Mark Sollis reacted to Jgbtaylor in University Project: Monitoring Infection to prevent onset of Sepsis
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.
Mark Sollis reacted to Larry in Have I got Post Sepsis Syndrome?
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.
Mark Sollis reacted to red squirrel in 5 months since kidney surgery
Hello Richard, welcome to forum. your current symptoms are something that i and many others im sure can identify with and sound quite normal considering what you have been through.i also arrived at sepsis via what was thought to be a kidney infection post surgical .its taken me along time and with a great deal of resistance on my part to come to terms with sepsis and what that actually means for me as far as recovery/timescale is concerned bearing in mind that no two patients or recoverys are exactly the same i have read as much as i can both on and off this forum and would encourage anyone to do the same. this forum and the help of other members have helped me to manage my expectations in that regard. recovery will come although this can be painfully slow at times, you have been through so much over the past few months so in that sense its still early days, we had some great support from the sepsis nurses on here i know you cant phone them but im sure you could email them, they were very helpful to me and my wife.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.
wishing you recovery.
kind regards ian
Mark Sollis reacted to Isabel in Any insight is welcome
Morning Charley H20
I hope with each reply it gives you a small bit of comfort. Its a traumatic time for you also trying to help your daughter. We all send our thoughts to you your husband and daughter.
I too had my bowels destroyed and into my stomach. I had it pumped twice a day of infection after surgery. Also weekly visits to surgery.
Its a big shock to your husbands system and you will be struggling to know what to think. It is a long recovery but each day is a new one that I really hope gives you all the support you will need.
Sepsis UK support phoneline are invaluable, please when you can ring.
We too are here as someone will always understand what you feel. There is no right or wrong way to feel. Just do what you are doing.
THE BEST YOU POSSIBLY CAN. Thank you for finding us. Take care of yourself.
Many blessings to you all.
Mark Sollis reacted to Richard Bone in Any insight is welcome
Dear Charlie H20
I can only imagine what a horrible and difficult time this must be for you, and of course your Husband. Just hold on fast to Hope and Faith (whatever that may be for you).
Six years ago today, I went into hospital to have my gall bladder removed, and - well, things went very wrong and after two days I ended up with profound Septic Shock. I was transferred to another hospital, and owe my presence here now to the skill and care of the surgeons and staff there. I too was on dialysis for a while. So my expected stay of one night turned into 16 months, and it was a long journey. Now, six years on. I don't have quite the strength and energy that I once did, but I can and do live quite a good life, all things considered. I was able to return to work (albeit part-time) and driving, both of which were big milestones.
The most significant thing for me throughout that "battle" was the constant love and support of my beloved Partner and my two daughters - which so helped me hold myself together.
I do hope that your Husband progresses well, and the clouds start clearing for both of you very soon. Very best wishes.
Mark Sollis reacted to Magicwebby in Any insight is welcome
CharleyH2O, I am replying as a survivor now enjoying life after 5 years when it all seemed lost - I’m afraid it can take a while!
Please read this as a message of hope and possibility.
I had frequent admissions with liver infections needing drained each time, before my gall bladder was removed, and this gave me extreme Sepsis. I was in ICU for 7 weeks on life support and dialysis, my son came home from Australia as he was told I would not make it. Recovery took a while as I learned to walk again and I was treated for severe depression during this time. I developed an incurable blood disorder when I was better, and this meant regular draining of my spleen and the treatment gave me diabetes requiring frequent insulin injections each day.
I am now healed, and deeply grateful for so much - the NHS care, both physical and mental, was extraordinary. And not least, the devotion of my wife and family was unstinting. I have welcomed my second grandson now, and look forward to each day. This has taken time, and many ups and downs, but the joy of restored life is so precious.
I wish you blessing and strength through this time, and look forward your better news. Love and blessing. Brian W.
Mark Sollis reacted to oliverjonesUKST in Any insight is welcome
I'm sorry to hear your husband is unwell. This is understandably a very difficult time for you. It may be helpful to speak with the support nurses at The UK Sepsis Trust. We are all qualified nurses with vast amount of experience in Intensive Care looking after patients with sepsis and advising people in there recovery. We are available via our freephone support number, 0808 800 0029, Mon-Fri, 9-4. Or email firstname.lastname@example.org
Its important to reach out to those close to you at this time. To support you and your daughter.
I would also advise you to get daily updates from the Intensive Care team. Communication is vital and if you have any questions, write them down.
Brian is an example that many people do survive this so hope is important. It is also not uncommon for sepsis to affect the kidneys so they require support in the form of dialysis.
Please don't hesitate to get in touch.
Wishing you and your husband well,
Oliver Jones - Support Nurse UK Sepsis Trust
Mark Sollis reacted to Gillianflutes in Any advice gratefully received!
First of all I just want to give you a big hug! We are all on an unexpected journey, that we didn't ask to go on and yes, our lives are now very different.
I had Sepsis in July 2015 and what you have written was basically me too, expect I am a bit older (53 then and 56 now). I was competing in triathlons, running half marathons and had always lived a 'healthy' life. The consultant told me that being so fit is how I managed to survive the Sepsis. I wrote a blog for a while called 'Believe!' (on wordpress) and that summarised some of my ups and downs, including some of the things I did to help myself 'get back'. Roll forward to December 2018 and am I back to what I was? No, is the answer, but I have gradually (VERY gradually!!) come to the belief that I was given a lesson (the biggest one of my life) and I now completely appreciate the life I have. I am living my 'new normal'. I have had to take early retirement from my post as head teacher of a rural primary school, because I do not have the physical or mental stamina for the job anymore. However, I am currently setting up a new business called 'AndBreathe...'. I cannot work full time, but this business is focussed on wellbeing, sharing the tools I have used, and still use, to get me through the ongoing challenges that I still face. I might not be running any more half marathons but I can run (not so fast or intensely, but I can run) and I can go out on my bike (not time trialling but a good cycle enjoying the countryside) and I am back loving a swim now and again.
The main thing I am left with is the fatigue, which is mostly manageable now. The only thing I haven't completely figured out is that if I have a rush of adrenalin (excitement, stress, too much going on), my body crashes big time after the adrenalin wears off. I haven't figure out a way of easing that reaction.
There is a group on FB called Sepsis Warriors. I have found them to be a very supportive group. I tried a couple of other groups but found then to be too depressing.
This is absolutely NOT an advert, but I am now an EFT practitioner and would be happy to Tap with you, if you would like? Have a look at my website www.andbreathe123.com
The most important piece of advice is to be kind to yourself. Don't beat yourself up. You WILL find that not everyone understands and you will definitely find who your true friends are. Maybe that isn't such a bad thing?! Take your time and focus on the small steps. I know how hard that it but cherish the small things.
Mark Sollis reacted to Larry in Help
The forum is a great way to find support, you soon realise that you are not on your own and many of the problems you are experiencing are common following sepsis. Like Mark said you can call the sepsis helpline and speak to one of our trained nurses, they have a lot of experience of sepsis and the many problems that can occur after. You can tell them what has been happening to you and ask any questions you may have. It can help just talking about what has happened and how you are feeling now with someone who understands sepsis.
Mark Sollis reacted to Skyehammer in How can i keep going
Hi Isabel , I pop in from time to time to read various people's posts to see how Sepsis affected them .
After reading your opening post it got me thinking whether you were suffering from some form of Arthritis - Before I contracted Sepsis back in December 2012 I was taking 3 diclofenacs a day to treat the pain I was getting from arthritis - In April 2011 I had an operation on three of my lower discs , the Surgeon told me that normally he would have pinned my spine but a the rest of it was in such a bad way from arthritis my back would have collapsed [ I think that's what he said anyway ] .
I was on a Life Support Machine and Dialysis for 3 weeks , I was in ICU for 4 weeks , my stay in hospital lasted 3 months .
I died for several minutes when my heart gave way - the Doctors told my wife that should I live I would most certainly be suffering from brain damage , the Doctors inserted a temporary pacemaker telling my wife that the procedure could kill me - it was touch and go for a few days but I survived and apart from a memory problem my brain was unaffected .
Now , upon coming round properly I was told that I would no longer be allowed to take Perindopril or the other blood pressure medicine I had been taking prior to the sepsis happening . After a few days the pain from the arthritis returned , my fingers and wrists hurt - they gave me diclofenac but my sole kidney reacted badly to it so Diclofenac was added to the list of medicines I wasn't allowed to take .
Upon coming home I agreed to take Allopurinol after refusing to take it for years - my arthritis disappeared - ok I get the occasional flare-up but in 5 years + I can say that's happened maybe 3 times -
I too have to take very strong opiates because of my back problem , 2 x 60mg Dihydrocodeine twice a day - they make me feel lethargic and it takes a lot of will power to get out of my chair some days , I can't walk very far before having to stop to sit down , I trip and fall on occasion and I do tend to worry more than I used to [ could be the opiates ] ..
However , I'm still alive , I have the best of families around me and I live in one of the most beautiful places on God's Earth , I have a lot to be thankful for . I wish you well , Isabel .
Mark Sollis reacted to Larry in Antibiotics and diabetes
Having diabetes does affect your immune system and can make you more vulnerable to getting some infections. It is possible for any infection to develop into sepsis so yes there is an increases risk for you to get sepsis.
The most important thing is if you think you may have an infection seek medical attention and get assessed to see if you need treatment. Similarly If you have any wounds or cuts you should keep an eye out for any signs of infection and get treated quickly.
It is the infection that becomes resistant to an antibiotic rather than the individual person, so you are not going to develop resistance yourself. It is important that doctors don't prescribe antibiotics unnecessarily as this will result in more resistant infections but this is a decision they will make based on their assessment of each patient and in your case will have to be considered along side your diabetes and your previous episodes of sepsis.
If this is worrying you then you can talk to a member of our support team by calling 08088000029. The support team are trained nurses with experience of sepsis and some of the problems that can occur after. You can discuss your concerns with them and they can answer any questions you may have.
Mark Sollis reacted to Skyehammer in Today Is My 5th Year Anniversary .
Good Morning Everyone ,
Just looked at today's date and saw it was five years to the day when I went down with sepsis .
After spending over 3 months at The Royal Alexandra Hospital , Paisley and our local hospital here on Skye it took me nearly a year to recover from the physical aspects , the mental side of my illness is still there otherwise I wouldn't be writing on here today . In fact my only strategy of recovery from the mental side of my sepsis was writing , I'd write on every forum I belonged to , I became a bit of a sepsis bore I am sure but it was my way of coping and also informing those around me who had never heard of sepsis .
For those of you just out of hospital I would say this - Stop Worrying - Get as Much Exercise As You Can - Get As Much Rest As You Can and Eat Well , You Are A Survivor .
I remember when I was in Hospital my son asking my Consultant whether I'd contract sepsis again - he replied ' No ' of course - however there are varying degrees of sepsis - I was treated for sepsis only last year again - a gallstone had got stuck in my ampula and I'd turned a nice shade of yellow - The Doctors didn't know this at the time of course and I was immediately treated for sepsis - my treatment went on for nine days . I felt fine throughout . I had my gallbladder removed 6 months later .
My 2012/2013 sepsis put me on a Life Support Machine for just under 3 weeks , my sole kidney and my lungs failed here on Skye and I was flown to Paisley as it was snowing in Inverness - after a few days I suffered cardiac arrest , my wife was informed I had died at one point then told I'd ' come back ' , the poor thing had gone home to Skye for a clean set of clothing when she heard this news , she just turned the car round and drove back to Paisley . I wasn't told this story until I was back home and well . The Doctors never did find out what had caused my original sepsis , I have a few suspicions but that's all they are .
Five years later I still think about my time in Hospital , the fantastic Staff that saved my life and cared for me afterwards , I think about how lucky I am but I still try to get on with my Life - I no longer work due to a disability , I had a spinal operation in 2011 and can only walk short distances Sepsis was just something I had to get through , it needn't spoil the rest of your time on this earth - Stay Strong Everyone .
Mark Sollis reacted to Gillianflutes in Seeking support
Take your time and be kind to yourself. It is going to take time to get back to feeling completely well. Youth is on your side but with youth might come impatience! Your body has gone through so much. I am not medically trained but I have been through three days in Intensive Care after septic shock as well. I eat very carefully (no junk food!), rest as much as I can and listen very carefully to my body. With a wee one you will find it hard to rest but do try because fighting the fatigue does not help you at all. All the best xx
Mark Sollis reacted to red squirrel in My harrowing patient journey
hello elric, really sorry to read of your recent experience and i hope you may be improving ,although you mention its in the past its actually only 5 weeks or so since the procedure a,rigid cysto under a g/a is no joke and the uretha is a sensitive bit of kit,im not surprised at many of the symtoms your experiencing ,Normally rigid cystos under g/a are not performed in increments of less than 3 months to enable recovery,so try not to worry about the lenth of time this feels like its taking,It sounds like you are well read on this so continue to do the things that can aid recovery,drink plenty of water,steer clear of tea and coffee, pomegranate is a good substitute,move arround as much as you are able,gentle walks at the start,a good relationship with your gp is also helpfull,if the pain continues they may suggest different pain meds with an anti inflammatory.
The pain will subside although it may not feel like that right now,
You dont mention if a biopsy was taken or what the results were so i,m hoping that the major cause of concern has been ruled out.
Recovery from sepsis can be hard enough without the complication of an invasive procedure,
be good to yourself.take the time you need,and be sepsis aware.
i,m glad you have felt some reasurance from speaking to someone from the trust,i know the times i have spoken to them they have been most helpful.we also have some sepsis nurses who post on here also,there are sepsis support groups in some regions might be worth finding out if there is one near you,when you feel able to travel.
kind regards red
Mark Sollis reacted to Larry in Sepsis Survivors Survey
If you are a Sepsis Survivor the UK Sepsis Trust would like to ask for your help. We have created a survey asking about your experiences following sepsis. This is for UK survivors only. The purpose of the survey is to provide us with information on what has been happening to you since you left hospital. The survey is anonymous and no personal details or IP addresses that may identify you are collected. It will take you about 12 mins to complete the survey, please select the link below if you would like to take part.
Mark Sollis reacted to Gillianflutes in after advice
Hi, I am exactly two years post sepsis (septic shock after blocked kidney). I can now say that I am better. I am different to before e.g. I can't jump on a bike and ride 70 miles (but not many people can?!), I CAN now run a 10k (but slower than two years ago), I do have to manage my energy (but not quite so much as last year at this time). I have a 'new normal' and am comfortable with it. I am back to enjoying life. However, last year I was in a similar situation to you. I felt like I was trying sooooo hard and always taking two steps backwards for every three forwards. It was relentless and I had had enough. Like you I am against medication and rarely take any form of meds. But last year, I recognised that I was depressed and went to the doctor. I said that I would agree to a short stint on anti-depressants, as long as we had a plan and there was an end date to the medication. It was the best thing I could have done. Like you, in the past I would have seen it as a weakness, but this time I saw it as me taking control of the situation. The meds got me back to a place I felt I could fight again. It has been a very, very long difficult journey. At times I despaired of ever feeling like 'me' again, but now I can say that I DO feel like 'me'. I have always eaten a very clean diet but have become even more fastidious! Read up about Apple Cider vinegar (with the mother). I drink ACV every day now. Like you I have cut down on wheat etc and have limited my intake on dairy but I do love cheese and yoghurt so have not cut them out completely. I tried acupuncture for joint pain and that did help, but long term was expensive. Keep going! You can do it! X
Mark Sollis reacted to Palmiter in after advice
Good morning Lou,
My name is Bob and I live in Sacramento, California. It has been 8 years since my 5 month hospitalization with Sepsis. I would like to address some of your concerns. Please note much of what I have been told have been from a very fine team of Doctors that helped me during and after my hospitalization.
I can empathize with your many of your overall physical issues. For example; leg pain and weakness. I still suffer from that almost daily. The Doctors explained to me that Sepsis often causes muscle and nerve damage. Toxic inflammation from Sepsis can literally effect just about ever organ in your body, and muscle and nerve tissue are just as vulnerable. Will it EVER get better? Quite simply, no one really knows. As I was never expected to walk again, I can hardly find room to complain.
As far as your "tired" and "weak" symptoms are concerned, suffice to say that is the result of the Sepsis "assault" on your body. You are STILL recovering and only time will tell when and if you will feel 100% again. It took me about 3 years to finally feeling back to where I thought I should be. I know that seems like a long time, but it beats the alternative.
Above all, be patient with yourself. Things do get better.......just maybe not the way you had hoped for. To help with possible depression, my doctor prescribed for me a drug called CELEXA. I have take it everyday since my release from the hospital. It does help with the "what if's" and my general overall mood. It does not make me drowsy, or feel "high", in fact, I don't notice any physical sysmptoms at all. It does, however, seem to help as a coping mechanism.
I hope you have found this information somewhat helpful. I wish you all the best.
Mark Sollis reacted to Isabel in The BBC News Page online today 10th March
Thank you for sending that. Well done to Patrick
How so true the magic words. Not have I sepsis but " How do you know it isn't Sepsis !!! ".
I am still struggling four and half years on after sepsis destroying my inside. I was a patient recovering from an operation, if you like I was ' lucky ' to be there and rushed to surgery.
(My story is on my forum)
I am in the older age and I know I have been told it's longer to recover.
I am amazed the common factor we are struggling with is .......
We want to do so much AND do try.
Why are we thinking just as if we have turned a corner pain, aches and extreme tiredness hit us again.
I know the answer is a bit at a time, aren't we all guilty of not doing that. But we don't sit there and think I cant try, I wont try.
So please if you are reading this you Are doing well, think what has hit us. If you had a really bad case of flu or another illness you would sign off from work or rest wouldn't you. Magnify this big and that puts it into perspective.
Boy am I great at putting into words what I don't always practice.....but I will.
Well done to you all and me for the hard work we put in.
I hope you have a good weekend.
Mark Sollis reacted to Mookie in How long to feel well again?
Thank you for your advice.
I have called the telephone number and they advised to call my GP, who came to visit me the next day.
I am still in terrible pain in my muscles and joints all over my body, especially in my legs. The worst part of my recovery is that I still do not understand why I feel so weak, and that I am still having great difficulty thinking straight, talking, remembering anything, and the simplest of tasks like holding a cup, or brushing my teeth are so strenuous and tiring to accomplish. I still cannot stand up or walk without a walker frame.
I have read a lot of posts on the forum, and I feel more reassured from all the members here that I am not alone, and that I will eventually start to feel better.
Mark Sollis got a reaction from MarkDUK in How long to feel well again?
Thanks for joining the group and for posting - I know it must be a worrying time coming out of hospital after having Sepsis
Can I suggest you contact the Trust on their freephone number. They are a fantastic resource and have staff on hand who can talk with you and provide the support and assistance you need - without typing.
Please give them a call on 0800 389 6255