Endocarditis - what happened to me...

Heart health and blood vessels
1

I am certainly not a hypochondriac and don't go around worrying about health issues. I have had endocarditis twice though (1997 and 2003) so I think its okay for me to check websites for information every so often.

As I have had subacute endocarditis twice I thought I would share my experience with other who may have this condition and are maybe worried.

Way back in 1997 (I was 44 then) I gradually started to go off my food and generally have a lack of energy. I would get home from work and just want to lay down and rest. This went on for maybe 3 weeks or so. I developed night sweats and was feeling more and more tired.

After a lot of nagging my wife marched me to the doctors who sent me off for a blood test. I read on the form she gave me the words 'endocarditis risk'. I had no idea what this was at the time. Only the next day I had just gone to bed after a long night shift at work when the phone rang. It was the doctors surgery ringing to say that I had to go to hospital. Much to my surprise I would apparently have to stay in too!

I soon found myself on a ward for 5 weeks having regular doses of antibiotics, initially 4 times a day reducing to twice a day. Once I starte feeling better I was allowed to go home for a few hours a day every so often, but not allowed to stay away overnight.

I suppose I would say my main sympton is summed up in one work - fatigue. I would say this is different to just tiredness - I felt I had no energy or strength and mostly just wanted to doze.

During this spell in hospital I was treated with gentamicin and penicillin. After about 3 weeks I developed an allergy to penicillin - two varieties of rash and very high temperature. This made me feel worse and I had a realy problem eating anything and walking short distances was a problem - no chance of a trip home.

Once the doctors worked out that it was the pencicillin that was causing the problem they changed me to teikoplanin (?spelling). after a week or so I was feeling much better and was allowed home just before Christmas and was back at work after a total of 8 weeks off.

The was only episode one. I had another brush with endocarditis at the end of 2003. I noticed I was getting feverish and a feeling of fatigue. No hesitation in going to the doctors this time. I was in hospital for 4 weeks but needed longer to recover having nearly 4 months off work.

For background I should mention that it was found that I had a heart murmour when I was 21. I have never had any symptoms of this. Apparently a heart murmour makes you more likely to get endocarditis.

If you are worried about endocarditis you can get in touch if you like. I am now compeletely fit and well.

2

Hi Paul,

My brother (also Paul coincidentally) has recently been dianosed with endocarditis. He was feeling a bit run down and then developed flu symptoms, which eventually turned into gastric flu. He's 45 and lives alone and rarely visits a doctor. Anyway on 17th December I went to visit him and called an ambulance as he was in a lot of pain and practically incoherent. Early the next morning in hospital they intubated him as he wasn't getting enough oxygen and he has been in a medically induced coma ever since. Endocarditis was diagnosed after about four days along with multiple organ failure. He was on support for heart, lungs, kidneys & liver initially and we nearly lost him on Boxing Day. However on 27th December he made an amazing turn around and within 48 hours was off the kidney machine, off the medication for his blood pressure and breathing on his own. I thought we had turned the corner, then yesterday he had a relapse and was back on 100% oxygen for a while although it was down to 65% when I left him last night. He wasn't back on the kidney machine, although his kidneys were not functioning properly and that was a possibility overnight.

Paul has no history of illness of any kind. He's a big man, a little overweight perhaps, but not unhealthy. I was interested in the fact that you say they found you were allergic to penicillin as I am really concerned about his relapse, although the doctors say this is fairly common for someone on so much support. He also developed a rash over the last few days and I am concerned this may be due to an allergy. I'm not really sure what I expect from making this post, except it has made me feel a little better writing it all down!

Thanks for your story, it gave me some comfort.

3

Hello

Your brother sounds like he has a few more problems than I did. I had 'only' endocarditis and didn't get many problems from the infection itelf once the antibiotics started working. I didn't have an allergy to penicillin when I went into hospital and was okay for about 2 weeks. I then started getting a small rash on my arm near the site of the cannula (needle).

Within a couple of days I had 2 different sorts of rashes and a very high temperature - I know it got to 39.9 centigrade which is pretty high. All this made me feel pretty ill with no apetite at all and feeling very week. I am very slim anyway but my weight started to really go down fast.

As soon as they stopped the penicillin I started to pick up and was okay-ish after that. All this was the first time I had endocarditis, on the second occasion it was more or less plain sailing, just stay in hospital for a month or so and take it easy.

Hope everything works out okay with your brother, if I can be of any help at all let me know, I will keep an eye out.

Good luck

4

Hi PaulK

Thanks for your article - it was really helpful.

My partner is in hospital with this and I am so worried.  We keep getting mixed messages from the health professionals who are great but this is hard!

One minute they are telling us they wont replace the valve until he is completely clear of infection and now they are saying they may do so in 10 days! 

I am not sure where the best place is to get clear advice - any suggestions?

many thanks

Louise

5

Hi Louise

Well, its certainly been a while since I posted my 'story' on this site and things have moved on.

I have had no more instances of endocarditis but back in 2013 my consultant suggested (at a routine once a year checkup) that I have my mitral valve repaired or replaced.

After a few tests including angiogram and trans oesophageal echocardiagram (!) I was put on the waiting list for surgery at Papworth.

I was originally told the wait was up to 5 months but as I had said I would have surgery at short notice I got a phone call just a few weeks later inviting me in for surgery in a weeks time.

I was admitted to Papworth in March 2014 and had a mitral valve repair the next day, they didn't need to replace it.

I was only in hospital a week and they really do treat major heart surgery as just routine. I can honestly say I felt absolutely no pain at any time and only rarely a few seconds discomfort.

The hospital advise complete rest for 12 weeks and not to carry anything heavier than 2 kilos, I would definitely take heed of this advice.

Now, over 2 years later I am completely well.

If I can help you with any other questions please don't hesitate to get in touch again.

Good luck.

Paul

6

Thanks Paul it's really good to hear from someone who's been through this. It came as such a shock for my partner to have this..he's only 47 and fit and healthy.

He has now been told he needs surgery soon ..in the next week to 10 days to replace the valve. They have also changed the antibiotics over the weekend....

I think it's the worry of having two things going on..surgery and the illness that is difficult.

Regards Louise

7

As I understand it endocarditis can damage heart valves, thats probably why the doctors are talking about replacing it. I was lucky in that the illness did not actually damage my heart valves, I had the mitral valve repair simply to reduce the risk of future infection. I also had what is called a maze procedure which is intended to stop fluctuations in heart beat.

You are quite understandably worried about your partner but he is getting the best treatment by the sound of it so I'm sure he will be on the mend soon.

Good luck, and get in touch again if you like.

Paul