Return to hospital in the morning - posting for support

[Amikatari]

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.

[stillaboveground]

Hi I hope you get a bit of TLC when you go back this time, maybe the NHS do not discriminate but some people working in the NHS do I am afraid, try not to worry too much things might be better this time. I will be thinking of you.

[Amikatari in reply to stillaboveground]

Thank you so much for your kind words of support, still aboveground. Yes, they definitely discriminated, among other things, and I was just getting emotionally strong enough to raise a complaint, when I was referred back to them! Probably best that I haven't raised a complaint about them yet! Thanks, I'll let you know how I get on, sort of hoping they say there's nothing wrong so the doc has to refer me elsewhere for a second opinion!

[Milkfairy Heart Star in reply to Amikatari]

Amikatari

I have only just read your post.

Are you okay?

[MichaelJH Heart Star]

Hope things go well today. Bring a life long diabetic I have come across medical professionals that form an opinion and become hideously blinkered. Once I was taken to hospital alternating between being feverish and shivering whilst having repeated bouts of nausea which included blood. A registrar stood at the end of the bed taking the other staff I was one of those diabetics who had overeaten and it happened a lot in the run up to Christmas. Two days later he told me I had salmonella! I was on a drip for days and an inpatient for over a week! No apology though. I had had a similar thing a few years earlier when eventually glandular fever was diagnosed.

So yes I sincerely hope you get staff without prejudices who think outside the box. Good luck!

[bantam12]

How about going to A&E at your preferred hospital, they will have your notes from previous stay and can admit you. If you don't like the other hospital you don't have to go there.

[Calliope153]

Can I suggest you take a notebook and pen with you? Keep a diary of dates and times of when you are seen and make a brief comment of what was said. My geriatric mother had extraordinarily poor care and I could get nothing done to help her. So out came my notebook whenever anything happened. When I finally became exasperated I asked for a meeting with the ward sister and to my total surprise was given a time to meet with her - there were two doctors and three nursing staff with her when i went into the room. When a doctor (young and clearly being used as the fall guy) assured me certain things would be remedied (for example why she was being treated as a type 1 diabetic when she was type2) I asked if we could meet again for a follow up in a week as I wanted to see the same person twice. He then had to admit he was moving cities the next day....... be careful with this writing a record tactic as staff really don;t like it (make certain you get their names) and my mother was scared they would treat her even more poorly as she said they would "feel under attack", She, of course, was dead right but she was moved into a very luxurious nursing home as they wanted to get her out as soon as possible. The nursing care she received there was outstanding. I wish you well but once the trust has broken down it is very hard to feel confident - I think Bantam12's suggestion is a very good one.

[Amikatari]

Hi everyone, I can't thank you enough for all your lovely, caring messages. It made a huge difference for me to read them all, and enabled me to face the day!

Today was a very pleasant surprise in the end. The doctor wasn't anyone I'd seen before, and he was polite, kind, really listened, and got all the tests done today so I didn't have to stay overnight. They did an ECG, took more bloods, did a chest X-ray and an angiogram. They didn't work out what the problem is, but were honest about that, rather than lying or telling me it was anxiety. They didn't find anything worrying, CRP has halved and the pain actually got a lot better throughout the day. He said to come straight back if symptoms get worse, but I don't think I'll need to.

Best of all, I'm no longer scared of that hospital! I'm probably still going to complain about their previous treatment, but I'm feeling more confident and validated from today.

Thanks so much, everyone X

[Sunnie2day in reply to Amikatari]

Great update! So happy to hear you had a different experience this time!

[Harrison4 in reply to Amikatari]

Hello there glad you had a better visit this time 😊

I would like to give you some information and facts about my Dad 😊 hoping it will help going forward When he was 52 he had a chest infection they listened and at that point they found a heart murmur this was in the early eighties, they did further tests and discovered he had a bicuspid aortic valve, he didn’t know but had it from birth, passing with an A star to get into the RAF years previously. It resulted in a replacement metal valve that lasted from 1982 until 2015 , it was pioneering in those days he was visiting the university hospital in wales to feed them regularly on his recovery etc

Years later he discovered there was a piece of kit that took thumb pricks this enabled him to take his bloods at home phoning his GP with his INR results . What freedom that gave him and some control back, he played bowls for the local team and travelled across the UK competing. Did all the things advised and lots of gardening Happy Days

I am very proud of his achievements and hope this little story helps you and others to look for the bright light at the end of what can appear to be a dark tunnel

Had a H A myself this March angioplasty and Stent and am pleased to say albeit I am struggling with an overactive thyroid and osteoporosis all diagnosed since, am in the way Up

Lots love to All 😊🏴󠁧󠁢󠁷󠁬󠁳󠁿👍💖

[Nuttynannie]

Omgoodness my dear dear lady what a dreadful and unforgivable experience you have had.You havent mentioned if you have a mental health illness aswell but I know from personal experience that this is how people like me are treated by a few healthcare workers.i have had terrible experiences in hospital whilst at my most vulnerable and couldn't believe I was being treated like it.When you mentioned you crying my heart went out to you the same has happened to me.For the past few years I had been visiting my gp telling the same symptoms breathlessness severe fatigue dizzy spells having to sleep propped upright with pillows yet because I have autism and bipolar I wasnt believed and was fobbed off leading to noone believing me and treating me like a hypochondriac so much so I was afraid to go even in a state of collapse.As luck would have it on one of the last times I went there a locum listened to me and referred me to cardiology where they discovered a large tumour in my heart 8 weeks prior to my open heart surgery I had been told emphatically by gp that it was definitely nothing cardiac wrong with me and prescribed even more psychiatric meds which I didn't take.All this has deeply affected me more than the open heart surgery.To feel so alone and not believed when you desperately need help is very frightening I thought nursing was the caring profession.

Your husband sounds like a lovely caring man who puts you before anything you are very fortunate to have him there for you.Try to focus on that love and cherish it is my advice this has been quite frankly all that has kept me going the love of my husband and family. I no longer have trust of gps I changed my surgery the day I was discharged my new gp is working on my trust issues yet the doctors who saved my life I trusted totally.in my experience the majority of nurses were wonderful what sticks with you is those that are far from that.The cleanliness issues I have seen for myself at one hospital we had 1 shower and 2 toilets for 36 people also lots of urine samples left in toilets poo on seats too.All my best wishes to you stay strong never be afraid to speak up for yourself and keep informing them of your medical needs if they are not being met think of the positives in life and dont let those who wrong you colour your life