lyndsey7513@yahoo.co.uk

Hi There First of all, glad you survived sepsis, you are one of the lucky ones. I too had sepsis just over 2 years ago and I still suffer now, but have been left with a partially collapsed lung after getting sepsis, which started off as a virus and was sepsis went undiagnosed and I was sent home to die basically from A & E, with pneumonia and sepsis very lucky to be alive the following day which then led to double pneumonia and sepsis. Luckily i survived with all limbs in tact so I guess we are the lucky ones. It took me over a year to recover although back at work after 6 weeks to help with the emotional side of sepsis, which helped my sanity somewhat. I still get funny sensations in my legs I call it restless legs post sepsis and numbness in my hands and I suggest i have slight nerve damage which can happen. The first year had to go on steroids every so often to help with breathing difficulties and pains in my right lung and had repeated chest infections which had to be treating with the strong antibiotics. The best thing is to know your limits not over do it thought I was still able to do the same things as before but could not as it makes you frustrated, I was 46 when I had sepsis March 2014 I was quite fit for my age which I think helped me survive, I was in Acute ward for 4 days, could not walk after 4 days, was walking like someone drunk, as my muscles had atrophied. My advice is don't think you can run before you can walk, take it steady, you will have good days, bad days, stay as positive as you can, don't expect your body to be what it was before, I find that exercise helps me and having a personal trainer has helped the last 3 months with my breathing difficulties I can now walk a mile now without getting out of breath unlike walking 100 yards like previously and feeling the need for oxygen. Also it does leave scars emotionally, I suffer with anxiety now so it has left scars, I also suffer with bad forgetfulness which I never had previously I find my self apologising for being forgettful, I have to write everything down nowadays, but I feel like one of the luckiest people alive and embrace everyday with, 'life is for living!' 'Life is Great philosphy', I never look back now, stay strong and things will improve, hope you are feeling better soon, take care. Lyndsey

Hi Helen Sorry to hear that you had sepsis and that you survived it most of all. Many don't survive it i too survived it another lucky one. I had sepsis like yourself, mine was bought on by a virus which then developed into pneumonia, then double pneumonia, which then turned into sepsis. This went on for a 2 week period in total. I now have a damaged lung now. But i am alive so very grateful. It does take a very long time to recover from sepsis. I too was 46yrs of age, very healthy very fit and that's why i survived it too. I had sepsis April 14' it took a good 12 months emotionally and physically to get back on my feet properley. I am not as fit as i used to be now to be fair i get very tired easily now can only walk so far and get very breathless due to lung damage. My advice is don't be too hard on yourself, take little steps, i thought i would recover no problem after 2 weeks, how wrong was i? The important thing is to stay positive set small goals for yourself each day and each day will be different. You will get very good days and very bad days but eventually the good days will put weigh the bad days. You will be very emotional in fact i still am emotional now its almost as if part of my brain was damaged as i can cry at the slightest thing now which wasn't like that pre sepsis. This is the hardest part for me but i have learnt now that i am an emotional person and i have accepted that fact now. I cry at programs 9n tv now but i think some of it is down to menopause rather than sepsis perhaps so hard to say. You are doing everything right but accept it is a slow process not to be rushed. Eventually you will gain your strength back and look back at it and think why was i worrying. Good support from friends and family is key, good nutrition and positive thinking all helps with recovery. I know people on this forum have suffered post traumatic stress disorder after sepsis and it is common to get this, i did also so talking to a counsellor does help. Hope this all helps and wish you a good recovery with this. Kind regards. Lyndsey

Hi Terry, I am so sorry to hear about your great loss. This is really bad. The hospitals struggle to detect sepsis it seems. I am a sepsis survivor, I had sepsis in April this year, mine started as a viral infection, then within 2 weeks had turned in to double pneumonia and sepsis, the hospital A & E Department, failed to recognise I had sepsis and released me after 1 hour, I was told my the A & E Doctor to stop worrying and just relax, she failed to spot my prurple rash on my face which I pointed out to her, my heart rate was up, my blood pressure low, I had all the signs of sepsis on that day I went to A & E, I could not stand up, this was on the Friday day, they performed an X ray, which she told me was clear, gave me anti bitoics and sent me home. It turned out I had pneumonia on the Friday and sepsis, I went home I was severely tired, no appetite at all, not really drinking as such apart from taking medication. I was vomitting bile. Consequently, the next day on Saturday by lunchtime I couldnt walk I was in a deep sleep, not drinking, severly dehydrated, my mother was over that day and called an ambulance as I became unresponsive completely, couldnt move, Paramedic came, he spotted sepsis immediately, which the doctor failed to recognise the previous day, my heart rate was very high, I was tachycardic, could have arrested at any time apparently, he couldnt get an IV line in, my blood had started to coagulate in arms, they rushed me into resus, where doctors were waiting for me, within 20 minutes they had an IV line in my arm, bloods were taken straight away for cultures, an x ray was performed straight away and revealed I had severe pneumonia, the doctors were talking and saying that I should not have been released the day before and was very lucky to respond to the anti bitoics, I was on a heart monitor all night and blood pressure was very low, but monitored every half an hour, I was placed in an acute ward and constantly monitored. My body like your son's was very swollen all over, severe rash,temperasture of 104 degrees, struggling to breathe etc. I was in hospital for 4 days, then released with a lot of antibiotics. To cut a long story short. I did lodge a complaint against the hospital and the doctor that treated me. I have had my complaints meeting with hospital Consultants and clinical director in July this year, I went into the meeting armed with research from British Medical Journal, to which they could not argue with, I can honestly say, that the Consultant over A & E and clinical director admitted I had sepsis on the Friday when released home, they also stated that I was very lucky to be alive the following day, they admitted negligence in front of my son & myself, which was a victory to me. I have since had all of this in writing from the hospital and signed by chief executive of the hospital. Since my case had been discussed at the hospital big meetings they have with all departments, they have now rolled out training now across the hospital with all departments raising awareness of sepsis and used me as their case study, I have had apologies from Consultants in person and stated they had failed me. It is not very often that hospitals admit in person and in writing that they were wrong. I now have lung problems now in my right lung and my lung has collapsed and struggle to breathe and get very out of breathe now, compromising my health now, but I am alive and very grateful but feel anger also as I was a very healthy 45 year old. Also, the Doctor who treated my and failed to diagnose sepsis, turns out to be Romanian,I asked the Consultants where she had done her medical training and it was in Romania not in the UK which I am not a predujiced person, however the hospital have now sent her for re training over at University Hospital in a large City, which I will not name for libel or legal reasons or even state which hospital this was at, apart from it was in the West Midlands area. My advice would be question, question, question, the hospitals as to why this was not detected earlier as you need those answers otherwise you will not heal emotionally until you have those answers, my thoughts are with you at this difficult time and your family and you will get a lot of help and support on this site from survivors but also from people who have lost love ones, I read a post the other night on here about a little girl who died, when I read it I was in tears they would not stop and I have tears in my eyes from your story too.. But ultimately, there needs to be more awareness of this silent killer and I will do what I can to raise this awareness. Feel free to contact me if you need any more advice. Take care. Lyndsey x

Hi Doodle, You really have had a bad case of it having had sepsis three times and a kidney stone operation, you poor darling. You are over the worse now and things can only get better for you. This is very debilitating, you do have down days but will also have good days. It is very hard to keep going with having had sepsis at times and I think the only people who really truly understand are the survivors of it, you almost feel like a hypercondriac I know I do at times and you try and keep the symptoms to yourself to try and get back to normality, well at least thats what I try to do as we almost feel guilty complaining about our symptoms to our family and friends and also doctors. When in fact we have he right to do just that as talking about it to someone whether a health professional or to friends/family it makes us feel that little bit better but does not necessarily make the after effects of sepsis go away. I am still struggling with having had sepsis and to be honest I try to keep it to myself as much as possible at times, I go into work put on a brave face, get on with my job but when I return home I am completely and utterly exhausted like never before. I came in from work Saturday, had a 50 mile round trip to work and back, I went straight to bed and I have a family, but I just needed to sleep I was exhausted. I slept from 4.30pm-7.30pm I could have slept for England, but my body was telling me that is what I needed to do and I must confess I did not feel guilty about it. My family understood and were supportive. So if you need to rest or sleep you do just that and dont feel guilty about it it is your body telling you to do that. I know we do feel angry at times with having had sepsis, I feel the same at times which is only natural all these emotions are normal. I some days can just cry and cry and never stop, its my anger coming out, gladly its not every day now, probably every 10 days or so, something can just trigger it off, but when I have a good cry my gosh do I feel great for it. So if you need to get it out have a good cry its therapeutic indeed. I have been referred to a counsellor now at my request my GP thought that I didnt need one having spoken to me at length bless her, I have had very good support and understanding from her which I think helps. I have a lot of aches and pains like I never had before and I too have numbing in my legs and hands at times I think I may have a little nerve damage as I get tingling with it too, it comes and goes, I never had this before sepsis. All I can suggest Doodle is that to stick in there we are all here to help and lift you up if needed as we all know what you are going through and really feel for you. To pick you up a little why dont you book yourself when better for a nice manicure or pedicure or hot stone therapy, aromatherapy or facial or a lovely day out whereby you are treating yourself for the day as you deserve it!. Take care for now and the only way is up! Lyndsey x

Oh thats a wonderful way of expressing yourself. Its so beautiful. Its good to put pen to paper its very healing. I too have wrote a poem but it was about how to appreciate every breath we take and how important it is to be able to breathe and really appreciate that fact and to wake up each day alive. Its funny how sepsis can really bring out our creative side, which maybe we thought we never had, it awakens our real senses. I think we ought to try and write a book, all of the sepsis survivors and donate the proceeds to Uk Sepsis Trust I really want to get involved now with fund raising and what better trust to campaign for. If you would be able to blog to us how long it was when you had sepsis and how you coped with it and how long it took you to recover that would be really helpful. Kind regards. Lyndsey.

Hi Doodle & Anna, Yes, Sepsis I believed happened for a reason, our bodies will always let us know when they have had enough. I have 4 children, 2 older ones adults now and two younger ones, working part-time and always putting other peoples needs first but never my own. It was a warning sign to say slow down a little, I was always rushing around at 100 miles per hour, the sepsis did slow my body and mind right down and yes I can relate to coming out with odd words, I call my children by the wrong names at times and i have a slight stutter at times, which I never had before when I try to talk a little too fast. All of these things are frustrating and I got very annoyed at first with myself and why I was back to normal straight away, but then Rome wasn't built in a day I tell myself. I too can honestly say that you do find out who are your true family and friends, the ones who are there to support and call you up constantly. I also had a lot of support from work and I have now reduced my hours even more so to allow myself to recover properly, I have found not to plan too far ahead now and strive to do this and to do that but also not worry about the silly things in life about why the chores haven't been done and not to nag so much at family and really appreciate life more than I did before but also not taking life for granted and enjoying life but seeing it in a new light. Anna -Its great to see your life has returned back to normal and have had a new addition to your family, but also shows there is light at the end of the tunnel and that we need to be a little patient with our recovery and not be too hard on ourselves and trust that our body physically and emotionally will return to normal. Here's to a new perspective on life!

Hi Doodle, I am also a sepsis survivor. I was admitted into resus by ambulance paramedics beg. of April 2014, very poorly as a septic patient with acute pneumonia, I am a 46 yr. old woman who normally fights illness, well I don't really give into illness to be honest with you. I am the last person who you would have expected to have been admitted with sepsis. The gps stated that I only survived because of my age and they caught it just in time and put in the IV drips immediately when I arrived in resus, thanks to a brilliant paramedic who was on the ball, I am thankfully alive! I was in hospital for 4 days on drips etc.I did escape ICU but was placed in a Acute Ward as I responded to the IV drips immediately. I was discharged the same with no aftercare advice, I wasnt given an explanation at all about sepsis, the consultants just told me I was very poorly, thats all. To be fair I had brilliant care whilst in the Acute Ward, but no explanation of sepsis, however as I studied health sciences at Uni I did know about septiceamia which is what is used to be referred as but now called sepsis, so I knew it was blood poisoning so \I knew it was quite serious. On returning home it was my close family and friends who managed to help me with this terrrible disease, I could not walk properly, I felt like I had a stroke, my muscle co-ordination was all over the place. My brain dormant, like I really had to concentrate on just being able to speak, I had to really thing about it, the words just would not come out of my mouth. I felt very emotional and tearful, I would cry and cry like I had no more tears to shed. No one explained these side effects to me. I had no medical support whatsoever, I was just left on my own to pick myself up physically and emotionally. I have suffered post traumatic stress from getting sepsis, I wrote a journal each day to get my feelings out which was very therapeutic indeed. I went away to Portugal for Easter for 2 weeks with my family, still very weak, however I found the sun was my therapy and helped me to recover, 1 month after getting sepsis, I returned to work for my own sanity, to stop my pondering over my illness, I needed to get back to normal and I must confess it has been my saviour, as \I onlywork part-time, but do have quite a stressful job but also very rewarding at the same time. I still have down downs where my moods are quite low, which I never had before I am quite an upbeat positive person but some days I find it hard to get out of these dark moods. Physically I am gaining strength back although getting aches and pains more than I used to. My lungs is not quite right at present and I have just had a follow up chest x ray, awaiting results, fingers crossed, everything is ok. My advice is to keep yourself busy, think positive, good nutrition I think is key, less stress in your life if you have stress as this I think weakens your immune system, as I think that is what weakened mine as I eat very healthily but do have stress with my career and homelife. Write a journal each day on what triggers your tiredness, I think it is normal to still feel tired as my body has not fully recovered as yet, but hopefully will and so will yours. This site is a good site as it gives hope but it makes you appreciate that we are one of the lucky ones, there are thousands who lose their life to this nasty vicious body tornado as it sweeps so fast through the body leaving such devastation. More support is needed and more follow up from Gps/consultants is needed but all comes down to lack of resources ultimately. Hope you recover fully soon. Lyndsey.

Hi there Woody, I have recently survived sepsis back in early April 14', I havent had any organ failure as I know to as yet, it has left me with a very weak right lung, I have a rattle now, just been for a follow up x ray on my lung, await the results. I was lucky enough to stay out of ICU just about, I was in hospital for 4 days, very weak verypoorly indeed, I could not walk straight I had lost my muscle co ordination for a while, it took a good 7-10 days to come back. I am now suffering with post traumatic stress at present and very tearful at times, I have gone back to work for my own sanity really, part-time though. There is not enough support I agree totally, the hospital discharges you without any aftercare advice etc. I recently bought a book called 'Gyroscope', an american survivor who decided to write about his near death experience, mainly because I have started writing a book on my experience of it and did not want to re write any of his work, but it is a good read, to cope I have had to put pen to paper to get it out of my system and to try to remain positive in the aftermath of this deadly illness. I try to keep a daily diary on my moods etc. I do get very tired easily also, mainly when I have had a day at work, it really takes it out of me, but mentally being at work helps. Try to stay positive and hopefully your body may try to repair itself slowly, I was back at work after 4 weeks of having sepsis, my Gp thought I had gone mad when I stated I wanted to return to work so quickly and it was too soon, however it was my choice to go back and it has done me the world of good, kept my mind on other things apart from sepsis, after I returned home from hospital all I could think about was sepsis, I carried out so much research into it consumed my mind totally, all my family would hear was sepsis this, sepsis that! There are no forums apart from this site its the only one in the UK but its re assuring to find other people to communicate with afterwards for support.

Hi, I would be interested in attending. I too had sepsis in April this year and I think it is a great idea to set up a support group as I have had no support so far apart from friends and family but they haven't had sepsis so find it hard to understand how I feel at times. Would be nice to meet others who have had same experience. Lyndsey.