Hello I'm a new member and would like to know if anyone has been through endocarditis with sepsis as I did 3 years ago.Once the treatment was completed I became very ill in the following 10 days and was admitted to hospital with a leaking aortic valve.
Seven days later I had a PEA cardiac arrest and salvage operation with triple bypass and new aortic valve.
Has anyone had a similar experience, as I have been so blessed to have survived.
Hello tmax500, I also contracted endocarditis and Sepsis in March 2024. I had flu-like symptoms, hot and cold sweats, sudden weight loss and a constant cough. I too became very ill within the next 10 days and was admitted into Southport hospital and immediately given an antibiotics through IV drip. Two weeks later I was transferred to Liverpool Heart and Chest Hospital for an emergency Aortic valve replacement. I am 8 months post OHS and recovery is going really well. We both know that we are one of the lucky ones. Jonny
Hi Zipper 73, thank you for your reply it's good to hear of other peoples experiences.My PEA cardiac arrest meant I was clinically dead and somehow they managed to revive me 3 times. My wife was contacted and told it would be kinder to let me go but she insisted they try to save me and 3 years on I'm still here.
It has left me with with acute kidney damage and my heart can't pump blood to the extremities but all that matters is I still have a life thanks to the surgeon and staff at Blackpool Victoria hospital.
I had ineffetive endocarditis last year. Had 6 weeks of antibiotics and then replacement mechanical mitral valve. We consider ourselves fortunate as hear of people not surviving. Kevin Campbell, ex-footballer died this year with ineffetive endocarditis. In my experience, suspicion and diagnosis were missed until advanced stage and was confirmed with blood culture test.
Hi Samsoncat, yes we are very fortunate and I believe it's vital that medical professionals have more awareness of endocarditis.
I agree too. I unfortunately was misdiagnosed aswell at first. With my white blood cell count being sky high the medical professionals couldn't understand why. So I was referred to a None-Specific Rapid Diagnosis Unit, they we're original looking for signs of Cancer. Which thank God was not found. But what they did find was my damaged Aortic heart valve caused by the ineffective endocarditis. I am so glad we are all still here to tell our stories. All the very best to all of you in your health and recovery. Take care.
Jonny
hi. I had sepsis followed by endocarditis a couple of years ago following a mitral valve replacement. The endocarditis diagnosis was missed for months (despite repeated GP and A&E visits) and by the time I was admitted to hospital I was at deaths door. I was in hospital for 2 months on IV antibiotics and diagnosed with endocarditis about 3 weeks after my admission. Looking back I really don't understand how they missed the diagnosis but it nearly cost me my life. I can't believe that after my first open heart surgery they never considered endocarditis. After 6 weeks hospitalisation I had a further mitral valve replacement followed by another 2 weeks of antibiotic treatment. I've been left with heart failure from the endocarditis but I'm still here and able to live a full life. The psychological impact of these events has been very difficult to overcome and has really shaken my faith in some NHS staff although I do owe my life to my fantastic cardio thoracic surgeon who fought hard to save my life. I'm 53.
Hi annon2023, I had a cardiologist consultant who thought it was ok for me to have endocarditis, sepsis and a leaking aortic valve as well as a high pulse rate.He wanted to discharge me saying to me that I was OK.
Needless to say I no longer have him as my consultant!!
If he is reading this I bet he will know I'm talking about him.
I have very little faith in some doctors and I believe I'm written off at times because of my medical history as I have been through 2 primary cancers along with lots of other things.
Like you I live with heart failure and it puts a strain on our mental wellbeing.
I wish you well for the future and the challenges ahead.
Thank you for telling your story, I'm finding it a great help speaking to others who are going through similar health issues.
Hi. Thank you for replying. I think I was genuinely unlucky but endocarditis is a killer. From reading this forum it seems that it's not as rare as they make out but I cling on to the hope that lightning doesn't strike the same spot twice. Your first cardiologist sounds like an idiot. I'm so pleased that you found someone else and I hope that your care is much better now and that you are well.
I have had endocarditis 2 times. Once in 2001( got it from a hidden abscess). I then went to Cleveland Clinic and had my aortic valve repaired. (very rare at that time).Then in 2022 I got endocarditis again (this time from a epidural for sciatic pain). They wanted to change my aortic valve because of the vegetation on it. My doctor who had assisted in the first surgery 20 years before suggested they were looking at scar tissue. We took the 6 weeks of antibiotics and then did scans that showed no changes in the valve. You should generally take antibiotics before any intrusion into your body that can get into the bloodstream. I recognized that I had endocarditis the second time time and got help right away by telling them to do a culture and verify it. I them went immediately into the hospital. Time means the difference between how much damage the heart gets from the infection. Many do die from endocarditis because of it not being diagnosed in a timely manner. You need an expert cardiologist and surgeon.
Inspiris Aortic Valve
ENDOCARDITIS Treatment FLUCLOXACILIN
Aortic valve replacement 
Worsening Leaky Heart Valves.
Endocarditis Round 2
