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Maine

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Maine last won the day on 7 April 2016

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About Maine

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  • Location
    UK
  • Sepsis Aware
    Affected by Sepsis
  1. Hi Lyndseyann, I was sorry to hear you had such a rough time of it after having your little boy. As the others have already mentioned, it 's really hard recovering from sepsis, whatever the cause and regardless of whether you were treated in critical care or on a ward, it's a real rollercoaster of a ride for several years. Do keep in touch and these guys will help you through it. If we can be of any support at the UKST, just get in touch on 0800 389 6255 and we'll do our best. I'm actually leaving the trust at the end of this week but I'm being replaced by a gentleman called Larry who will be great - we worked together for years. Can I just wish you all the very best - you will all get there, it'll take a while but you will. BW, Libby.
  2. Hi Lesley - Anne, Thank you for your help with raising awareness about Post Sepsis Syndrome, it's much appreciated and I do agree, awareness is the key to support. At the UKST we do try and raise awareness re: the public and healthcare professionals about the after effects of sepsis as we appreciate how difficult it is for all sepsis survivors. Unfortunately, we are a small charity and so, can only afford to send hospital critical care units, GP surgeries, universities, public events etc a few samples of our Survivors' booklet, Patients and Relatives guide and factsheets on PSS. If they are interested in ordering numerous copies for their waiting rooms and public areas, there is obviously a charge to cover the printing and delivery etc. We do hope to obtain government backing and sponsorship for this area of our work in the near future. Last year we had a 'Survivors' Panel' at our first conference and one is planned again for this years conference in October which will again discuss the effects of PSS to raise awareness in health care professionals and the public. We do also discuss PSS and try to help survivors through their rehabilitation period at our various support groups already up and running, but it will take time, funding and help from many volunteers and the government to raise awareness around all the UK about the very real after effects of sepsis. Be reassured we will keep trying and if there's anything else we can do to help you through your recovery, do just ask. BW, Libby.
  3. Hi Alimac, I'm glad to here you're feeling a little better now. You're certainly not alone in feeling anxious about getting sepsis again and it's completely understandable after what you've been through. Unfortunately, it is common to get a few further infections following sepsis, especially when the original sepsis developed because of a UTI. Be reassured though, subsequent infections are usually milder than the initial sepsis experienced and generally respond to treatment quickly. Knowing the signs of sepsis will protect you, as you can get medical help quickly if needed. I'm working a clinical shift tomorrow and won't finish until late but there should be a member of the support team in the office. Our new number 0800 389 6255. Do get in touch. BW, Libby.
  4. Hi, I've spoken to Dr Daniels about this for you and he said Ludwig's Angina is a rare infection rather than a rare type of sepsis. As with all sepsis cases, it's the body's over reaction to the infection which causes the devastating effects. If we can be of any more help, do contact me on libby@sepsistrust.org. BW, Libby.
  5. Hi Skyehammer, I'm hearing from more and more survivors who are experiencing irregular heart beats after sepsis and as the heart is often affected during the acute illness (as in your case), I can see the connection. I would certainly mention it to your GP as it would be advisable to have an ECG just to check things out. Often the heart rhythms you can feel are completely harmless but it's as well to know, so you know what's going on. If you go dizzy at the same time, it can be an indication the heart rhythm is dropping your blood pressure which may need medication to sort it out. With regard to the breathing problems - when sepsis affects your lungs, the air sacs (where the oxygen and carbon dioxide are exchanged in breathing) can become scarred from the inflammation which means they don't work as well afterwards. When you change position or lie down, different air sacs in different areas will be used in the lungs, so if there is any scar tissue in one area, this can make you breathless. The lungs also rely on your circulation to work properly to pump the oxygen around, so again if that's a little impaired when you're lying on one position, this can make you breathless. Again, do go and have a chat with your GP - it may just mean changing you sleeping position but it's worth finding out and often simple changes can make a world of difference. Take care, Libby.
  6. Hi Skyhammer, Thank you for sharing such an inspiring story and I'm glad to hear you're starting to feel better now. Sepsis is life changing; the acute illness only being the start of the long journey back. I hope life will be a little easier on you in the future. Do keep in touch and let us know how you progress. If there's anything we can do at the UKST, just give us a call. BW, Libby.
  7. 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.
  8. Hi Michelle, I hope you received my message and suggestions. Sorry, I was abroad when I received this post on my phone and the wifi was dreadful at the hotel. Do let me know how your appointment went with the specialist. BW, Libby.
  9. 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.
  10. Hi Mmoo, I'm being contacted by a significant number of survivors who are having problems with irregular heart rhythms a few months after sepsis. They can either be too fast or an irregular beat (I haven't heard of any going too slow yet) - the irregular beats feel a bit like Morse code when you check your pulse. It would be good if your GP referred you to a cardiologist just so they could 'fine tune' your medication which may help ease your tiredness, as one of the effects of Beta blockers is to make you feel tired. Do let them know if the arrhythmias keep making you dizzy because your blood pressure may be dropping when you get them. Often happens when you bend down. Be reassured they can usually sort all this out quite easily with medication. BW, Libby.
  11. Hi Orange, I wish I could tell you that both the fatigue and the memory loss will improve really quickly but the reality is, it will take quite a while for things to improve. Some survivors do return to normal within a few months but most take up to two years to return to their 'near normal' selves. A lot depends on how fit you were before your illness, the severity of your sepsis and the length of time you needed to be in hospital. But there are things you can do to make your life a little easier. We have a Fact Sheet on Chronic Fatigue which you can download from our survivors webpage which has some suggestions that usually help or I can send you a paper copy, if you prefer. The short term memory will be more difficult to help with. Every survivor has to work out what works best for them. Writing important things down usually helps or using the 'mobile phone reminders' each day to jog your memory, and as Gillian says, try not to put yourself on the spot too often - not easy in your job. It will improve in time but may not get back to quite what it was before your illness and it will be incredibly frustrating and tiring along the way. Sorry, I can't give you more cheerful news but if you know what to expect you can manager things better. If we can help in anyway, just phone the office on 0800 389 6255. Take care, Libby.
  12. Hi Jenna, I'm so sorry about your mum. Loosing a parent is very hard even when you're expecting it, but for it to be such a shock and not to have your dad around as well, will have made it so much worse. Even though we're grown ups and can function well on our own, your parents are still your guiding light when life is hard and our support system, no matter what our age. I hope you and your sister can lean on each other to get through this. Being a nurse, we think we should be able to deal with anything but just let yourself be a daughter who's just lost her mum for a while and let yourself grieve. If it would help to talk to a support advisor, do just ask and we'll arrange a call for you. Phone 0800 389 6255. I'm not an expert on ovarian vein thrombosis but I know it's a relatively uncommon condition which can lead to sepsis. Abdominal and / or pelvic pain and fever are some of the symptoms (and a possible history of pelvic thrombophlebitis and clotting disorders - which isn't always obvious). If left untreated the inflammation leads to infection and sepsis, which may explain why your mum developed an URTI / chest infection and sepsis. Take care, Libby.
  13. Hi Alimac, What you've described is all very normal for patients recovering from sepsis. About two thirds of survivors experience some long term physical or psychological problems - known collectively as Post Sepsis Syndrome (PSS). These include anxiety about what happened, vivid nightmares and flashbacks to when you were ill. Do you find something in particular seems to trigger these memories? Mark's suggestion about visiting the Critical Care Unit you were treated in may well help settle some of these thoughts because you'll be able to see where you were and what the objects actually were around you, so it may help distinguish reality from your flashbacks. We have a couple of booklets you can download from our website on the survivors page, called Sepsis:A Guide for Patients and Relatives and Sepsis: Survivor's Information which you may find helpful or if you'd like to have a chat about how things are, then call our office on 0800 389 6255 and ask to speak to the support team. I hope this helps. BW, Libby.
  14. Hi Leeny, Many thanks for the information. It'll be really helpful with my work on PSS. BW, Libby.
  15. Hi Both, I'm not a survivor (my background is in critical care nursing and working for the support side of the UKST) but I can appreciate how scarey it must be to think you may go down with sepsis again the next time you have an infection. Many survivors and their relatives contact me with such concerns. Fiona you are right, a percentage of survivors (exact numbers aren't known yet), do have a weaker immune system for several years after their acute illness and either go down with more, usually milder episodes of sepsis for the same reason, or they catch every virus or bug going around their area. This affects both adults and children.There are plans to do some research on developing a vaccine for vulnerable post sepsis patients but this will take a while yet to yield any results. ​ What I would say Leeny, like Fiona, is know the signs of sepsis and if you start to feel really unwell, go down to get yourself checked out. If you can't get an appointment with a GP, then go to A&E, don't wait. If it does turn out to be a false alarm - then no harm done. If either of you would find it helpful to talk to someone at the UKST, just phone our office on 0800 389 6255 and ask to be referred to the support team. There are several booklets and factsheets on our 'Survivor's Page' on our website which you might find useful. I'm presently looking into how many patients experience Post Sepsis Syndrome (common long term physical and psychological problems experienced after sepsis eg. exhaustion, nightmares, anxiety, insomnia etc) if they were treated and nursed on a ward, rather than in Critical Care. Can I ask if you were both nursed on a ward and any other the affects sepsis has had on you? If you'd prefer to send me an email -I'm on libby@sepsistrust.org Many thanks, Libby.
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