Hi everyone, I'm hoping for some words of reassurance, and also to ask if anyone's been through the same thing.
I had endocarditis this year and had an artificial replacement aortic valve fitted through open heart surgery, partly because they discovered I was born with a bicuspid one (which had made me susceptible to endocarditis), and partly because the endocarditis had damaged the valve so much.
I'm only 4.5 months post open heart surgery, and I woke up in the night freezing cold and it took me ages to get warm. I finally got back to sleep at 6 am after taking a sleeping pill, and woke up at 12 noon in a sweat. Once I'd got some dry clothes on I noticed my whole body aching. I've taken some strong co-codamol that I had left over from a prescription, but I'm still aching. The symptoms feel like some of the symptoms I had when sick with endo, but not as bad; it could be flu or a virus, but I'm worried it could be the start of another endo episode.
I know I need to be vigilant, as I'm now in two groups of people that are vulnerable to the disease - people who've had it before and people with replacement valves. Unless I'm better, I'm planning to go to the GP in the morning - they are brilliant and always have same-day appointments available. Is this the right thing to do? I certainly don't want to be seen as a patient who turns up with every little thing, and if it's not endocarditis this time, I worry that if it did hit me again in the future, I'd be taken less seriously if I'd been in with prior false alarms.
I had a terrible experience getting taken seriously by my previous GP, who nearly killed me by leaving me suffering horribly with endo for 7 weeks, claiming that I was just an anxious patient with a virus. I've changed to a far better doctors' surgery now, but I don't know whether to sit it out a few more days so I don't get a bad reputation with them, or to listen to my body and take precautions by getting checked asap.
If anyone's been in this position, what happens? Do they take bloods for cultures at the GP to check for infections and let you know what's happening while you're still home, or do they send you straight to hospital?
Thanks for reading xx
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Do you have a fever? I would just go to the md. Don't worry about what they think of you. Your health comes first. You tell them what's happening and it's their job to figure it out.
Hi Dolphin, I'm sure you're right. They know all about what happened at my previous GPs, and said they were shocked and that I should always go to them with any concerns and not to let my previous experience put me off seeking help.
I don't know whether I have a fever or not. We have a home thermometer but I think the battery's low, and it said my temperature was only 35 degrees, but there's no way I'd be conscious if my temperature was that low, so I'm ignoring it. I am getting a bit hot and cold but not shaking and sweating like I was before.
Thanks for the reassurance. I'll definitely contact the GP in the morning unless I'm feeling better x
Morning, Dolphin, it really helped to have such lovely replies last night, thank you
I've woken up this morning feeling so much better! The symptoms have gone, and I think I must have been fighting off a bug or even just overtired. I hope you're well x
I completely agree with Dolphin 14, don't worry bout what anyone thinks, your health is far more important. When my husband was first poorly we were calling an ambulance practically every other week for bout 6 months! They do take blood at our surgery to test for infection but it goes on to the hospital to be tested so can take a few days, I think you should ring the helpline number for advice.
Hi Lezzers, that's a great idea about the helpline, I didn't think of that. Thanks so much for replying. It really helped to have such lovely replies last night
I've just woken up after a really good sleep - no sweats! - and I'm actually better! They symptoms have gone. I think I must have been fighting off a cold or perhaps just overtired. What a relief. Thanks X
I think we have talked before, I too had endocarditis , OHS and valve replacement. I can really empathize with what you are going through. Like you I was told I must take any temperatures seriously.
I think that you should definitely seek an appointment tomorrow and get checked. It would be worth mentioning that you have been having night sweats as well as temperatures. Hopefully you will see someone helpful who with understand your symptoms and rightful anxiety considering your history.
Hi Mary Janet, yes, I remember we talked before, thank you for your lovely message I hope you're well.
I'm feeling completely better this morning. I think I either overdid it by going to a conference (about congenital heart disease) at the weekend, including long train journeys and an overnight stay, and then spending all day Sunday cleaning and tidying, as our letting agent wanted to do an inspection, which I ended up cancelling because I felt so grotty. Or I might have picked up a bug at the conference/train, as I haven't been around large numbers of people for years, and then fought it off.
If I get the symptoms again this week, I'll definitely get to the doctor straight away, but I think I'm ok. Thanks Xx
Hi, go to your doctor today and demand a blood test. One of the early symptoms of sepsis is a low temperature and low blood pressure, l had this nearly 3 years ago and was close to death, it led to septic shock and severe endocarditis which destroyed my aortic valve. l now have a mechanical valve replacement and pacemaker. Are you on warfarin? that can make you feel cold it thins the blood passing through your valve. Night sweats can be your bodies way of warming you up. Any sane doctor will take you seriously with your history. Please take care and let us know how you are. Sue.
Hi Sue, thanks for your message I'm feeling completely better today, the symptoms have gone, and I think I was either overtired or fighting off a bug. I'll definitely go to the doc if they come back, though.
Sorry to hear you went through such hell with your illness. It's such a horrible thing to suffer, and I've a lot of sympathy for anyone who's been through it. I hope you're feeling well now that it's been treated.
Yes, I think I've been close to sepsis too, at least it was my initial diagnosis before they discovered the endo, and I was close to death by the time they admitted me to hospital and started treatment, but I felt 100 times more ill than yesterday! I don't trust that thermometer, I've noticed it says the battery's low now and it was only a cheap thing off Amazon.
Yes, I'm on warfarin because I have a mechanical valve too. I've avoided reading the side-effects though, so far, as I've no choice but to remain on it for life, but I really should read them now; I didn't know it could make you feel cold. Thanks, I'll make sure I read them now.
It was only a mild night sweat I had yesterday, nothing like the ones I had with endo, and I had a really good sleep last night with no sweating.
Hi Cathy, thanks for your reply l'm so glad you feel better!!! l think we have both been to hell and back but we are survivors many are not. l am very paranoid about the symptoms of sepsis, mine was only diagnosed at the 11th hour when l was on life support for a week. My Hero Consultant heart surgeon saved my life twice as the first heart valve failed after 5 weeks. He had a wonderful doctor in the lab who after trying 9 different antibiotics found the one to completely destroy all my infections. Onwards and upwards honey, go and buy new shoes, eat chocolate, and drink wine. Take care, Sue.
Morning, Jo, Thanks so much for replying. It really helped to have such lovely replies last night
I've just woken up after a really good sleep, and I'm actually ok! The symptoms have gone. I think I must have been fighting off a bug, or even just overtired. What a relief.
It sounds as though you had some trouble getting taken seriously and treated for your heart condition too, and I'm sorry to hear that. Did they tell you it was anxiety, too? Xx
Glad to hear you feel better this morning. I had OHS and a new valve last year and on two occasions in the following year I had symptoms similar to yours so went to the GP next day “just incase”. With your history I wouldn’t think twice about getting checked out and if you have a decent doctor they will feel the same. They actually do want to look after us
So glad you are feeling much better. It's not a good idea to wait to see a GP if you feel awful. Hopefully you won't have a repeat episode. If you do, call the doc straight away.
Hi I had endocarditis this time last year and had OHS and AVR in December. I have had a few problems after my op and at times have felt poorly as you describe, I went straight to my doctor and they are o my too happy to help, even if it's nothing they are happy enough to let you know and put your mind at rest.
I'm late to the party, and glad to read you're feeling much better today - but I still think you need to ring the surgery and report what you went through last night. Better safe than sorry, you should be checked even though today you're better as endo and other carditis' conditions like to play a bit of hide and seek.
One of the symptoms I was told to be especially alert to was 'swinging' fever (also known as intermittent or 'comes and goes') and other 'come and go' symptoms. Ignoring those intermittent symptoms last March got me too close to cardiac tamponade and I was told to never ignore that sort of thing again.
HiSunnie2day , I m interested in your comments regarding intermittent fevers and other symptoms. This week ive had i episode of a slight fever 37.4, some shortness of breath and a night sweat poor appetite but inbetween ive been back to whats relatively normal for me and managed to work. I had an AVR 3 yrs ago. Do you think i should see my Dr? Its been a case of am i / arent i becoming unwell all week !
I'm the patient, not the 8+years trained medic so can only say - call your medical team and report what you're experiencing. They know your case, treatment including medications, and are the only people you should trust to advise you.
If I were experiencing what you are, I'd be writing down the 'when/where/how long and strong' then reporting it to the GP - mine is apparently on the fast-track line to the cardiologist and can get me in fast if needed. Yours is hopefully the same. Please update and let us know how you get on.
With lots of positive help 😊 my dad had a bi cuspid valve replaced with a metal valve in 1983 he had it for over 32 years he also contracted endocarditis
How fantastic is that 32 years he followed all the guidelines he was given and had 2 stents fitted during that time too and 3 hip replacements
So I Guess the original Bionic Man
Just putting this out there as a positive for all
I had a HA in March and Stent fitted also 👍🏴
Hi there. I was found to have a damaged aortic valve by chance whilst being treated for suspected endocarditis. Since having the valve replaced i am vigilant about the risk of developing endocarditis again and i can relate to your anxiety about it and also about being seen as an over anxious patient. Having had to be admitted in heart failure whilst waiting for my op im also nervous about developing that again and had a hospital admission 2 yrs ago where a dr scathingly told me that i “ wasnt ill enough to be in hospital”. I dont think you can help worrying when you have had a life threatening illness and the attitude of some health professionals dosnt help, in fact it makes us less likely to seek medical advice when we really should.Im the worst one for that ! But we need to do it and not feel we are wasting peoples time. im Pleased that you are feeling better and it wasnt endocarditis x
I did go to the GP in the end, as I discovered a boil (won't tell you where, lol!) and they put me on oral antibiotics and took some blood. The blood test was clear and the antibiotics are making the boil go down. Both doctors I saw were incredibly kind and reassuring. I think I might even be flagged as a priority case, because as soon as the receptionist pulled up my details she said to come along in an hour's time. It was my previous GPs that were so unhelpful before, and I've changed surgery since it happened.
Thank you, everyone, for all your support and encouragement, I'm so grateful to have had so many lovely and helpful replies here, this is such a lovely supportive group xx
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Hi, I'm Katie, and i had open heart surgery when i was 15, as i was born with double outlet right ventricle
Body piercing and tattoos - congenital heart disease (bicuspid valve)
Valve Replacement 
Post Surgery Sadness 
