Hi, I ended up in hospital with endocarditis in April and was also diagnosed with a bicuspid aortic valve with severe regurgitation. I was on IV antibiotics for 6 weeks, then had open heart surgery to replace the valve with a mechanical On-X valve.
I was doing well until about 3 weeks ago, but then started getting more fatigued, my mood dropped and I had a few worrying night sweats and mild fever. I saw the GP and my CRP (test for inflammation) was fine at that point so she said it was a virus. Then this weekend I started getting left-sided chest pain when breathing, and that side of my chest feels 'full', as though there is no room to breathe. I had to have a chest drain after surgery, and it feels a bit like that. I saw the GP on Monday and she did a blood test to check for clotting and an ECG, but it all came back clear.
I've still got the pain today so I saw a different GP and he tested my CRP, and it is now at 59, which is ten times higher than a 'normal' reading. He has referred me to hospital, but it's the same hospital where I was bullied and accused of injecting drugs and lying about it before they found the real cause of my endocarditis. They initially tried to turn me away, saying it was just anxiety and my doctor should not have referred me there, when I actually had sepsis and was practically dying. Nurses were unkind and told me off for crying, using my buzzer, not using my buzzer, leaving an item of clothing on the floor, asking them to clean and flush my line, etc. I think they'd all been told I'd brought the endocarditis on myself by injecting drugs and therefore had no sympathy, or had been told to treat me harshly to teach me a lesson. I was constantly given my IV antibiotics late or at random times, it was down to me to remind them every 4 hours, day and night, and they took no notice anyway. They kept telling me I was imagining these problems because of my mental health. They told me at one point that I was being treated that way 'because people with mental health problems can be manipulative' (as though it was some kind of punishment, when I hadn't even done anything wrong), and when I said that was discrimination, they said 'it can't be, because the NHS do not discriminate'. The bathrooms were dirty - poo smeared on seats etc, and rarely cleaned even when I reported the mess, and I saw them taking elderly disabled ladies in there to sit on the dirty seats. They practised poor hygiene in general, so I ended up with a secondary infection in my picc line, which they said didn't matter, and just left it in and carried on using it. But they eventually rushed me to a better hospital to clear up the mess they had made of me. I was moved as soon as my bicuspid valve was diagnosed, possibly because they then realised I hadn't caused the endocarditis through drug use and were embarrassed about how they'd treated me? The second hospital was brilliant, heaven compared to the first.
So I asked the GP today if he could refer me to the second hospital, or any hospital other than the first, but he could only refer me to the first one where I was treated so badly. It's the basis of nightmares I've suffered ever since. The way they treated me while I was so vulnerable was more traumatic than the illness itself, more traumatic than my open heart surgery. My partner spent so much time advocating for me and supporting me there, that he lost his job. He's got a new job now, but I'm going to have to tell him I'll have to deal with it mostly on my own this time, so that he doesn't lose his new job.
The GP wanted me to go there tonight, but I couldn't face it, and my partner's going to drive me there first thing tomorrow. I know I have to go, but I'm so, so scared. First I'll have to jump through hoops and fight to get them to even assess me, if it's anything like last time, then I'll have to suffer them putting more effort into discrediting my integrity and sanity than actually diagnosing and treating whatever's wrong.
There's an added complication, in that, with my On-X valve, INR target range is dropped to 1.5-2.5 after 3 months, and someone entered this wrong on the system at the GP surgery, so it says 1.0-2.0. As a result my INR reading has only been 1.2 for the last 6 weeks, computer says this is perfect. I know, and the doctors there know, that it's dangerously low, but no one knows how to correct the error on the system, and so I'm taking more warfarin than the system tells me to, with the doctors' agreement, in an effort to get into the safe INR range, although my reading's still only 1.2. There's also a totally inaccurate note on my records that I'm putting myself at risk by taking too much warfarin against medical advice, which is obviously untrue because my INR's only 1.2 and the doctor agreed I should increase my dose. I have an awful feeling that the hospital will take a 'computer says no' approach and refuse to give me enough warfarin.
I'm so scared. I've previously said that I'd rather die than go back there, but I'm going to have to in the morning, and I'm too scared to sleep.
X 
dental treatment and antibiotic cover 
Nearly a year since mitral valve repair
A SLIGHT SETBACK
support for family members
