Risk of endocarditis reoccurring - British Heart Fou...

British Heart Foundation

36,028 members23,196 posts

Risk of endocarditis reoccurring

Anon2023 profile image

I’m new to this forum and posting things so please bear with me. The last 6 months have been horrendous. Last April I saw a cardiologist because I was experiencing palpitations. I’m 50 and honestly thought it was the menopause and I had no history of heart problems so I was shocked when I was told that I needed urgent ohs for severe mitral valve regurgitation. I had my first op in September 21. In October 21 I was hospitalised with sepsis and I also contracted c diff. I’m November I had a major stroke but was lucky enough to have a thrombectomy which saved me. In December I was admitted to hospital with a fever and found to have endocarditis. They suspect I had it for months. I had 3 strains of bacteria and no idea how I caught them although they are often contracted in hospital. I had a replacement mitral valve op in January. The surgeon cleared the infection from my heart and in total I had 12 weeks of antibiotics before & after surgery. I’ve been re admitted to hospital twice since with afib. I’ve had cardioversion and I’m waiting for ablation.

My level of health anxiety is through the roof. The endocarditis nearly killed me and my surgeon said it caused the stroke. Nobody can tell me what the risk of reoccurrence might be and I am terrified. I feel like I am in limbo and feel frightened of the future.

16 Replies
Milkfairy profile image
MilkfairyHeart Star

Hello Anon2023,

Welcome to the forum.

I am so sorry that you have had such a tough time.

Many of us, since we have become heart patients live with uncertainty.

It's not easy. Sometimes there just isn't an answer.

I felt like a startled rabbit in the head lights, when I was rushed into hospital 10 years ago.

It took awhile for me to get a diagnosis and even longer to feel calmer and to be able to cope with the anxiety.

Have you asked your GP to refer you for some further support?

IAPT can help.

nhs.uk/mental-health/talkin...

Have you been referred to Cardiac

Rehab? Some services offer counselling.

There is also the BHF helpline where you can talk to one of the Cardiac nurses.

Be kind to yourself. Learning to pace your activities and rest and more rest are important.

Perhaps start by taking each day as it comes.

One of our long standing members has lived with pericarditis for many years.

Sunnie2day is having a sabbatical from the forum but hopefully she'll see my tag and respond to your post.

I am sure other forum members who have experience of living with pericarditis, atrial fibrillation, ablation and stroke will be along too, to offer you yet more support.

Anon2023 profile image
Anon2023 in reply to Milkfairy

Thank you so much for your reply. It means a lot. The cardio nurse has referred me to the psychologist attached to their service. Not sure what the waiting lists are like but it’s something. I really hope that it works. It’s exhausting living in a state of constant anxiety.

Kristin1812 profile image
Kristin1812Heart Star

You have been through such a lot and one thing after another. Repeatedly. I found the recurrence of my heart issues, and the uncertainty, really hard to deal with psychologically. It can be like PTSD. For me it was more like helplessness. Therapy really helped. Had you thought of trying that?

Anon2023 profile image
Anon2023 in reply to Kristin1812

Hi. Thanks for your reply. I appreciate it. I’m on the waiting list for therapy and hopefully it won’t be too long. I think it is like ptsd. It’s the uncertainty that is exhausting. My cardiologist told me to try and take a “devil may care” approach to it but I’ve struggled. I feel a bit like a time bomb.

Kristin1812 profile image
Kristin1812Heart Star in reply to Anon2023

Sounds good. I hope it really helps. You’ve been through so much.

So sorry to hear about your health problems. I am new to this site too. I am sure you will get the same help that I have received from the lovely and knowledgeable people who post here. Good luck x

Anon2023 profile image
Anon2023 in reply to Etblue

Hi. Thanks for taking the time to reply. It means a lot. there are some incredibly kind and knowledgeable people on this forum.

You have had a very tough rough ride. Lots of great advice on here

Anon2023 profile image
Anon2023 in reply to Chipmonks

Hi. Thank you. It’s been hard going but fingers crossed that it’ll get better.

Hello Anon I really just wanted to say I felt so much for you when reading your post I really hope things improve for you very soon take care sending hugs xx

Hi. Thank you so much. I’m touched that people have taken the time to reply.

Hi Anon I don't know where you got your operation but it sounds horrendous! You should be referred to a specialist Cardiologist that deals specifically with endocarditis such as Professor Bernard Prendergast (Cleveland Clinic, London and StThomas's Hospital). You may have to take preventative antibiotics and have weekly GP blood tests to analyse you CRP levels. If these are high you should then have "blood culture" tests straight away as the earlier you get this horrid disease (as rare as it is) you have more chance of defeating it with antibiotics. Hopefully you are now on the road to recovery as you have been through alot. All the very best and hope you get the specialist help you need.

Hi thanks for your reply. I’m in the north east and but would gladly travel to see a specialist. I don’t think my doctor would refer me though as i had surgery in January to clear the endocarditis and then antibiotics afterwards. I thought I would have blood tests after the antibiotics ended to make sure the infection was gone completely but my gp doesn’t think I need them. All I’ve had is blood tests as a result of the afib admissions to a&e and my crp was 17 which is much better than the 440 before surgery. Nobody has completed blood cultures and I’ve not heard from the cardiologist. In essence I’ve been told that if I feel unwell then contact my gp or go to a&e if I have endocarditis symptoms. I feel that I’ve been left to my own devices really and would welcome any suggestions about how to convince my gp to refer me to a specialist.

I think you need to tell him not ask him, or you could report your gp to the gmc. You should have regular blood tests also. Maybe change your gp.

I think you are right, I need to be more assertive with health professionals. I’ve rang the gp and have blood tests now booked for Friday. Fingers crossed that all is well. Thanks for your help.

Excellent, well done. Request FBC, CRP, ESR biweekly blood tests. Google these so you understand them. These all will ensure you are well. If any is high you need blood cultures at the hospital.😀

You may also like...