Being disbelieved - did it happen to you?

[Amikatari]

Did you have a huge struggle to get doctors to believe you were ill?

I came down with endocarditis earlier this year, and suffered for 7 weeks before getting any treatment. I very nearly died.

I have an anxiety disorder diagnosis, and so doctors assumed/insisted that I was imagining I was seriously ill. If you have a mental health diagnosis, did it make doctors take you less seriously?

[Gazza01]

Terrible. I have a tissue valve and have to watch out for that too. What were your symptoms?

[Amikatari in reply to Gazza01]

Hi Gazza, my symptoms were a severe headache and pains all over, very heavy night sweats up to 3 times a night, feeling hot and cold, nausea, weight loss, diarrhoea, racing heart, feeling faint, breathlessness, exhaustion, sweating, shaking, migraine aura, blind spots, splinter haemorrhages. My temperature was fluctuating, sods law, it was normal every time it was taken, until it showed as nearly 40 degrees, which was the only symptom that convinced them to help me. Even the heart murmur and fast heartbeat weren't enough to convince them. The heart murmur was detected the first time I sought help and the doc said that lots of people had them and it was probably nothing, despite all the other symptoms.

[Gazza01 in reply to Amikatari]

Incredible. I also have some history of anxiety and you are 100% correct. As soon as they see that from then on that's where they are going. So how are you. Did you have just high dose antibiotics or has it damaged anything. Do you think it was from dental work. Do you take antibiotics before dental work?

[Amikatari in reply to Gazza01]

Hi Gazza, I was on IV antibiotics for 6 weeks and then had open heart surgery to replace my aortic valve with a mechanical one. I'm now 3 months post-op and recovering really well, thanks.

I don't know how the infection started, but they found out why my heart was susceptible to getting infected - it turned out I was born with a bicuspid aortic valve, which was probably already regurgitating. The endocarditis damaged the valve further and I had to have it replaced.

I've never had antibiotics with dental work, but I will now.

It damaged my eyes as well, I've been left with a blind spot in each eye, which are both really close to the point I am looking at, but fortunately don't 'overlap' and so my vision's only affected when I shut an eye. If they overlapped, I would have a blank spot where the point of vision should be.

[Mary_Janet in reply to Amikatari]

Hi there,

I can relate to so much in your journey. I was diagnosed with endocarditis in May 2017, like you I had an underlying undiagnosed bicuspid aortic valve and also required OHS and have mechanical valve. My lead up was a ten day history of fevers, night sweats, bone ache and headaches, I saw an emergency GP who was very thorough and kept saying I looked too well for how I was feeling, on a whim She listened to my heart and heard a murmur, never knew I had one, on that I was immediately admitted to hospital where I stayed for nine weeks. I was very lucky, I have been told that a GP would not always listen to the heart with my presentation. The infection entered my body because I lost a filling !

I am so sorry that your diagnosis took so long and am glad to hear that you are recovery is going well. I hope that you have been referred to cardiac rehabilitation, I found that very helpful both physically and emotionally. I don't have mental health issues but the whole experience left me scared and lacking in confidence . On discharge as well as being very weak and skinny, I had a dropped foot but that recovered quite soon. One if the antibiotics (gentamycin) I had has slightly damaged my hearing and I have more if a tendency to be dizzy especially when tired. I am in good health but worry about catching any infection.

I wish you well with your recovery and hope that you have good support to help you. I have written quite often about this on this site which you may or may not find helpful.

Best wishes

Mary

[Amikatari in reply to Mary_Janet]

Hi Mary, thanks for sharing. I've just read your other posts, and they have given me hope for the future. I admire your positive approach in dealing with such a frightening and stressful experience. Yes, our experiences are very similar.

[Mary_Janet in reply to Amikatari]

Thank you for reply. I feel that I was very lucky with the nursing and medical team that were around me. I am also very lucky with hugely supportive husband and children, wider family and friends. I am usually a cheery person but definitely had low times. The whole diagnosis was such a shock, I had an excellent cardiologist who was very good at getting me onside with treatment ie telling me I had to have to have treatment or I would die, helped focus the mind ! Once in the recovery phase I have been determined to get back to full strength and repay all the medical care .

I did find the whole recovery very hard work and struggled for a long time with exhaustion and lack of energy. As I stated before I found rehab really helpful. Also I had a couple of long talks with my GP trying to get my head around everything. You will get there but do remember that recovery is a marathon not a sprint. You will have days when you can do a few things and then days when you feel exhausted and floppy. Hopefully you will have more better days then tired days !

Best wishes

Mary

[lettingoffsteam]

I totally agree with you.I am very anxious and I often feel that all the doctor hears is that and not my symptoms.I am so sorry you had to go through such a potentially dangerous situation due to this problem.Hope you are well now.

[Amikatari in reply to lettingoffsteam]

Thanks! I hope you're ok now, too. And doctors should realise it's normal to be scared about serious illnesses rather than seeing our anxiety as irrational. I hope you're getting all the medical attention you need even though it can be a struggle to be heard.

[lettingoffsteam]

Thanks Amikatari.