10 Days IV antibiotics and still unwell...

[Yess1e]

Hi lovely people,I went into hospital the Friday before Christmas and came out on the 30th December. I had 10 days IV antibiotics (it was pretty challenging as I only have one arm they can use and the veins are damaged from Chemo - so cannula's kept failing, leaking etc).

I felt it too a long time for any response in my body. 5 days and I just started feeling some change. At what I felt was 9 days they said that was it and I told them I started coughing up green sputum and my lungs felt irritated. They discharged me and I've got worse and worse since being home.

I've not been anywhere, a friend staying with me is a transplant patient and is immunosupressed, he hasn't got what I have, so it's not viral. (He has got iffy sinuses, not sure if that's reflux, post nasal drip etc).

I've got fevers from 5pm, night sweats, headache, coughing up more and more sputum (getting darker green) and now something in my right side of my chest hurts when I inhale, cough, move in certain ways, airway clearance is painful.

The hospital said it'll be viral and to take antibiotics if i really wish to.

But I'm on Amoxicillin 5ppmg 2x a day as a prophylactic, it's not helping at all.

There was guidance in which antibiotic to take and Co-amoxiclav didn't get rid of the infections I went into hospital for.

I've emailed them again (feeling like a right bother) and sent another sputum sample yesterday. But today it's a little bloody.

I don't think the 10 days cleared my infection.

Any thoughts on what to do?

[sassy59]

Hi Yess1e, I’d contact 111 and explain everything to them. You need help and you need it now. Xx

[Swizzy]

Your treatment obviously wasn't correct or efficient. Do you have your own consultant? Hospital doctors do not know how to handle patients who already have compromised lungs and treat them as they do a normally healthy patient with a chest infection. You probably need more IV. A midline can be put in which lasts up to a month and avoids all of the bother with your veins. You need a different, more effectivr antibiotic for at least 2 weeks. If you have a consultant get hold of them. If not, go to your GP anf make a fuss. The duty of care to you is being neglected and you can't leave it for more damage to be done. Amoxyl is about as useful as a box pf smarties and giving it as a prophylactic is a very old fashioned thing to do.

[Yess1e in reply to Swizzy]

Thank you. I agree, but they're not prepared to do anything. They've said prior to me leaving hospital that I've got my GP and A&E if I've any worries...I'm not going to A&E.

I feel I've hit a wall with them all.

I feel so upset as I did these 10 days as an inpatient. I've such a long medical history of cancers etc and still I come up against this...

[Swizzy in reply to Yess1e]

I'm so sorry. It makes one feel so helpless to suggest anything else except that you go to the GP and tell them everything that you have told us.

[Yess1e in reply to Swizzy]

Hi Swizzy you're so kind. I do feel massively disheartened and so unwell I'm in bed which is not me at all. I saw a GP and she wasn't interested. Said my SATS and heart rate fine, No sounds so chest clear and didn't like it when I said most often you won't hear a thing. Wouldn't do my CRP and did that ridiculous thing that perhaps when I had a larger episode of haemoptysis before Christmas, it might have been a nose bleed! It's SO patronising. 😥

[Swizzy in reply to Yess1e]

I really do think that you should become pro active which is the only path open to most of us. You are being neglected because of laziness and ignorance. Your GP obviously knows nothing about bronch which is usual.This may suit your medics but it is only going to result in more lung damage for you..Look at the websites of the big teaching hospitals nearest to you. Find a bronchiectasis specialist. Not a general respiratory consultant. They don't have enough knowledge of bronch

Take the name to your GP and insist- not ask - insist on a referral.

If the GP tries to refuse send an email to.the practice manager. Explain that you are not getting the proper level of care and management and will begin a formal complaint. That usually concentrates the mind.

[knitter]

You are not being a bother at all

I would advise you to ring 111 as soon as you can .

Best write down your symptoms first , your recent medical history and treatment , then ring 111 They will advise you on the next step .

Make as much fuss as you need , don’t worry , health professionals are there to help

[Yess1e]

Hi thank you all. The doctors at a specialist hospital aren't bothered, they keep saying virus, but it's not, I've isolated. I saw a GP who did all the textbook worst things. She said I've no fever (because I'd taken paracetamol and stood outside for 10 minutes and then sat in my cold car). She said she heard no sounds in my lungs so a clear and refused to take my CRP saying it was clinically unnecessary. She wanted me to try the antibiotics I can't have like Ciprofloxacin, Co-Trimazole and Doxycycline. So she said take Co- Amoxyclav and agrees not worried. I said 2 weeks of that didn't work prior to hospital. So I've got nowhere. I don't think I can do anything more until Monday.

I wish they would listen to patients who explain you can't always hear anything with Bronchiectasis.

[Lol1944]

my advice. Straight back to a/e and official complaint as to being sent home with an obvious infection

[Patk1]

I'd ring 111, perhaps get seen by outnof hours dr as yr obviously unwell. Infections can cause more lung damage the longer they drag on so u need treatment x

[islande]

I hope you get a medical professional to listen to you ASAP.best wishes.

[Blue58]

I'm in a similar situation. Two weeks IV before christmas and sent home poorly after protesting I was still ill. One week later and back in hospital with serious infection. Haven't seen my bronchiectasis specialist Consultant in almost a year despite being in and out of hospital with repeated infections and seem to be put in the hands of Consultant physicians or general respiratory consultants who really do not understand bronchiectasis. It's very frustrating as constantly being told my own consultant is not available and I do wonder what permanent damage is being done to my lungs because of it. Clearly two weeks of IV antibiotics didn't clear my infection but two weeks of antibiotics seems to be the magic figure today as the cure to all. Only advice I can give is protest, protest and protest again. Not very British but we really do have to be our own advocates. It shouldn't be like that especially when you feel so ill but the sad reality is that without making a fuss you very rarely get anywhere. Best wishes and I do hope that someone will listen to you soon as you know your own body better than anyone.

[Yess1e in reply to Blue58]

Thank you Blue58 I hope you're feeling better and recovered now?

I am not, I've tried pushing and also then coughed up blood at the GP's. My CRP was 31 so not through the roof, but I'd been on Co-Amoxiclav for 4 days then. I've no idea what to do next. The specialist hospital are absolutely not interested. I've tried so hard to get them to help and they've said go to A&E or primary care, they're not going to help now they did the 10 days IV and that I was lucky to get a bed over Christmas. (I was grateful,l but I was very ill so I don't know why they're trying to make me feel guilty or something) there were 7 inpatient in total of two wards over the 10 days I was there as no one wanted to be in over Christmas.

I've loads of mucus in my chest and airway clearance is triggering quite severe nerve pain (the whole area is sensitive from radiation treatment for lymphoma) so I'm struggling and nervous to do that and also I don't want to cause a bleed.

I feel very low in mood now as I've been pushing for support with this bleeding for over 2 years and each time Dr's say it's no way to live to not be able to cry, have a relationship, to stretch or lie on the floor and stretch my back without bleeding. Then they do nothing about it, I guess because I fit no standard criteria.

I know when I stop Co-Amoxiclav in a week that this infection will take over again and they'll still say they don't believe I have one or can't sample it. No idea why it's not showing in samples, I wish they'd swab my nose as that has the same green in it and that's causing bleeding in my nose...would make sense to me, to see if it's the same infection.

[Blue58 in reply to Yess1e]

I think you've hit the nail on the head with your comment about standard criteria. Some years back I was under the care of a Respiratory Professor who taught me that blood tests/sputum tests don't always give the answers they are looking for and therefore these tests should only be used as indicators of an infection but never a diagnostic. He said a far better indicator is by listening to the symptoms the patient is giving and certainly by the use of a stethoscope. Sadly today's Doctors have to work to guidelines within a tick box (standard criteria) and therefore if no results show in blood tests or sputum tests which are not 100% reliable, I myself have found that my infections have got worse and furher unnecessary damage has been done to my lungs as a result of the guidelines they have to work to today. It's not always the Doctors fault, rather the guidelines they have to work to. You know your body better than anyone and if you are not happy with what you are being told, never be afraid to get a second opinion and keep going until you find a Doctor that you are happy with and one that you feel is listening to you because that matters, not only for your physical health but mental health also. It can be soul destroying if you feel you are not being listened to. It's hard if you feel you are constantly hitting a brick wall but honestly there are some good Doctors out there who do listen and who will work around the guidelines and there are others who only work to the guidelines. This is why sadly we have to be our own advocates and protest when we feel we are not being listened to.

I do hope you are feeling better soon. I am still in hospital having been told after 2 weeks of IV antibiotics I was fit to go home only to be back in a week later with the same infection having a further 2 weeks of IV antibiotics. That's because the Doctor I was under during my first 2 weeks thought that would cure my infection as that is what the guidelines state. Fortunately this time I am under another Doctor who is more interested in getting me well than adhering to guidelines. Please keep pushing for answers and never be afraid of being made to feel like you are a nuisance. That's the advice given to me by a close family member who is a senior nurse.

[Yess1e in reply to Blue58]

Blue58 Gosh I'm sorry you're back in the hospital. It's awful the dance that goes on around these infection/protocol/not listening to the patient, as it's harmful to our bodies. All these antibiotics and the inflammation and damage. I really hope that this Doctor gets you well before you leave, he sounds like a good one.

I've no idea where to find another Doctor, what I liked about the specialist hospital is that I felt a bit safer in terms of other infection risks as the have no A&E. There is also an issue in that Doctors all know one another in specialist areas and the Professor I saw is 'the big I am' in Bronchiectasis so I could come up against it a bit seeing someone else. That happened with Cardiologists, I got told I was fussing and wasting peoples time. The registrars under this Professor all kept saying I was lucky as he's the know it all, so his word was golden. I told them I wasn't better when they were telling me I was leaving the next day.

I just don't know where to turn now to be honest. The Co-Amoxiclav is helping, and I've about a week left. But I'd be tempted to do 3 weeks as I know that this will rear up the minute I stop taking it. There's still green but less there, so I'm hoping a prolonged course might work...

I've asked a good GP to write to the hospital and tell them I'm still not well and what do they advise. I explained the infections and bleeding have left me feeling so anxious and low in mood due to no support that I need someone to help me. That said, they've never really wanted to do much to help. I've been on a video consult with a senior consultant, coughing up tons of green and bloody sputum while on the call, I asked him what to do and he ignored me, saying that he'd speak to me in 6 to 12 months...

When you google specialist in Bronchiectasis, these are the doctors I've been speaking to...I feel a bit at a loss.

[Alberta56]

If you are coughing up green sputum you are obviously ill. What are your medical team thinking of? I would try 111 NOW and, hopefully when you are a little better, write stiff letters to your practise manager and to PALS at the hospital. You have been badly let down.

[PaperQueen]

You really do need to get help Yess1e. All the symptoms would suggest you do have a serious infection which needs immediate attention. Do call 111 if your GP is not helpful. Best wishes for a speedy recovery. Sally xx

[garshe]

I agree with Sassy (Carole) sounds like your infection hasn't cleared up and you need more antibiotics. Ring Dr or 111 get yourself sorted sooner than later as could end up worse off "a stitch in time saves nine" xx.Sheila

[Lfcpremier]

Hi.. Was your sputum sent off for analysis at all? Did they do a CRP? . Both identiify infection & sputum result should suggest suitable antibiotic.Sounds possibly pleurisy though also an infection.

Agree.. Complain loudly. You need medical attention. Also contact Specialists secretary, ask for face to face appt when better.

Good luck! X

[Mooka]

If you don’t want to go to a&e you need to go back to your GP. If you don’t get sorted you will end up in hospital. Next time don’t take paracetamol before you go. Clearly the antibiotics you have been given aren’t capable of of clearing your infection. Take someone with you who can help fight your corner. A crp test will confirm very quickly the level of infection. I really hope you get some treatment soon and start to feel better.

[Yess1e in reply to Mooka]

Thanks Mooka I went to the GP and while there coughed up blood, Went to the MAU at the local hospital, was there for 12hrs and bloods showed CRP to be 31, though I'd been on Co-Amoxiclav for 4 days at that point (wish the GP has done the CRP at the start when I asked). I'm having a CT scan on Sunday that I pushed for. But this is almost unbearably anxiety making and my mood is getting lower and lower with the lack of help. I've still got lots of mucus in my lungs that's green and irritated lungs. I feel somewhat more physically well in general on the antibiotics, but what will happen when I stop!?

[Mooka in reply to Yess1e]

I hope the CT scan can find your infection and you get the right antibiotics for it. You’re not being a fuss pot, you’re not well and need some proper treatment.

[MoyB]

I agree with all the advice an comments in the previous posts.

Regarding your doctor being unable to hear any sounds through the stethoscope remember that not all stethoscopes are equal in quality and not all GPs have perfect hearing!

When surgeries were still telling people to stay away if they had a persistent cough, my husband needed to see a doctor due to breathlessness so was sent to 'the COVID hub' to be checked out. The doctor there listened to his chest and declared it clear.

The next day, my husband had an MRI for suspected prostate cancer.

The results were phoned through to him 'Hello, Mr B. This is so and so from the hospital. You had an MRI scan this week. Well, I have good news and bad news. The good news is that there is NO sign of prostate cancer. However, the 'not so good' news is that your lungs are full of fluid and we've made an urgent referral for you to be seen in cardiology.'

What does that tell you about the usefulness - or not - of having your chest listened to?! I someone cannot detect both lungs full of fluid, how could they hear a bit of crackling or the louder sounds our lungs make when we are struggling?

Get a second opinion asap!

There is obviously something very wrong that needs attention.

Could you pay to see a private consultant? If you can't get seen on the NHS, it may be something to consider. £100 - £200 in my experience and worth every penny!

I hope you get somewhere soon with this as you are clearly unwell and being neglected by the people who should be helping you to get better.

Best wishes,

xx Moy

[Yess1e in reply to MoyB]

Thank you MoyB for your empathy and understanding. I need to find the right person to see privately, that's an issue as they all know one another. I had similar difficulties with cardiologist, they all knew one another and then labelled me a fuss pot and the private one then said there was no need to see him. What is all the more disheartening is that I saw a professor at one of the two main respiratory hospitals in the UK, so I don't feel reassured that anyone will help me. All I can say is how I feel in my body and the symptoms, but they're not doing anything. I've now been to MAU at the local hospital and as I coughed up blood when I went to the GP as I'd felt so unwell. Nothing has really come from that, though I've asked to have a CT scan. All this and not being able to grieve my Mothers death a few months ago, because when I cry my lungs bleed...

[MoyB in reply to Yess1e]

I do hope someone takes your concerns seriously and offers you the correct treatment soon. Xx Moy

[watergazer]

I’d probably contact 111. You’re obviously still poorly. Take care xx

[Germantara]

I m sorry to hear you're so unwell I do hope you get sorted