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Supertractorman

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Everything posted by Supertractorman

  1. I had Sepsis 5 years ago and still get worrying flash backs. Since Sepsis I have had continuing UTI's and my current infection has been continuous since May 2018 when I had my Prostae removed due to Cancer and they thought it would get rid of the UTI's. Yesterday on a visit to my Dr, I was told that they now have virtually run out of A/B's to treat me with. Does anybody know of any research projects being done on this, as I would willingly volunteer as I feel our local NHS have little interest. The news yesterday has made me very worried and wonder what will happen if Sepsis was to occur again.
  2. 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.
  3. The Dundee University and Ninewells Hospital were advertising and asking patients attending the hospital if they would like to help. I went along to an introductory meeting to learn about what it was about. Apparently this has been going on for about 10 years here and other teaching hospitals are now taking it up. They are looking for patients who have certain conditions, maybe a heart flutter or arthritis to answer questions and show that condition or people who will act out a condition such as a Heart Attack, Incontinence, Sepsis, leg and ankle pains etc or maybe act out a grieving or aggressive parent or relative. They also have replica wards which are identical to any hospital ward and trainee nurses have to take temperatures, blood pressure, help patients to the loo and answer questions as if you are a first time visitor as a patient to the hospital. They will also have scenes where the Trainee Doctor is left in charge of the ward and events happen to see how he/she reacts. I find it very interesting and a way of helping trainee Drs, Nurses & Pharmacists get practical training on real people. If you are interested contact your nearest teaching hospital to see if they have a scheme. David
  4. Last year I became involved with the local hospital Patient Bank Programme where we role play or display our own conditions to student doctors, nurses and pharmacists, for their training courses. When speaking with them I like to raise my experiences of Sepsis in the hope they are made more aware of the condition and what to look for. I believe many teaching hospitals are starting programmes like this nowadays and it is nice to help the youngsters in their career.
  5. 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
  6. Polly, I know exactly how you feel and am suffering with infections since Sepsis which have never gone away. There does not seem to be anybody in hospitals who deal with getting rid of infections after Sepsis, as I was put under Urologists who did not seem interested in infections and know I have been released from hospital before the infections were clear as they needed the beds. If each hospital had someone who had an interest in Sepsis and saw everyone who had Sepsis I am certain they could offer advice to people like ourselves on this forum. David
  7. 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
  8. Larry, Reading your comments above, they are so true and I am nearly 2.5 years since having Sepsis and have continual Urine Infections. It is reassuring that others are having " flashbacks" as I thought I was imagining it myself. I just cannot understand why my Doctors will not try different antibiotics to see if one will cure me. All I ever get is Nitrofurantoin or Pivmicillan surely there is something else out there as I believe until I am infection free I will never get rid of Prostatitis which I am sure Sepsis gave me after a Prostate Biopsy. Is there much research being done after Sepsis has caused us all damage ?. David
  9. 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
  10. 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
  11. 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
  12. 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.
  13. 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.
  14. 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
  15. 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
  16. 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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