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  2. This is scary close to so much I had and am still dealing with. Right down to the nerve damage in the foot which is a motherfucker!
  3. Hi Scott thats alot to deal with, but with patience and time your still here .wishing you the best. kind regards red
  4. Hi Scott - a massive blow indeed - and you made it!! Seems the sequence of those events matched my own - and many others I'm sure Welcome to the other side and thanks for sharing here on the Forum Step by step ... M
  5. Good on you Scott. Wishing you well moving forward. So many great songs with 'Keep on keeping on'. My favourite is Primal Scream's Country Girl
  6. In addition to aching all the time I have constant rage. My breathing is still sketchy as sepsis wore a hole in my lung collapsing it, my equilibrium is shot and everything seems like a massive effort. Except for cooking which I love to do and that chills me out. My wife is utterly remarkable and her support has been invaluable to me. (No booze for me either, but I quit that in May 2018).
  7. My name’s Scott. On June 1st 2019 I was admitted to hospital with breathing difficulties. This was in fact influenza which developed into double pneumonia. Sepsis wasn’t far behind. It tore a hole in my lung the size of a shotgun wound. It shut down my kidneys, liver and stomach. I had a higher percentage chance of death than survival. But survive I did. I went to sleep June 1st and came back to the land of the living in July on the back end of a month long coma. I still have Post Sepsis Syndrome and have a long road yet to go. But I’m still here. そして、私は死の殺人者です...
  8. Hi, I am a university Product Design Student at Loughborough University and am doing a final year project on monitoring infections to prevent the onset of sepsis. And would be amazing if could fill out my survey so could understand some insight into infection prevention and any issues anyone faces. Should only take 5 minutes to complete. https://docs.google.com/forms/d/e/1FAIpQLSfJJC1uSEKyhf79itF0FcShaOjs3XdWh9KatWPuGKD41urIbA/viewform?usp=sf_link Thanks Jack
  9. Joe, I get the tired bit myself and many others would call it exhaustion. Like Red said, you've got to listen to your body and take time out to rest when needed. My taste was all over the place. Everything was salty and I could only stomach bland foods. Enjoyed a curry before but found even the mild ones too hot. I've always enjoyed a pint but the taste post sepsis was awful. The only drink I cared for was lager and lime, where as before I was a real ale man. Now - love my curries, always up for a pint (Blonde, Golden) and now eating out which I avoided for being wasteful. Worst thing for me was not being able to add up in my head, mood swings that hurt my loved ones and not instantly listening to people. It was as though I had to tell my brain to listen rather than it being automatic. Now - still get frustrated and my mood can be low but I sit and speak with my wife and share with her how I feel and this has been a great help to her understanding. Best thing I did was to write a diary. In it I'd put pain level, activity, mood, upsets and anything I felt positive about. When my mood was low I could look back and see that I was improving.
  10. Joe

    few months on...

    Wow, thanks everyone for replying to my post so fast. They are really nice comforting words and I have found by sharing my story, it has lifted abit of weight off from my mind. Seems incredibly strange reading my own story back. Looking back at the year there has been a lot of stress. I have realised that I have kept it bottled up from friends and family because I have felt silly to express and go on about myself. I really appreciate you guys taking the time to write back and it's been nice to relate with others in the same/ similar position- reading other people's experiances and how they have coped. It's really underestimated and I really hope you guys stay healthy and continue to become stronger. I will read up on the group. Thank you Ian, Larry and Red squirrel. Have any of you guys got any side effects? I have had to make a few adjustments in my life. I can't drink alcohol anymore or eat a fatty meal. Not so bad but I find a social drink quite nice and going out having fun is something that I miss ( I never use to do it much anyway) and I get tired with associated back pain. Could be a lot worse.
  11. Hi Joe i hope you may feel some reassurance from the replies you have already received. like you i worked in a physically demanding enviroment and to be honest i underestimated sepsis not surprising really as i knew nothing about it. Its taken me along time and with a great deal of resistance on my part to understand and learn about recovery and what that means for me.push myself too hard and i pay the price.recovery will come but can be painfully slow and with setbacks. but at first it can be important to keep things simple.read as much as you are able both on and off this forum.be good to yourself.rest when you need to.and take whatever help is available. the sepsis helpline is a fantastic resource and offered great support in that first year when i just needed to talk to someone who understood. kind regards ian
  12. Hi Joe Sorry to hear you are having such a difficult time, all of the things you mention in your post are very common experiences of sepsis survivors. Sepsis recovery is poorly understood and many of the problems experienced are unexpected and hidden from those around you. It can be helpful just to talk things through with some one who understand; the sepsis support team at the UK Sepsis Trust consists of trained nurses who have a lot of experience of sepsis and the many problems that can be experienced during recovery. You can contact them by calling 08088000029 Monday to Friday 9 -3 pm. You will be able talk to them about your sepsis and recovery and ask questions that you may have. We also have a support groups that meets in Hove, meeting others who have experienced similar problems can make recovery feel a less lonely process, the support team can tell you more about the group if you are interested. Sepsis Support.
  13. My best wishes on your journey Joe. From what you write you are doing well mentally and this will see you through the tough times you discuss. I wasn't as positive early doors and the comments of 'you're lucky to be alive' etc fell on deaf and angry ears - I didn't feel lucky. Now much later I appreciate I am a lucky one and proud to be a member of the survivors group. Keep talking and your idea of fundraising will help you just as much as the charities. Work wise I wasn't the same but that doesn't have to be a negative. For example I was more empathetic to my colleagues and my slowing down enabled me to be a better listener and I found I didn't make as many mistakes as my gun ho previous self. Your body took a right bashing and it will take time to recover but I have no doubt that recover is what you'll do Mark
  14. Hello everyone. Just wanted to share my story. I'm a bricklayer. 22 years old. Very healthy and active. Before all of this happened, I had no idea what sepsis was and wasn't aware of the impact it would have on my life. I went in for a routine ACL/mcl knee operation. The first one was fine which was in late January 2019. The second operation was on March 11th. I woke up from the operation instantly unwell with a lot stomach/back pain. I was transferred to Brighton during the early hours and it was descovered that I had sepsis, pancreaitus and pneumonia. I was in hospital for 2 1/2 weeks which was the worst time of my life. My whole family at one stage came to visit late at night out of hours and everyone was crying. I really felt helpless as I kind of gathered the dangers of sepsis and how my life could have come to an end. ( I was heavily drugged up throughout my time there). I thought I recovered to an extent, then a few months later I suffered a pancreatitis attack and caused me to be in hospital for another week. This attack has taken its toll on me. They don't know the cause, I don't drink, smoke and I eat a very low fat diet. The second time has really effected me it's almost been a year from the very start. I'm a bricklayer/builder and I have really lost my confidence to do my job that I use to love. I always seem to be tired and I have had to do rehabilitation for my knee and learn to walk again on top of everything that went on. I have found it exstreamly difficult to get back to things. I really feel like a different person and I never thought something like this would happen to me. I'm trying to get back to work but it's really hard at the moment, mentally and physically. Most Employers don't understand that I'm slower at my job and I'm finding my way again. I might have to do something else. I really feel for people who suffer from this and I really do feel lucky to be alive. I do hope to do a charity event for sepsis when I feel a bit better. Thanks for reading.
  15. Hello everyone. Just wanted to share my story. I'm a bricklayer. 22 years old. Very healthy and active. Before all of this happened, I had no idea what sepsis was and wasn't aware of the impact it would have on my life. I went in for a routine ACL/mcl knee operation. The first one was fine which was in late January 2019. The second operation was on March 11th. I woke up from the operation instantly unwell with a lot stomach/back pain. I was transferred to Brighton during the early hours and it was descovered that I had sepsis, pancreaitus and pneumonia. I was in hospital for 2 1/2 weeks which was the worst time of my life. My whole family at one stage came to visit late at night out of hours and everyone was crying. I really felt helpless as I kind of gathered the dangers of sepsis and how my life could have come to an end. ( I was heavily drugged up throughout my time there). I thought I recovered to an extent, then a few months later I suffered a pancreatitis attack and caused me to be in hospital for another week. This attack has taken its toll on me. They don't know the cause, I don't drink, smoke and I eat a very low fat diet. The second time has really effected me it's almost been a year from the very start. I'm a bricklayer/builder and I have really lost my confidence to do my job that I use to love. I always seem to be tired and I have had to do rehabilitation for my knee and learn to walk again on top of everything that went on. I have found it exstreamly difficult to get back to things. I really feel like a different person and I never thought something like this would happen to me. I'm trying to get back to work but it's really hard at the moment, mentally and physically. Most Employers don't understand that I'm slower at my job and I'm finding my way again. I might have to do something else. I really feel for people who suffer from this and I really do feel lucky to be alive. I do hope to do a charity event for sepsis when I feel a bit better. Thanks for reading.
  16. Thank you for the advice, i spoke to them and got the recovery booklet before i did this post, i am hoping to get to the meeting at knutsford
  17. Hi, all the thing you describe are commonly experienced when recovering from sepsis, most people are surprised at how they feel and how long it can take to recover. I have provided a link below to some helpful information on sepsis recovery. You may also find it helpful to chat to one of the nurses on the support team at the UK Sepsis Trust, you can ask them questions and discuss your concerns. Contact them by calling 08088000029. Sepsis Recovery booklets
  18. Recurring infections following sepsis can be a problem for some sepsis survivors. A few of those people may then go on to develop sepsis. It is important to take measures to minimise the risk of getting infections such has good basic personal hygiene and hand washing, strict hygiene when caring for any indwelling devices such as urinary catheters, caring for any cuts and wounds and seeking medical attention when you suspect you may have an infection. Most important is to know the signs of sepsis and if you are worried that you may have sepsis 'Just Ask Could it be Sepsis' I have provided a link below to some helpful information on sepsis recovery. You may also find it helpful to chat to one of the nurses on the support team at the UK Sepsis Trust, you can ask them questions and discuss your concerns. Contact them by calling 08088000029. Sepsis Recovery booklets
  19. 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.
  20. 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
  21. 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 .
  22. 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
  23. 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.
  24. 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
  25. 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.
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