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Supertractorman

Sepsis the correct path ?

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Hi,  I recently found this site following the tragic reports in the news regarding failures of the NHS Out of Hours service in England to deal with a case of Sepsis. Unfortunately the Scottish NHS 24 also fail badly in this area as I suffered similar problems but fortunately had a Urology Nurse we knew who came up with the answers and saved my life by just an hour we were told later.

My case was 16 months ago and I had a Prostate Cancer Biopsy and I believe was given no antibiotics but that is another issue. The next morning at home I was sick, had a raging temperature and blood from every orifice of my body, losing my vision, speaking more rubbish than normal. My wife rang NHS24 on the Saturday morning and was told no Nurses or Doctors were available at the time but they would ring back, she then contacted our friend who took one look and said Sepsis, fetched her husband to drive me at speed to hospital, she rang ahead to a ward bypassing the system and a Doctor was waiting for me and put me in High Dependancy immediately and I remember no more for 3 days until being moved to a Urology ward. (From me leaving our house it took a further 1 1/2 hours for NHS 24 to ring back and say "You did the right thing taking him to hospital", what an understatement).

My saga however has continued with 3 / 4 months spent in and out of hospital at that time with numerous water works infections and catheters, followed from November this year when I had a Haemmoroidectomy and the spinal injection went wrong and froze my water works resulting in further infections and a TURP to scrape and reduce my Prostate which was blocking my bladder. This resulted in 2 months in hospital through Christmas & New Year and again numerous infections and different Antibiotics. At home now for a couple of weeks with a new Antibiotic yesterday and a bleeding and sore Penis and Testicles. I am told it can take 18 months to recover Sepsis so hopefully I have not got long now.

I would like to pose some questions on treatment and appreciate any comments from anyone with similar problems or an expert in this field.

1.   Was it right to be moved from the High Dependency Unit to a Urology ward with 6 beds around me and many of them with Water works infections already, especially as my immune system was low ?

2.   Urology Doctors seemed to know very little about Sepsis and I get the feeling their approach to Antibiotics is limited. Are their Doctors in other departments who are better placed and more knowledgeable in this subject ?.

3    Whilst our local Doctors are also helpful, I feel they are out of their depth with Sepsis and are not sure where to go.

4    I am also concerned about bleeding from my body as I have had a Heart Attack and a stent plus 2 Pulmonary Embolisms which have resulted in me being on Apixaban for life which is a blood thinning agent, and I do not want to make a nuisance of myself with Doctors, so what is best to do ?.

Thank you for reading this saga and any comments would be most appreciated as I am sure others who have had Sepsis can appreciate my concerns.

David

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Hi David,

Sorry to hear you've had such a rough time of it in the last few years. I'm not sure I'd be classified as an expert but I am a nurse with a critical care background and I work for the UKST on the support side. I'll do my best to answer your questions. Without having access to your medical records, I can only answer your queries with general information and advice.

 

The critical care staff wouldn't transfer a patient to the ward unless they felt they were well enough to be moved. We do regular blood tests on patients whilst they're in ITU / HDU and would be able to see how effective a patient's immune system should be from their white cell count and inflammatory markers. We would only isolate a patient if their white cell count was extremely low eg. in conditions like leukaemia and they needed to be barrier nursed or if, indeed they were infectious themselves. In fact, many of the older ITU / HDU's are still open units similar to a ward. Urine infections aren't contagious as coughs and colds are. Many hospitals now have a Critical Care Outreach team who will review ex-ITU /HDU patients daily on the ward to ensure they are progressing well. However, this does depend on the resources available at the hospital.

 

All healthcare professionals should be aware of sepsis and how to treat it effectively, although we do still hear about those who clearly don't. However, all patient's antibiotics are regularly reviewed by specialist microbiologists who are the experts in this field and they can be reached 24/7 for immediate advice on which would be the appropriate antibiotic to use in new cases, if the doctor's were unsure. When a patient is admitted with a suspected infection, you have to make a 'best guess' as to the organism involved until the necessary specimens have been processed (which can take a few days) and the organism causing the infection is identified. Sometimes you never find out which organism has caused the problem. So choosing the right antibiotic first time can be problematic and a patient may need to have them changed before the best one is found.

 

All hospitals and GP surgeries etc should now have policies to identify and treat sepsis and the UKST have 'Toolkits' on our website for healthcare professionals to use if they are unsure.

 

The best people to talk to about your Apixaban are your GP initially, who should then refer you to the cardiologist, haematologist or medical consultant who prescribed it, for advice if you are having episodes of bleeding. A different anti coagulant may be more suitable.

 

I hope this has helped and you'll be feeling much better soon.

BW,

Libby.

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Libby,

 

Thanks very much for taking the time to reply to me, it is much appreciated and has put my mind to rest especially as you are knowledgeable in the subject and there never seems enough time on a Doctors appointment to talk about what could be called ancilliary items, such as transfer of infections.

My references to Doctors knowledge of Sepsis and Antibiotics is because I have been on so many different Antibiotics and I now see the reason behind this, but I have found that the Antibiotics given by injection seem far more effective than the tablets.  Also none of my Doctors has ever given guidance as to how long Sepsis might be with you, and the 18 month average period given by the telephone adviser on this site has been the most welcome advice so far.

Regarding the blood thinning tablets, I was on Rivaroxaban with nose bleeds lasting 3/4 of an hour every 5 days plus I was regularly taking Gaviscon for Heartburn, and it took ages to get my Doctors to try something else. For a month now I have been on Apixaban with no nose bleeds or Heartburn so seems a winner to me, and can only assume the bleeding which had stopped for a couple of days until this afternoon is related to my Prostate.

Thank you again for your help.

 

David

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Today I had a meeting with my Consultant as still bleeding and terrible pain in penis, testicles and groin, and he now says I have Prostatitis and will have to have a course of Antibiotics for 6 weeks, but it may well continue and return in future years. As infections and pains have lasted since I had Sepsis does anyone know if there is a link between Sepsis & Prostatitis ?. As I am on Active Surveillance for Prostate Cancer and was offered removal of the Prostate at one time, would it be an option to consider if the 6 week course of Antibiotics did not work, or would this option not be made now ?. I would add that this has really come to a head since my TURP and it makes me wonder when or how I can get rid of pain and stop having to make regular visits to a Doctor.

 

David

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It would help if they gave to adiqate antibiotics and cleared the infection.

Then put you on a manitance dose.

You should have IV antibiotics

But with cost and we doctors now reluctant to give them.

 

Cost of IV antibiotics for one week is £300.

Assume that's once a day?

Why they are explensive..

When water and antibiotics can't be more than a few £'s

Vaccine is charged at £2 to the chemist and £7 to the NHS.

I've been on oral it's less effective than IV.

The stomach can't cope.

They keep going on about getting resistance when they haven't cleared the infection to start with. Then they take you off them and don't give you anything else.

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Now we are in June, still full of urine infections and can only think it is from the Sepsis about 22 months ago. Had so many different A/B's to take and none have really worked, and urine is so smelly the bathroom stinks and needs air fresheners. Consultant says it is nerve pain from the TURP operation in January so is referring me to Pain Clinic, what a waste of time. Took a private consultation with an expert on Prostatitis and he says problem is infections and I maybe need hospital for intravenous A/B's as the infections have to be brought under control before looking at any other problems. He would only remove the Prostate as a last resort and wanted to know who the Infection Specialist I was seeing and I had to reply I had never seen one, and he said he has 3 people he works with who he would want me to see. Went back to my Doctor for a referral to his health area only to be refused by local Health Authority because I had taken a private consultation, but no NHS consultations can be offered outside my Health area in Scotland. Getting worn out with all this hassle having to make phone calls trying to get help, and having to take pain killers day and night with little sleep. Just wish I had never seen Sepsis as it all stems from that and am getting really depressed with it all, and can't even see an end to it.

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Hi Supertractorman

Hope you are feeling better than you did a few days ago. I'm a Sepsis survivor and I live in Scotland. My sepsis in February 2016 was a result of a trapped kidney stone which resulted in urosepsis, septic shock, pneumonia and pulmonary embolism.

I sympathise with your frustration at the medical profession. I had marvellous care while an inpatient and know they saved my life on numerous occasions during my month stay in hospital. My problems have all been in my after care. My referrals for follow up upon my discharge were all inadvertently done as routine instead of urgent. My GP practice made telephone calls and then I followed them up. On some occasions I was spoken to dreadfully by admin staff inferring I wanted to jump the queue and wanted special treatment. As you are probably aware there are treatment time guidelines and if you have been referred as routine then you will have to wait until the limit of the timescale.

For example I was told it would be September before I saw a physiotherapist for assessment but because of my dogged persistence to follow up every phone call I am starting my physio this week.

Every consultant I have seen for follow up has apologised for the delays and told me it is unacceptable that someone who was so critically ill has had to fight to get appointments. I would like there to be specific guidance on follow up procedures for people who have

had sepsis. It may already be there but in my case it was not followed.

Once again I hope you are feeling a little better and it is tiring and frustrating but keep on fighting to get the proper treatment you need. What about your GP practice could theysupport you or help you to access treatment? A good GP is "worth their weight in gold".

Take care

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Lesley Anne, Thank you for your kind comments and encouragement and it makes interesting reading of others who struggle with the medical profession. Maybe many Doctors have never experienced constant pain, so are unable to understand what it is like. I have experienced the queue jumper syndrome and also the don't know what to do with you next syndrome.

Unfortunately our GP's are 3 Part Time Lady Doctors who seem very capable but not the same as having the same Doctor there every time you ring up and who is experiencing similar problems daily.

It would be great to learn from this website if there is a link between Sepsis, Prostatitis and Urinary infections or am I just a one off.

Also as you say Lesley I just wish the Sepsis Trust, Macmillan, or Prostate Cancer and other trusts could publish details of where to turn to when you are in pain and looking for medical help, and your Doctors and local Health Authority seem to have no urgency.

My Doctor has promised me another opinion locally and the letter came yesterday saying I am on a 12 week waiting list so not at all happy as sitting here in pain and sweating like mad soaking my shirt etc., as full of infections.

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Hi David,

I'm sorry to hear you're still struggling with recurring infections and prostatitis. Infections throughout the urinary tract generally (without sepsis) can linger for a long time and be difficult to cure but with the addition of sepsis, which as you know often affects the effectiveness of your immune system afterwards, will make it much harder to get on top of. That said, you're the one trying to cope with the ongoing pain and misery of constant infections and feeling unwell most of the time.

 

Can I ask what the NHS specialist advised back in February when s/he identified the prostatitis? Did s/he follow you up after the antibiotics hadn't worked and offer you additional treatment? What did the pain clinic suggest and did they follow up on the effectiveness of the treatment because it can take several attempts to get the pain control needed. There should be immunologists within your area who would be able to check your response to infections, to ensure there's no underlying problem they could treat, that your GP can refer you to.

 

Could you speak to your GP again and ask if they could get you seen earlier?

BW,

Libby.

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Hi Libby, Thanks for your response, and everything has got really complicated with our NHS Scotland local Health Authority.

I was instructed by Consultant in Feb to go on 6 week course of Ciprofloxacin. When it finished Dr confirmed still infected and put me on Nitrofurantoin, followed by Ofloxacin and Pivamicillan plus all through this time being treated for Thrush continually with tablet, cream and special soap wash. In mid April saw Consultant again who was 1.25 hours behind schedule and in 8 minutes told me there was nothing he could do with my pain as it was Nerve pain, no comment to make on infections or the incontinence I was suffering. He said he would refer me to Pain Clinic and Physio people for incontinence. It took 5 weeks for him to even write to my Dr after and the Pain Clinic sent me a survey form about a month ago with no further reply. Physio people have never made contact so I suppose nothing was done. I asked my Dr for a private referral to a Prostate Specialist in Edinburgh who was excellent saying unless my infections were sorted out, nothing else could be done and if the worst came to the worst my Prostate could be removed as I was classed as having Cancer. He also inquired who my Infection Specialist was, and I had to reply I have never seen one. He said if I could get transferred to Edinburgh he was sure he could help me. I made a request to my Dr who applied to have a referral from this authority there. It was turned down as I had gone privately and should pay for private treatment which I cannot afford. They asked me to have a second opinion at another local hospital with a member of the same team of Urologists which I am with at present which is not really satisfactory as I cannot see one going against a colleague. My Dr sent off the same referral and last week I received a letter to say I am now in a 12 week waiting list for an appointment.

My pain in the Prostate and Privates area is continuous with my pain control concentrating on 4 x Tramadol 50 per day and 2 x Tramadol 150 per day which hardly help now. Infection still running wild with urine stinking and painful passing water and now on Trimethropin for another week. Dr does not know what to do and tells me keep ringing other Specialists secretary to speed appointment , but she has not responded to messages. Also now have bad pains in my groin area when walking, so am now restricted in that area and cannot walk far.

Just do not know what to do or try, but luckily I am strong willed with a supporting wife and my poultry and pets to look after meaning I must do things daily.

Happy to do or go anywhere at my expense just to get rid or ease this continual pain as it is getting me down. Certainly here it is not a National Health Service just a local Health Service with no money and nobody seems to want to help in that organisation.

Sorry for the long note Libby, but it may help you understand my scene after Sepsis and where I want to get to.

 

David

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Hi David,

I can certainly appreciate the difficult situation you're in. My thoughts would be to phone the Pain Clinic and the physio department and ask how long it will be before you're seen. If you don't get any dates, then could you contact the secretary of the specialist who referred you to them, so he can chase it up.  

Regarding your pain - could your GP suggest alternative analgesia to help in the meantime and has anyone rechecked your urine sample to see what organism is causing the infection still? Have you been referred to an immunologist yet?

 

I hope this helps.

BW,

Libby.

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Hi Libby,

Thanks for your reply.

Currently am waiting to see which hospital they are referring me to for Pain Clinic and Physio, so as soon as I know I will progress.

Still not referred to an immunologist and no urine samples have been requested for a while. Dr believed increased dosage of Tramadol would help pain, which it seemed to do at the start, but in my opinion the infection is getting worse, and the Thrush will not go away even following all their instructions, so all this is making things worse. Consultant locally referred to for another opinion is "away" for July and his appointments are full for June so I have requested any last minute cancellations.

 

David

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They don't want to spend money on IV antibiotics giving you pain killers is not going to treat an infection.

The cost of IV antibiotics is over inflated.

You need several different antibiotics given on the same day. To kick the immune system into action.

I am being left till August to go to St George's having being left since 2014 with inflamed infection after I the heart scan dye set my legs off..

The NHS refused to believe they gave me cellulitis neuropathy and sepsis as a diagnosis.

My family and I myself are pron to sepsis.

If it was not me going to a private hospital I would not of been given any treatment.

I can't afford enough. But it's better than the NHS

solution.

All that St Georges is going to do is to look.

They are not going to to do anything.

I have already been told I have cellulitis and Lymphdemia. But they go into denial that I have infection...

They seem not to be able to understand the blood.

 

My Nitic acid is high and my inflammatory cells are raised.. But my White cells are normal.

So they the NHS refuse to treat.

 

The white cell count is not proportional to the infection. Infection evading the immune system. It does not always show.

The body does not recognise the infection until the the antibiotics levels is increased.

The NHS does not want to give IV.

Even giving an implant like cancer patents so you can't treat yourself at home.

The NHS have stopped people doing it themselves at home the district nurse has to do it.

I don't know if I can say where I go.

To at least get some treatment.

 

The government/NHS have been up to no good the lab was closed in 2012. The Mod are still up to no good.

 

I have chest pain and high blood pressure.

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Well here I am now in November still not free of urine infections and seem to be rotating between Pivmacillan and Nitrofurantoin a month at a time and neither works for me. Had a battle with Doctors as many of the samples were never sent to the lab as dipstick showed nothing, yet when I argued the point about pain passing water and other problems the next sample was sent and had infection with recommendation to use the above Antibiotics. Have had MRI scan showing Prostatitis and cystoscopy which was clear but still to see Consultant in Edinburgh. Still incontinent and E/D still the same. Following Pelvic and Knee pain they now say I have Osteoarthritis in my left knee and maybe a cartilage problem but on a 12 week waiting list for a Physio. Just seem to be going downhill and not getting anywhere. What I cannot understand is if these A/B's are not working surely they could try something else as continual infection can not be doing me any good after over 2 years since Sepsis.

 

David

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I was recently reading recommendations by N.I.C.E. relating to urine infections and Antibiotics and it says if infections are not cleared up after 3 months then IV antibiotics should be given. I referred this to my Doctor and she said N.I.C.E. was not recognised in Scotland. Anyone know anything about this ?. What can happen if infections are never cleared up ?. Really down this weekend as Physio on Friday said my knee now needed replaced, am I ever to get away from Doctors and Hospitals.

 

David

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Hi David

Have you tried www.sign.ac.uk/ This is the Scottish equivalent of NICE but if you are more knowledgable about the NICE guidelines then you could still ask why the practitioner's decision seems to contradict them.

Louise

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I forgot to add (brain bit scatty post-sepsis), have you looked into pro-biotics to help with the UTIS? Some people think they can really help. I got some from a company called Optibac (not paid to advertise) and you can speak to their advisers for optimal ones.

 

I can understand your frustration about Drs and Hospitals. I have been sucked into the "Hospital black hole" since October, every week a different medical appointment! But my friend's Mum just had her knee replaced and it was superquick to get rehabilitated. Just a couple of months later she had the second one done too!

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Louise, Thanks for your kind words, and will have a look at sign. In Scotland I believe things are much worse in the NHS than England and Drs are trying to keep patients away from hospitals plus I know some of the tricks being done to bypass the waiting time targets. It sounds like knee replacement may be better, but on reading up on it today it seems you have to be clear of urine infections before they will operate !!.

 

David

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Just wondering when the results of Sepsis will ever end, as I still have the pains from Prostatitis and am currently attending hospital every day for Intravenous Antibiotics for 28 days. Nearly half way through but still have infections and yesterday advised I will have to have a further resection of the Prostate as I am holding urine in my bladder which makes my infection worse. Then I was told it is likely I have infection between my foreskin and penis which have virtually welded together so I will have to be circumsized to free up the skin. I really dread the thought of that and imagine it to be really painful in my 70's. Will I ever get rid of the results of Sepsis. I have asked this time if I can stay a minimum of 36 hours in hospital after the op as I dread having another Sepsis bout and NHS24 are a waste of time if you have a problem as urgent as Sepsis.

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