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  3. I am a new member seeking advice. My husband has bladder cancer and underwent a Radical Cystectomy with Ilual Conduit in June. I am collecting him from hospital hopefully today after suffering Sepsis twice in the last 3 weeks, both times being hospitalised. What advice can anyone give to prevent this keep happening? Doctor yesterday said that due to his 're-plumbing' this is likely to keep happening. Any advice gratefully received.
  4. I had surgery to remove the metal work from my wrist because they think i am allergic to it, what was ment to be an hour operation lasted over 4, i left hospital the next day, 2 days later i was still in alot of pain and went to the local out of hours, where i was given morphine for the pain. 3 days later i was not feeling 100% my chest felt a little tight, so my sister took me down to the walk in centre where the nurse took 1 look at me, and said i don't like the look of you, the sweat was pouring from me, she got another nurse to take a look at me, and said i needed to go to the local hospital as they both thought there was a chance that i had sepsis. Once i got to the A&E department they took bloods from me, and hooked me up to a drip to get fluids and antibiotics into me, i was kept in overnight and then released the next day, i went to my orthopedic appointment on the friday, and they where not happy with the way i was treated, they put a plan into place that if i was not feeling well i was to go straight there and they would just treating me according to the plan in place. I have been having weekly appointments at the othopedic apartment to check on my wrist and the wound. I am concently tired, i can not control the sweating, i am scared that i might get another infection, and get the sepsis again, i can not believe how ill i have been, but when people ask me how i am feeling now? i can not answer, as i do not know how i feel
  5. You've been through the mill a bit both from the surgery and the sepsis and while my experience was slightly different to yours I did have to learn to walk again due to muscle waste . It will take time before you are fully recovered but you're showing the determination required for this to happen . When sepsis struck back in 2012 my kidney [ I only have one ] and lungs failed at our local hospital - I was flown to Paisley and within days my heart stopped and continued to stop . I was in hospital for a total of 3 months [ I developed pneumonia 4 days after being released from hospital so back I went for another 2 weeks ] . The Physios helped me with my walking but it would be a while before I could get up our stairs so my wife made our spare room into a bedroom , even longer to get up the steps which lead up to our track - however , I had had an operation on my back in 2011 so my circumstances were slightly different . Four weeks isn't a long time especially after what you went through , take things easy while doing your best to build up your leg muscles once more , I would say another month and you'll see a lot of improvement . Best of luck , Katherine .
  6. Hi Sallp, Sorry to hear you have been so poorly and are still struggling with recovery from sepsis. You may find it helpful to discuss your recovery with one of the support nurses from the UK Sepsis Trust, you can talk to them about how you are feeling and ask any questions you have. Sometimes it can be very helpful just to talk through what happened and how you are feeling with someone in confidence who understands sepsis and sepsis recovery. Healthcare professionals are not always good at looking after themselves and taking the time to talk about how they are feeling. I have provided links below to how you can contact the team and to our sepsis recovery booklet. Sepsis Support Team Sepsis recovery Booklet
  7. Hi, There are so many variations of the effects of sepsis. I am finding it very difficult to come to terms with my experience and feel that I should stop thinking about it. To cut a long story short I lost 5 days completely. I am gradually remembering snippets of that time, such as nurses telling me they had to take all the blankets and put a fan on. I am medical myself which seems to make it all worse as I know how the ‘sepsis six’ is drummed into us. After 24 hours of not really knowing anything (I do not remember the journey home from America to UK) I don’t remember picking up the car at Heathrow or arriving home. My husband took me to the doctors the evening we arrived home. My temperature was 38.6, I was having rigours, my pulse was 132 the GP told me it was a UTI. Apparently I told him I thought it was pyelonephritis and was he sure (some part of me was working although I do not remember). By the next evening we saw another doctor, my temperature was 39.8 and I was immediately admitted to hospital. I had pyelonephritis, pneumonia, my liver function tests were terrible, I needed blood transfusions, I had a pancreatic stent, I have a splenic arterial aneurysm which they think has been caused by the infection. 7 months later and 3 operations I have managed to return to work very part time but I am exhausted. I feel afraid that this tiredness will not go. I miss my old life where I was super fit. My liver is still far from normal which has knock on effects such as my serum ferretin which are very high making my joints and muscles ache. But I am alive, my poor husband was told there was a good chance I wouldn’t be. I am sure my brain is a little slower but I am hoping all will return to normal. How long do you think this will be? Has anybody been through similar who would tell me there recovery experience. I keep reliving it and try to fill in the gaps. My husband tells me I must move on but I cannot quite believe it all happened.
  8. Hello there. First of all I am sorry you havent had feed back. Normally a notification comes up on email. I havent had one but really not sure if all members get. I haven't been on forum quite a while due to many appointments and problems so would have replied. I do hope you have some help or answers by now but cant relay to your husbands as I'm not familiar with that. Isn't it so very frustrating when the patient or carer/family cant get answers or help. THAT I can relate to as my GP's say they dont know what to do and i feel I dont want to bother them anymore. Is there anyone on the cancer side you can talk to. There are so many helplines its difficult to know which is the most helpful for you and your husband. As for his feelings i cant tell you how many times I have said my body cant take anymore. Its said when you are most tired because thats how we feel but somehow tomorrow is another new day. I do wish you both well and hope someone out there can relate to you both. Take care of yourself too Best wishes Isabel
  9. Good afternoon. I raised an issue a few days back now and have received no comments to date. Last evening my husband became unwell again, only ten days home after being in hospital on IV antibiotics for nine days and early admissions to. In all since January he has had three UTI's, a chest infection sepsis and now yet another UTI all of which have been treated with antibiotics. Is neutropenic levels have been very low then improved slightly to go back down again yesterday. We are both worried about this ongoing situation and he has just made a statement which shocked me to the core. He said that he wonders how much more his body can take and whether or not he will ever get well again. I cannot give him an answer to this. The medical team just keep saying that they will not be surprised to see him in A&E again (joy) and that all they can do is IV antibiotics yet again. A long term catheter and a stent from his right kidney are 'aliens' in his body but he needs them both. The reality is without the catheter he will have infections because his bladder does not empty fully since radiotherapy but with the catheter and with low white blood counts he will get infections. It seems a no win situation. Has anyone else suffered like this and had an alternative to the catheter suggested? If not which will be the safest option ? Catheter in or out ? We have an appointment with the urology team in two weeks but two weeks is a long time where infections/sepsis is concerned.
  10. Good afternoon all, This is my first post to this forum. My husband has had sepsis twice in the past 9 months as he has been neutropenic after chemotherapy for bladder cancer. On his most recent admission to hospital, the urologist stated that he would not be surprised if he was admitted again due to the fact that he has a stent from his kidney and also a permanent catheter. This is slightly worrying and we find ourselves watching his temperature as we were also told if it gets above 37.5 that we have to go straight back to A&E. This last admission he had nine days of IV antibiotics four times a day but has now been told that he cannot be given anymore at this time. Has anyone else out there had this kind of issue either after chemotherapy or when being neutropenic ?
  11. Hi Maz People are often surprised by their recovery and how long this can take. You can talk about your recovery to one of the sepsis support nurses at the UK Sepsis Trust . They are all trained nurses with a lot of experience of sepsis, you can discuss what has been happening and have the opportunity to ask questions. If you select the link below you will find out the various ways you can contact them. UK Sepsis Trust Support Larry
  12. Hi Natalie, New to this and just reading your story and sorry to hear how you are feeling. I feel much the same as you, I developed an infection and ended up in hospital after a few days of struggling and I wasn’t even sure why I was getting the treatment at first until I realised it was sepsis and read up about it. I got treatment very quickly and only stayed in hospital for a week and took a further 5 weeks off work. I have been extremely tired since this and really struggle getting through the day without wanting a lie down. I am always worried about getting sick again and I didn’t realise how much it had an effect on me until I visited a friend in hospital last week and I have never felt so anxious. But again like you always feel like I’m being dramatic but it’s good and not good to hear other people are feeling similar. M x
  13. 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.
  14. I've just discovered this forum after scrolling through Google looking for answers. On the 20th January I was admitted to hospital severely ill with a burst appendix and ruptured bowel. As a result I ended up with sepsis and pneumonia and induced into a coma for 10 days to recover after surgery. My kidneys began to fail and my immune system would not work properly. Just a couple of days after I woke up, I was rushed back into surgery when the sepsis had returned. I was then subjected to a further 2 operations to close my stomach and ensure everything was healing correctly. I spent a total of 7 weeks in hospital, including 5 weeks in Critical Care. As a result, I have lost a lot of muscle mass and currently going through physio to build up my strength and allow me to walk independently again. I have nerve damage in my foot, and my breathing still isn't 100% as my lung collapsed following removal of the ventilator at one point. I have been out of hospital for 4 weeks now and still very weak, walking short distances on crutches but getting tired easily, I'm constantly exhausted, in pain, spending most of the days asleep and finding that I get upset very easily. I joined this forum in the hope that someone has been through a similar experience and would be able to give me some idea of recovery times? And whether a full recovery should be expected? Is how I'm feeling normal? Thank you
  15. Hi all, I survived Sepsis in December 2012 on my birthday of all things! It's approaching 4 1/4 years now, and I was directed here and to support groups by the volunteer co-ordinater as she advised I need to process emotional trauma and get my head in the right place to volunteer so I don't break down telling my story. This is what happened when I shared my story and watched it played back as part of my uni assessment in playback theatre, where audience members volunteer to share their story in front of an audience. I shared it at the very end after another audience member shared a difficult story wanting to raise awareness, proving that not all performance sharings were happy/funny/joyful. I couldn't write my essay, I was a mess and need to try and process some of my feelings on here of emotional pain and upset, of confusion, bewilderment and loneliness with it all. Thanks all for reading, Holly x
  16. Amber, after reading your post and experience I totally feel for you. I am left with extreme fatigue and flashbacks too, I miss my old life and energy. I'm also confused and frustrated and don't really know if and when I'll feel better again but it's good to know we're not alone in this. I don't really know what else to say to help you but I am sending you a virtual hug! Natalie
  17. Firstly apologies for the delay in responding life has been busy and I am always so tired once I have gotten a chance to sit down I just fall asleep. But most importantly thank you so much everyone for the support and encouragement! I don't feel so alone in this fog of fatigue! I'm arranging to see my GP on Thursday and have printed the Sepsis Survivors booklet for him but not sure what else to do? I think I'll ask for full blood work to be carried out to rule anything else out and I had read on the forums about vitamin B12 injections which I'm not sure if they'll entertain?! Thanks again guys I hope you are all doing okay. Natalie xx
  18. Hi Natalie Great advice and support from the forum members as always. I am sure you can see all the problems you are experiencing are very common during recovery. The poor understanding and awareness of sepsis recovery can make it feel a very lonely place to be at times. We have a helpline at the Sepsis Trust, it is manned by trained nurses who have a lot of experience caring for people with sepsis and a good knowledge and understanding of recovery. You can call and talk to them about your recovery and ask questions you may have. They can be contacted Monday - Friday 9 -4 pm by calling confidential freephone number 0808 800 0029. Sepsis Helpline
  19. Thank you Ian, Kind of smiling here. Just got up from laying on the couch. My deadline to complete my project today, got pushed to Friday, so I thought I'd take a break knowing I had more time. Still filled with guilt (working on it, but admitting it so others who might feel the same way can get an example of how knowing about something, doesn't mean we can easily live it out (like taking it easy, when all we want to do is get back to what our lifestyles used to be like.) I DO still have such a hard time understanding and accepting the difference between "feeling like I'm being lazy", being tired, exhaustion and fatigue. Ironically, after talking with my Physical therapist, he is really supporting my understanding about feeling fatigued vs my not trying hard enough to go longer on the treadmill. Update: The great effects I felt from my B12 shot last week feel like they've worn out. Looking forward to Friday for another. I'll speak with my new GP to ask her about this. Thank you again! Richard
  20. Hi Richard thanks for the update. sounds like your asking lots of questions which is good, but please dont be disappointed with yourself in any kind of way, try to bear in mind what you have been through. It took me a long time to understand the difference between tiredness . fatigue .and exhaustion. and post sepsis i was exhausted in a way i had never been before. i can really understand your frustration. but try not to push yourself too hard at this stage if its leading to diizzyness at that point we start to risk injury and all that can mean.Really glad you put your foot down about not trying hard enough, i have met many doctors who dont seem to know much about sepsis let alone physios. wishing you recovery. kind regards ian
  21. Hi Natalie and welcome to the forum. firstly you are certainly not any kind of drama queen , i have read from other members of here who contracted sepsis post childbirth, it might be worth reading arround when you feel up to it. in the meantime you might find it helpfull to speak to one of the sepsis nurses 0808 800 0029. apart from this forum and the members on it they were the only source of information on sepsis and recovery that we could find at the time. my sepsis was post surgical and i have had to learn the hard way to manage my expectations regarding recovery. in the beginning i pushed myself to hard and then paid the price. knocking myself out for a week or more only to have to start again. i know it may not feel like it right now but you are doing really well. you both survived ,and thats wonderful news. recovery takes time and there will be setbacks along the way. but there is help available .you are not alone in this anymore. kind regards ian
  22. My Pleasure... I remember (after reading a lot of posts here), learning that I wasn't the only one. Reading more, I began to learn that I was doing well compared to others. Then what I learned was not to compare my recovery to others! That became very important. We are all different, different reasons for contracting Sepsis and different reactions to it. I had a long work day the other day with very little rest... The result were symptoms being more pronounced and needing LOTS of rest... (I do have a hard time listening to my body and resting... (Impatience is a hard thing to set aside when you're remembering how you used to feel before this and just want to press a magic button to "reset" to normal.) I do hope you're reading as many threads here as possible. LOTS of great information from people with a lot more experience than I. I'd also suggest printing some of the downloads from this site to take with you to your GP. I did and she very enthusiastically accepted them to read. Wishing you well, Richard
  23. Thank you so much for your response Richard it makes me feel like I'm not alone and not going crazy which in itself is helpful. It sounds like you've had a terrible time and are still experiencing difficulties which I hope get better for you with time. I guess this whole thing does take time and we will have to accept that. Thank you again for your kind response I really appreciate you taking the time to read my story and it reassures me a little. I'm going to speak to my GP and go armed with as much information as I can on PSS. Natalie
  24. Hi Natalie, I need to keep this reply short as I'm just taking a couple of minutes off waiting for glue to dry. If you read my post just above yours (5 months since kidney surgery), you'll see that you are not alone. I TOTALLY thought I was being a drama queen, that my fatigue was me being lazy and that I had turned into a hypochondriac. My GP knew of sepsis, but not enough to address it and denied therapies I felt were worth a try. I ended up switching doctors. First visit was better, but she did not have in depth knowledge of what we are going through. She at least listened, ordered blood work that other doctors had not and received the sepsis document downloaded from here as homework to read before my next visit this Friday. I pushed myself on the treadmill this weekend (only 4 minutes before I had to stop from pain.). I've felt major fatigued since then... Read the posts here and take the advice from others with experience over longer periods than I regarding patience, giving yourself a break and (I think, most importantly), grace to recover. Wishing you the best, Richard
  25. Update: I went to the new GP. Feeling better with her. She knows a "little" about Sepsis, but was eager to receive the handouts from here to study and learn more. She agreed to the B12 shots and another to help with weight loss (Considering my inability to exercise)> Was shocked at how much better I felt within 6 hrs of the shots! I thought it might be a placebo thing (I want it to work, therefore, my brain tells me it is working), Either way, I'll take it (I know the mind is a powerful thing and can (to some degree) heal ourselves.) The next day, still felt a little better, but several days later, I'm feeling the same as before. Going in on Friday for another B12 shot. She asked me a lot of questions no one else had before (This after handing her all my test results and blood work results). She ordered more blood work for things no one else had investigated, and I'm happy for that. I've been pushing myself doing exercise and yesterday, I sat up after doing some strenuous stretching and got REALLY dizzy, the room was spinning, to the point that I got scared. I laid down and felt better, but I sat up several times since and still had some dizzy feelings. I talked with my physical therapist about how very disappointed/frustrated I was about his not understanding Sepsis and accusing me of not trying hard enough. We settled that issue (I really had to set my foot down hard and fight for my position.). He had me try something when I walked: When my back pain came on, to lean over with my hands on my knees and rest for one minute and see if I could walk again with out pain. If the pain dissipated, there was a good chance my pain might be coming from a bone spur. Well, I tried, but so far, I really can't tell. I cam back here reading more, searching for more key words like "Fatigue". I had associated my using and identifying with the word "Fatigue" as being lazy... After reading more here this morning, I'm starting to accept that my experiencing fatigue is part of the post sepsis condition. I will tell him today and see what happens. I'll report back when I learn about the new lab results (My feeling about the new blood work, is positive, searching for other "possibilities" to rule out or look into. Still frustrated... Counting the time since my last surgery it's been 3 months and almost 4 weeks. Based on my readings here, this is considered a very short time period, so that's tempering my frustration. My wife accepts the fatigue and points out all that I've accomplished since my surgery. Since the beginning of this year, I've completed 4 new prototype projects and have earned almost the same as I did within a two month period as before this whole ordeal. Not a great way of measuring "recovery", but I can identify with it and seeing this is helping me lower my frustration levels. I have a deadline this coming Friday and it's going to be tight, but I'm promising myself to pace myself no matter the stress level to meet this deadline. I recently watched a documentary on Netflix (The Chef's Table), with an episode on the Chef Sean Brock... One of our favorite Chefs... We saw a video on him a year ago and all I could think of was "I want to be like him!" Well, as it turned out, I WAS like him! I LOVE what I do for a living and always joked about what do you do for fun/relaxation when your work derives me so much "pleasure"... Well, he came really near death working so much ("Because he "LOVED" what he did!). It hit home so hard!!! I saw myself like that and coming so near death (still hard to accept), and fell into tears for a few hours.... Still taking long breaths and thinking carefully about how hard I push myself... Thanks again for being here... I'm going to read a little more this morning and then get back to work, being grateful that I "can". Best, Richard
  26. Hi, I've come across this forum so I am hoping someone here can give me some advice or just listen as I feel like I am losing my mind?! I contracted Sepsis during the birth of my first baby in September 2017. I was Group B Strep positive and knew this at the time however my local hospital did not act on this and I was left 24+ hours with leaking waters not progressing to labour. I was found in my hospital bed the morning following my admission semi-conscious with tachycardia, high temperature, etc and it was determined I had Sepsis. I was treated very quickly IV antibiotics, fluids, oxygen, had numerous blood tests and swabs taken and was looked after by a team of doctors and midwives. I thankfully improved a little and was able to give birth however my daughter was born with GBS infection and Sepsis. Thankfully she made a full recovery with no lasting effects. We spent a week in hospital on IV antibiotics and I continued antibiotic treatment at home for a further week. Healthcare staff did not really tell me what was wrong with me or what was going on and I had to learn myself from reading my notes on release from hospital. It scared the life out of me and feel there was negligence which I'm currently addressing with my local NHS Trust. I somehow got through the first 6 months of my daughter being born I completely focused on her and tried to forget about our ordeal as I didn't want to ruin that precious time. Of course it hit me 6 months later I was a complete wreck needed counselling and was diagnosed with PTSD and anxiety as a result of what we'd been through. Since the Sepsis I have been so tired and lethargic, dizzy/light headed, headaches, feeling generally run down, brittle hair and nails, dry itchy skin, random joint and muscle pains. I have PTSD and anxiety with flashbacks, nightmares and insomnia. I never suffered with my mental health before. I was an extremely happy positive person with so much to look forward to and I understand I still do and count myself very lucky that things did not turn out worse. I don't feel depressed however I know I am suffering from anxiety over silly things. I am worried about going to my GP about this because I don't feel they will understand. I've had bloods taken and my blood pressure monitored to rule out any issues that may be causing some of my symptoms. I know tiredness comes with being a new mother but she is now nearly 18 months old is a very settled child and has slept 12 hours through the night since she was 7 weeks. I came across this website whilst google searching and feel I may be suffering from Post Sepsis Syndrome? I feel like no one will understand when I try to explain how I'm feeling and I don't want to come across as a drama queen. I didn't spend any time in ICU. I was in the right place when I contracted Sepsis and I was treated very quickly so I'm not sure if this rules me out for PSS? If you've managed to read this thank you! Natalie
  27. Ian, Thank you so much for your response. I came here not wanting to hear" it will take time... just rest"... I'm smiling hearing you share this as, something I still haven't grasped, is that it really is relatively early regarding recovery... (Hard to accept as with most of my life including designing prototypes, the thing most people respond with is: "You accomplished THAT in how long?!?!?! referring to projects that would normally take others, much longer... My personality, skill sets, intelligence ext had always lent myself to getting a lot done fast... I am realizing that I am applying these same expectations to recovering from Sepsis... (Sigh... and quietly laughing at myself.) I think the biggest impact I received from your response was that I am "still in my early days"... That sunk in... Thank you! Part of my frustration is dealing with my primary doctor, who although knows "about" Sepsis, is not really equipped or willing to help as much as I ask... (Wouldn't try vitamin B12 shots because my B12 results were right in the middle.) She wouldn't consider the circumstances or symptoms. My endocrinologist is very knowledgeable and wants to help but can't because of office protocol... she told me to seek help from my previously mentioned primary care doctor... My new physical therapist is a "sports-related" physical therapist, very masculine and tells me to just suck it up and points out that I'm not trying (after going to tears after 6 minutes on a treadmill because of the pain). I have an appointment tomorrow morning with a new primary care doctor at a new clinic (leaning more towards holistic medicine who understands Sepsis and is willing to follow my lengthy research to try B12... She also suggested rapid/aggressive weight loss injections as she sees my physical limitations hampering my exercising to loose weight and the extra weight I've gained since September getting in the way of my physical therapy trying to reduce pain. (Sure sounds like a quite a circular, never ending circle of dead ends... I'm praying that tomorrow will be a new beginning... even if it doesn't work, at least I feel mentally more optimistic about trying something different. I will most definitely report back in with results from my efforts (B12 etc...). Hopefully the results will be positive and may offer hope to others here... Even if it doesn't work, it's still something to share along with everyone is different and what might not have worked for me, might for others. Again Ian, Thank you for sharing! You: " at the risk of repeating what you already know...give yourself the time that you need...be good to yourself....rest when you need to.....take whatever help is available.just one step at a time." This struck a positive and encouraging chord and put a smile on my face. Best, Richard
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