilience and strength of the human spirit. I know I need to pull my boots up, get my head together and fight this with all I have got. Thanks to everyone for their kind thoughts and support. Des

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It’s a terrible shock, finding out such facts about your poor heart. Be kind to yourself. The shock will lessen, and gradually you’ll begin to cope with it all. Many of us here have been through this, and reminding you, there is life to be had afterwards, and a good life, once you get the treatment you need.

Keep in touch.

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Thank you so much. I am kind of feeling that I am just starting on a scary unknown journey, but the support already on this site has been overwhelming. Thanks Des

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I agree with all the previous comments. You are in excellent hands. In my case, having a valve replacement, wasn't nearly as bad as I'd feared. Take care,

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Thank you so much, that is re assuring. Des

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Thank you all that have replied to my post. I am still feeling lost and bewildered at the moment but your kind posts and advice have helped me to start to gather my thoughts and to try to accept that this is happening and I need to deal with it. Thank you all . Des

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I had this op 4 months ago and I’m still fellow out of breath and get pain as my valve opens up. That’s wat I was told caused the pain.

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EEEEEEEEEEEEEEEEEEEEEEKKKKK !!!!!!!

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Des,

these things do knock us sideways. What is worse, it takes time to resolve generally. I'm 46 and I had a 12-hour quadruple bypass following a heart attack and stents failing. I wanted a simple fix, stents, but my body rejected them. 3 months after my heart attack I was still below the magical 40% number, so I also know the fear of "what might be", especially since I went and read about it - all the information scared the willies out of me. Don't do it!

The simple fact is that it took time for each step to work it's way through and the next step on the journey to be taken. The waiting and not knowing really got to me. The best thing I did was get introduces to my BHF Heart Failure Specialist Nurse at my local hospital at tell her what was going on in my life. When I told her how I was feeling she strongly encouraged me to get some help from my GP in the form of prescription pills to lift my mood. It helped a lot and I was only on them for a short period of time as I got it all straight in my head. I thought there was no happy end in sight and looking to the future filled me with fear and doubt, so much so that I considered "slipping away." She also put me in touch with other people in the hospital to get other help, such as using "mindfulness" to deal better with the situation mentally.

Now, just 9 weeks after major surgery, I'm recovering very well and looking forward to the future, something I didn't expect. I was home after 5 days and feeling better, although a little fragile for the first 2-3 weeks. I was going to the cardiac rehab (exercise) programme at my local hospital after just 6 weeks and doing some light DIY after 8 weeks. At the end of this month I'm hoping to be told that there is light at the end of the tunnel and that my EF is above 40%.

As I said, the one person who helped me no end was my BHF Heart Failure Specialist Nurse at my local hospital. She guided me to get the help I needed from the hospital, my doctor and other services. if she hadn't, I probably would not have been patient enough to let the medical heroes do their thing and therefore I would not be here writing this message of support to you.

Hang in there, it will get better. Concentrate on the now. Ask for and accept the support offered.

David

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Thanks David, all sounds like good advice. Coming round to the fact that I need to get ready for a fight, just not sure at the moment how big the fight will be but all the mostly positive responses do give me hope. Good luck with your own treatment. All the best Des

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Hello Des firstly nice to meet you.

Heart Failure is a really poor description for what we have, personally I just have a " Wonky Heart " Did you have a past Heart Attack or any other Heart related Issues besides High Blood Pressure to cause your low EF. I have a low EF which does go up and down so try not to focus on the numbers. We are all different in our symptoms and how we cope with them. Do you know anymore about "surgery " and what surgery they are talking about ?? I had a double by pass but it didn't lift my EF. I didn't even know I had a low EF it was only when the Cardiologist said the " By Pass " didn't really improve your Hearts Function that I started to understand it wasn't just a By Pass to prevent an MI but to try to improve my EF function. Next stage for me looks like opening my LAD which has been by passed in 2015 if that doesn't improve anything it looks like an attempt to open my RCA will be next, followed by some form of pacemaker. I am looking forward to having the angioplasty because I believe the Cardiologist wouldn't be bothering if he didn't think it would improve my prognosis, and consequently my long term outcome.

Looking forward is probably a wrong expression for the surgery, it should be Looking Forward to a good set of outcomes from the surgery lol.

Try to stay Positive, easier said than done I know, but Positive is so much better for your Health than the other thing.

Best Regards

Frank W

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Hi Frank, I could not agree more. Just being told "you have heart failure" struck terror in me right to my core. I understand a bit more about the terminology now and realise it is maybe not as bad as it sounds, although at the moment I don't know just how bad it is, or isn't as the case may be. Thanks for all the good vibes, it really is helping in lifting my spirits. All the best. Des

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