I have only just found this site which is a shame but I'm a 29 year guy who had open heart surgery at the age of 25 due to Endocarditis which happened all very quickly! I admitted myself into hospital and had the operation within a week! I now have a metal Aortic replacement valve and will be taking warfarin for the rest of my life. (MY GP was a idiot!)
I struggled tremendously with panic attacks and anxiety attacks for a good year after surgery I would assume this was because of the speed everything happened and I had no time to come to terms with this massive life changing event (I thought my heart was stopping!! crazy I know!) I still suffer with anxiety but I have now come to terms with it and control it without the need of tablets or therapy (I was never given the option by my GP anyway as they are hopeless)!
I just wanted to share my story so if anyone feels panic attacks/ anxiety or even depression there is a way of coming to terms with this and I am here if anyone would like to talk about it!
I had no one to talk to when I was going through this alone so I just want to put my hand out for anyone else who maybe in a similar position to that I was in.
P.S I now do everything that I was doing before my operation as well. Play football, go the the gym, have a few beers. (my anxiety hit me hard for social events for some time but just face it head on )
Thanks for reading.
Have a great day everybody
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Evans90
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I am really interested in your post .It all must have been a massive shock to you .
Kind of puts my situation in the shade but I have still been diagnosed with Heart failure , taking various meds including a so called dirty mechanism called Amiodarone am waiting to see if I will get the horrible side effects .
Anyway way I am not depressed as such but I am anxious about my future .I would be really interested how you cope with the anxiety .
I cope by remembering that I am now in a much better position than I was in before my heart surgery. every second of every day is precious and you must enjoy it. Taking every day as it comes and appreciate the small things as they are the things that mean the most to me nowadays.
I suffered massively in social environments I.e going shopping (tonnes of people) which triggered my anxiety. By the way I had never suffered with anxiety before my op. It may just be me but as I knew what triggered it I just kept forcing myself to get into th we situations and deal with it. Some days were worse than others but eventually my mentality changed due to this.
Regular exercise helped me massively as this was a release of all anxiety and was just “me time” even if that means walking around the block a few times.
Another trigger of anxiety is that I can now hear my heart tick. (The valve opening and closing) when ever I couldn’t hear the click I used to panic and think my heart was failing- This is
Something I do struggle with the most but everything gets better in time if u tackle things head on. This may not work for everyone but worked for me. Get yourself out there what you were doing before surgery (consult your doc First if it’s something mental like sky diving)
I used to wake up in the middle of the night with bad panic attacks as I used to dream of my heart stopping.
You just need to occupy your mind. I.e I go gym and play computer games and have time with friends as well as alone time . It’s just an escape but with that comes the knowledge that you are well and healthy because nothing bad has happened.
Night times used to be horrible for me so you are not alone so don’t worry
I used to wake up sweating and in a panic
Do u do any physical exercise?
It got better for me once I started to exercise. It took me a while to get into it as my mentality wasn’t right but as soon as I did the nights got better and now I sleep very well.
Routine also helps massively . Go to bed at the same time Every night . Exercise releases serotonin and this helps massively with mental health
You are an inspiration after what you have been through and pulled yourself through even with the lack of support something that seems to mentioned by many people lately. Well done and for thinking of others on here.
Thank you Nathan. forums like these need to be promoted more as I could have done with this a long time ago. Just speaking to other people and knowing you are not alone is awesome !!!
I’ve already changed practices but good advice for anyone else who reads this thread
Hi Evans, I also had open heart surgery when I was 25, but for muscle growing inside of my heart, I was told that if I hadn't of had it, I probably won't have lived beyond 40, the age I am now & may live until I'm 70
I have to go for regular checkups for the rest of my life as have other heart problems & have since got others & may @ some point have to go back in again for surgery
Well the surgery has put you in good stead and I bet you look at life in a magnificent way . A way in which you wouldn’t have if you didn’t have this surgery 💪💪 life is worth living and fighting for 😊
Just remember we are lucky to have known what has gone wrong with our hearts. A friend of a friend, healthy and fit died whilst on vacation aged 54. No signs, no history! So I always remind myself that we have been chosen to carry just that little longer on earth so lets keep it positive. Best wishes -:))
Did you experience pain in the chest when new muscle was growing in your heart ? How did the doctors / cardiologists find out and were convinced that's what's happening ?
That must be an uncommon diagnosis at your age. Looking back now, do you have a clear picture of the time course of your illness, and the symptoms you had? What do you feel were the red flags your GP should have spotted?
A huge amount of weight loss. Im not the biggest guy in the world as it is ! So was all bone.
Was very pale in colour and was just very fatigued all of the time.
This happened over the course of about 6 months. I was back and fourth to the docs. They Done countless amount of blood tests, stool samples etc and they just couldn’t find the cause until one day my spleen was in agony and so I had to go home from work. I thought I could sleep it off. I woke up still in agony so I contacted 111, they organised a out of hours appointment and I then had further tests at the hospital. They still couldn’t pin point what was causing this, the doctor said I can either go home or put myself into hospital . So I put myself into hospital and the first thing the consultant checked was my heart. 6 months of illness and not one GP checked my heart .
I had a murmur. Within a week I was operated on. My heart was enlarged and they said i wouldn’t have lasted another month. My heart would have failed.
I am so thankful to that consultant as I would not be here today to write this message to you guys
This sounds like “subacute bacterial endocarditis”. Apparently the average GP is likely to see only one case every 8-10 years, so it’s not a surprise your GP missed the diagnosis. I guess there would not be many GPs who would spot this. Most times the diagnosis is made in hospital, whilst a patient is being investigated for the symptoms you describe. A heart murmur and a history of intermittent fever give it away.
I think looking back, it sounds like the GPs were reasonably diligent but will wish they had referred you at an early stage. Excessive weight loss and anaemia at your age are unusual.
I was well heard of in the hospital and was regarded “the special one” 😂 i had a lot of student consultants in with me so hopefully this will help them in their careers I’m just very thankful to be here 😊
Thank you very much for your post, so thoughtful and so much I can relate to. I too had endocarditis followed by urgent valve replacement. My story is much more straightforward . After ten days feeling iller and iller with swinging high temperatures, night sweats and general flu like symptoms I was persuaded to see the GP. The doctor did not know me and said that I looked too well for the symptoms I was describing but she very carefully examined and listened to my lungs and heart and found a murmur which had never been heard before. She dispatched me to hospital that afternoon where I stayed for nine weeks . Over the next 48hrs I was diagnosed with endocarditis and aortic stenosis . I am older than you (56 at the time) never been ill and generally slim and quite fit. As you say the shock was awful and I can really relate to the pysologicsl effects. I can related to the panic attacks and insomnia, isn't everything worse in the wee dark hours. As you say time and routine help as does exercise. I need to set aside time everyday for either a walk or gym session. Being outside helps so much even on a wet Scottish winters day.
Two years on and like you I treasure each day and work hard to keep well physically and psychologically.
Look after yourself and keep strong. Must stop as time to go to work.
Hi Evans. What a lovely thoughtful person you are. As Nathan has said you are an inspiration. This forum is great and needs to be promoted as you say not everyone knows about it. I certainly didn’t when I was ill but have benefitted from it since and hopefully supported others. Glad that you’re recovered and brilliant to reach out to others. I think both patients and health care practitioners underestimate the psychological issues associated with heart disease and not everyone gets the support they need. So thank you for sharing. Take care and stay positive. Zena x
I don't do actually exercises as at the moment I am still working 40hours a week in a Garden Centre this is very physical work contrary to popular belief it's not just playing with plants 😂
I am retiring in March so will definitely need to do some exercise what would you suggest bearing in mind I'm 65 ?
Well that’s better than sitting at a desk in terms of being active 👍
You don’t need to exercise like you are training for a marathon but I would start off just going for walks at a relatively fast pace to raise your heart rate even if it’s just around the block a couple of times. As mentioned exercise releases seratonin and this is the chemical in your brain that makes you happy.
I like to take a trip to the woods and just have a nice walk on my own from time to time as we have fantastic views. If u live by the seaside maybe just walk along the front . It’s not exercise if you enjoy the view
Try to find something you enjoy as then it’s much easier to keep doing it and it will become part of a routine which as mentioned also helps your mental state
it doesn’t need to be that long either. Start off with just 10 minutes then gradullay build it up. U will soon feel the benefits. Remember you aren’t competing with anyone except yourself to give you a better quality of life.
P.s I don’t know your lifestyle but alcohol is a form of depressant and will increase anxiety. I have cut out alcohol completely in order to deal with my circumstances
• in reply to
I imagine that Gardening for exercise is good for the age above 65, same as myself. When I have been working in my home garden, I thought plants do show the heart and arteries, when I studied the roots, uprooted some and re-grown them for regeneration. I saw the growth of red and black berries plant which shot up next to the fish pond. It was clinging and growing over the fence, walls, windows, climbing up the roof. It required a bit of exercise every fortnight to trim, keep away the thorns from biting the children, plucking the berries from dense thorny branches, drive the bees, butterflies and birds as they all loved this interactive plant. Other plants I did exercise with these very itchy and thorny green plants growing everywhere on the ground of the garden, cutting them and then growing other friendly plants of flowers and vegetables. I found that working in my garden with the plants involved lot of exercise of the heart and lungs, if not so much the hard-work of the hands and legs. Working with the fingers and closeness of the chest affects the heart directly. I would love to spend long time working with plants and grass in longer botanical gardens, pastures, farm gardens and home gardens, which would also give opportunity to walk around for hours, learn sciences about plants biology, discover medicinal herbs and good fragrances
Well done helping yourself get through the anxiety...Consider changing your Doctor too.
Yes Evans I am grateful for having it done & I try to live life to the full, but now it's @ a slower pace than after the operation due to other problems & ones that have always been there
I didn't understand Shocked until I was older & still don't fully understand now as it has never been fully explained, I just get a letter saying what's been found & that they'll see me again as I'm having to go for the rest of my life for checkups
That’s certainly understandable. but at least you can have the piece of mind that they are checking you year on year and they are always there for you.
I still don’t know to this day how my heart valve got infected so this concerns me also but you just have to try not let it effect your quality of life and change the way you want to live 💪
I guess you can either let the anxiety consume you or you need to consume your anxiety 💪👊
Hi , I have never commented before but I’m on here because my husband has heart problems. I have had anxiety in the past and I know how awful it is . So I just wanted to say how lovely it is of you to offer a listening ear to someone else suffering. It can make such a difference and I wish more men would open up about these things . Well done you !
Its sad that at such a young age you had suffered and gone through lot of hardship, unbearable to the heart. I have been disappointed for GPs as well. I felt they do nothing but just listen to what a patient says, then they think something else other than what a patient is suffering. I complained about heart burn and he just joked saying a chest pipe is blocked, it will go away. I took Gaviscone as he recommended and saw him again after a month as nothing changed. The inflammation continued for years, I was suffering and couldn't tell anyone. Lately I had major heart attack and the cardiologist report the heart has been damaged a lot, with scars, and that suggests long period of inflammation has touched it. I am concerned that so many young people suffer from heart burn, please be aware and get the heart to be scanned and checked up thoroughly, before its too late, relying on the tongue of the GP
Hi Malcolm
Anxiety is a horrible thing to cope with and I have always suffered from it.
I suspect that it has been a factor in my diagnosis of Heart failure .
I had no idea that anything was wrong with my heart , I have always thought of myself as fit and healthy . I have at first found it really hard to come to terms with and I sometimes wish I had never found out !!
But I have tried to turn it round in my head , I have a beautiful family who love me and I have so much love to give them all .
Worrying about the future is a waste of precious time .I should be thankful that the Doctors have me on their books now and all I can do is trust them .
Try not to worry, everyone gets anxious some more than others try to think of all the good things in your life and be thankful that you are still here.
Live each day and take pleasure in the simple things, we have all forgotten how we were when we were young no anxiety we lived in the now.
This site is full of wonderful people who really care about others I am sure that you will get lots of help from them .
It is nice to read your story. Your story sounds very similar to my own.
I was diagnosed with Endocarditis 4 years ago when I was 20 years old. It left me with a damaged mitral valve with 'severe regurgitation'. My consultant did not want to operate and therefore I'm kept a close eye on with 6 monthly check ups and scans, but I know I will need a valve replacement or repair in the near future.
I can relate with the anxiety. I had many panic attacks when I was first diagnosed - I didn't know anything about the heart, and in the beginning, I too was afraid to go to sleep incase my heart stopped or I thought I was going to have a heart attack! When I finally came home from hospital, everything felt so surreal and I felt so anxious to go anywhere alone.
Similar to you, I lost a lot of weight and was basically just bone when I was very ill. Regular exercise by going to the gym has been my escape which has helped more than I realise!
I know I've got to overcome another hurdle by having heart surgery, but we are both lucky to be alive & as you say, it makes you realise how life is so precious.
I just wanted to say, I’m so happy to hear that you have come through that terrible event.. and things are getting better for you..even though you still get anxious..your positive message is good to read..you were so young..to have open heart surgery.
I was told about this site by a friend, it has helped me to cope a little better..as everyone on here has or is with someone going through similar things..I myself had my HA last April..with one stent fitted..I have good days and bad..Any twinge and I worry..and find it hard to stop thinking about the ‘what ifs’ especially at night...and what happened to me shades in comparison to what happened to you..
I do try to think possitively..we have survived. x
Beautiful story and thank you for sharing. since going to the gym and training my chest (at first I was definitely worried to do this) I now think those twinges are just from the gym. (This helps me mentally massively )
I get aches in my chest every now and again but this is just from the bones and muscles all healing still.
It’s definately mind over matter when it comes to surgery and how you move forward 💪
Thankyou for sharing your story. It is hard to imagine shuffling all the cards you were dealt at such a young age. You are a real survivor and a smart young man to see the bennefit of protecting the value of your life that was given back to you. You are an inspiration and best wishes for a long and happy life💜
Yes, mind over matter defiantly..I do keep moving..and do on average 12 to 15000 steps a day..and I’m trying to get back into my swimming..I’ve used the spray they give you for the angina and it does help..maybe I might be pushing a little to hard sometimes..I suppose I shouldn’t be too hard on myself..
In a similar position as yourself I was 32 when I need a valve replacement and need it replacing again at 45 due to endocarditis. Now 56 and still going strong, the warfarin can be a problem but just watch the vitamin K products. You can have alcohol but always in moderation. Between 32 and 45 I was a keen runner and did marathons. Hope this helps
Hi. I’m just wondering how you are doing now. I hope you don’t mind me contacting you. I hope you have been well as I know that your post has been on here a while.
I’ve just recovered from endocarditis and having my mitral valve replacement redone as a result. I’m wondering if anyone ever spoke to you about the risk of endocarditis reoccurring. I’m terrified of catching it again but the doctors tend to avoid giving me a straight answer. Any info you can give me would be appreciated.
Sorry to say but yes you are at a higher risk of getting endocarditis again but if you make sure you clean any cuts and have good dental hygiene then you should be fine. Remember endocarditis is already a extremely rare condition so to get it twice would just be really bad luck.
Don't let it concern you and enjoy your new lease of life that has been given to you.
Hi. Thanks for replying. I’m so pleased that you are well. It’s very reassuring. I’m hyper vigilant about my health at the moment and I hope that in time I’ll chill out a bit. It feels a bit like having ptsd. My story sounds similar to yours except I’m 20 years older. I feel very encouraged by how positive you are.
I recently changed careers from a cushty office job to being self employed as a window cleaner. Yes a really physical job with no safety net of sick pay or life insurance. Crazy I know.
😂
But I know I'm fitter now than what I ever have been due to looking after my body and listening to it. So endocarditis can go f**k itself 😂
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