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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
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.
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
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.
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 ?