Endocarditis awareness

[heatherwarde21]

Hello,

I’ve recently lost a friend to endocarditis and am wanting to spread the word of the symptoms to hopefully prevent deaths

[MichaelJH Heart Star]

Hello and welcome to the forum! Perhaps you could say something more as I suspect many are unaware of the symptoms.

I lost one of my best friends of over forty years to sepsis about five years ago. He collapsed on a Saturday, was made comfortable for two days in a women's ward, was diagnosed with sepsis on the Monday lunchtime and was dead by the evening. Many more medical staff are aware of the symptoms but unfortunately many are not!

[heatherwarde21]

My friend died 2 weeks ago with endocarditis

3 weeks prior to that she was off work with suspected pirfomis syndrome (pain in her butt) she was on some heavy painkillers from GP and had seen a physiotherapist

In that time she started to feel generally unwell, mild flulike symptoms.

The day before she died she was admitted to hospital with suspected eye infection, her eye was swollen and bloodshot and she lost sight in it.

She was taken to intensive care through the night and was proclaimed dead in the morning.

Endocarditis is an infection of the heart lining. My friend had seen a number of healthcare professionals over the three week period but this deadly disease had not been diagnosed.

[kefalonia1]

So sorry to hear about your friend. Sepsis and endocarditis are mates unfortunately and like to work together l have been told. l had severe sepsis, septic shock and severe endocarditis which led to two mechanical aortic valve replacements 5 weeks apart as the first one failed, pacemaker and drainage of my heart for a blood clot and infection also a litre of sepsis was drained from my chest wall. l was close to death twice so l know some of the symptoms. l think the biggest warning is the confusion, you talk slurred rubbish and don't wee hardly at all (the sepsis trust has all the symptoms) These deadly infections are hard to detect l thought it was a bad tummy bug but when the ambulance rushed me to hospital l was minutes from death but thankfully diagnosed and had emergency operations followed by a week in an induced coma on life support, but l spent 3 months in hospital fighting for survival afterwards. ALWAYS ask "could it be sepsis?" and spread the word because sepsis often leads to endocarditis. l hope l have helped. Take care, Sue.

[heatherwarde21 in reply to kefalonia1]

You have thanks Sue, I’m just wondering if I can actively raise an awareness of these deadly diseases I know BHF fundraise but I want to specifically get the information out about the symptoms of endocarditis etc xx

[kefalonia1 in reply to heatherwarde21]

Please get in touch with the Sepsis Trust, l have spoken to them in the past and they are very aware of how deadly infective endocarditis can be. They also will help you by talking through your loss and are always looking for volunteers. Although it was not so in my case, loads of people get sepsis and endocarditis from a simple scratch, blister or from dental treatments and gum disease. Without sounding paranoid, handling money and not washing or wiping your hands with gel or antibac afterwards is so dangerous its got thousands of other peoples germs on it. CT scans and a Tsunami of lV antibiotics is the only way forward but l worry that because of funding it is not done quick enough despite best efforts. l was very fortunate to be saved so quickly by the marvellous team at Bristol Royal lnfirmary and my hero Consultant heart surgeon Mr Bryan who came to work on his day off 01/01/2017 for my emergency operations. A lot of life saving goes on by amazing people behind the scenes in labs who detect which infection is in your body and find the appropriate antibiotics that will save you in time. Please let me know how you get on, your friend would be proud of you. Take care, Sue xxx

[heatherwarde21 in reply to kefalonia1]

Thank you and I will xx

[kefalonia1]

ps. its UK SEPSIS TRUST. X

[Mary_Janet]

Good afternoon

I too am an endocarditis survivor. After ten days of flu like symptoms and night sweats , treating myself with rest, drinking plenty and paracetamol, I was eventually persuaded to see a GP . I thought that I had bad flu that I could treat myself. I saw an emergency GP who I did not know, she thought I looked well considering what I was describing but she was very careful and listened to my chest and heard a heart murmur which was new. She got advice from the hospitalmedical team and I was admitted that evening (i drove myself there).

The infection entered my body when I lost a filling which was out for 24hrs. Over my first weekend in hospital I was diagnosed with endocarditis and a previously undiagnosed bicuspud valve. I was in hospital for nine weeks which included heart surgery and valve replacement. I was very seriously ill and lucky to be alive.

18months on I am well but my stamina is not what it was and after two shifts at work I am floored.

I take all the recommended precautions to prevent further endocarditis but life in dread of further infection. I would be interested in hearing of any work being done to highlight this awful illness. Many people (including doctors) have told me how lucky I am that the GP listened to my heart !

Best wishes

Mary