My Sepsis journey!
I am so very grateful and thankful to the wonderful paramedics of the South Western Ambulance Service and staff at North Bristol NHS Trust, Southmead Hospital, for helping me to get well enough, following sepsis, to be home for Christmas with my family just a few weeks ago. Especially as my youngest son was returning home from the States for just five days!
Alas, this recent episode was not my first but my forth experience of sepsis and the speed at which it struck, this time, will stay with me for a long time!
My Sepsis Journey:
I was only advised last year that the first time sepsis struck was back in September 2011 when I had just moved to Southern Spain for the winter with my youngest daughter.
Living with ongoing chronic health conditions (Sjögren’s syndrome, Sjögren’s small airways lung disease and vasculitis, psoriatic arthritis and fibromyalgia) I had been forced to take early retirement from a job that I loved, due to my failing health (previously working in trauma and crisis management in HE, counselling in the NHS and teaching in FE & HE). As my health appeared to worsen severely during the damp and cold of winter, I decided that I needed to try living in a warmer climate for the winter months to see if I could get some kind of quality of life back in my life and function enough to allow me to work once again…
Timing and planning had been crucial, so we moved late August in 2011 to coincide with my youngest daughter starting a new international school. It was a huge upheaval for all of my family, leaving my other older children back in the UK. But it all felt so important for me to try and get some kind of life back and to feel productive and be able to work once again in an area that I dearly loved…
We made the move and had only been there for a few weeks when I developed a water infection, (a UTI which I didn’t realise at the time had developed into a Kidney infection) which I foolishly didn’t seek medical help with in time! I was very busy settling in to our new way of life in the healing warmth and sunshine, with family visiting for my youngest’s birthday and with her loving her new school – life felt so good for a while, until that fateful day that
I had picked my daughter up from school and the pain had slowly worsened throughout the afternoon. I’d been invited to lunch with a new friend and I just couldn’t sit comfortably thinking I must have hurt my back due to the sudden, uncomfortable back pain! When we arrived home, I was overtaken by an overwhelming feeling of being so very unwell, feverish and struggling to function. I had to lay down, thinking if I did I would feel better, leaving my daughter doing her schoolwork after I had attempted to prepare a quick dinner (and subsequently burning it!) and as the evening progressed, I eventually realised that I seriously needed to get help as I lay there in bed shivering violently with what I now know was the rigors!
I had earlier alerted my other children, at home in the UK, to keep in touch, via text, with my youngest, ‘just in case’ as I didn’t feel too well! Now, looking back, I think I realised, on deeper level, the severity of the situation that was starting to develop?! Eventually, and trying not to panic my daughter, who was then just 12 years old, I told her that we needed to call upon the neighbor’s for some help. Thankfully, we had met them previously as they taught at my daughter’s new school. We arrived at their door late at night with me, by then, vomiting with fever, shaking violently and near collapse!
Emergency medics were thankfully called by the wonderful neighbors and I was given intravenous antibiotics, there and then, in their apartment! I made the decision not to go to hospital at the time, as I didn’t want to leave my youngest alone, despite the neighbor’s offering to care for her. She was naturally terrified by the very traumatic experience. The neighbor’s very kindly insisted that we stayed with them that night and in the morning I miraculously managed to remain stable enough, (following that large dose of IV antibiotics), to drive to the airport and fly back to UK. I was still feverish and felt so very unwell, whilst pretending to be fine so I would be allowed to fly! I later collapsed back at home in the UK late that evening when everything seemed to start shutting down, literally. The GP I saw, upon my return, had prescribed just oral antibiotics…
Luckily my son found me when he returned home from work late evening and I was rushed to A&E by ambulance and pumped full of various IV drugs and 4 types of antibiotics. I was treated on different wards for 5 days with continual IVs of antibiotics. I can’t remember too much about it all as I was confused for a lot of the time… It felt as if I was moved wards a number of different times because I didn’t appear to ‘fit’ anywhere? But I’m so grateful to have survived!!
The second episode of sepsis was when I had developed pneumonia in Feb 2013 and again I became so very ill so very, very quickly and within hours collapsed after foolishly waiting through the night before I asked for help (not wanting to disturb the children until the morning)! I experienced all the same sepsis symptoms and was once again treated for 5 days on an AAU ward! I was told I was neutropenic too and at first they weren’t sure whether I developed pneumonia because I was neutropenic or whether I became neutropenic because of the pneumonia? Eventually, and as I recovered, they advised that they ‘think’ the neutropenia was caused by the pneumonia. I now know that this was undiagnosed sepsis once again…
The third episode that was this time confirmed as sepsis (from a ‘probable’ UTI) was on November 5th 2014, after I collapsed at a GP surgery. I had felt unwell for at least a week prior but I couldn’t get an appt to see a doctor so had no other option than to arranged a telephone appt for later that day. But that morning something, somehow, felt very different as the now all too familiar symptoms eventually began to present themselves, once again… A dear friend was visiting from Devon and we had arranged to go for breakfast and we found a wonderful countryside location. We were planning to spend the day together but as the morning went on I had the overwhelming desire to return home as I yet again started feeling so very unwell and went ‘down hill’ very quickly. We returned home and after attempting to speak with a doctor for a couple of hours, we eventually managed to get a doctor to agree to see me at my local GP surgery just a few doors up from my house. It was there that I collapsed after trying to convince the GP that there was something terribly, terribly wrong with me as she asked me what I wanted her to do?! I begged her to just help me and I remember telling her that I felt like I was going to die, as they struggled and failed to do an ECG because of the severity of rigors. By then I was shaking uncontrollably and couldn’t stop vomiting, had an extremely fast heart rate of 135 and breathing too quickly. Eventually, she rang for an ambulance and I was blue-lighted to A&E! I can vaguely remember the paramedic wondering if I was having a panic attack because of my very fast breathing and I remember telling him that I used to teach breathing techniques for relaxation so I knew that it wasn’t. I apparently spent 4 hours in resus on that occasion whilst they stabilised me and did various tests and scans. I was treated with 4 types of IV antibiotics along with an additional strong antibiotic that they apparently only use when really necessary and eventually I was transferred to AAU. I left hospital a little earlier than advised after just 5 days due to a bad experience in there…
It was only then that I saw the word sepsis for the very first time on the discharge summary but I still had no understanding of what it meant! It was then that I sought guidance and support from the UK Sepsis Trust after searching online for further clarity and information on what exactly sepsis was…
My most recent and forth episode of sepsis was just a few weeks ago when I collapsed at home on 15th December 2016! I was recovering from what I understood to be a very bad virus with an awful bronchitis type cough which had taken hold at the end of November. Yet again I was unable to get an appointment to see a doctor but instead prescribed a course of oral antibiotics over the phone, just in case… I then became extremely unwell and was taken to hospital at the request of the GP. I wasn’t kept in but allowed to return home later that night after being told it was just a bad virus. I spent a week or so poorly in bed with my daughter having to take a few days off work to care for me. Eventually, I seemed to be recovering well and started to get back to normal, or so I thought… This particular day it all started out just fine and I felt well enough to collect my daughter from work and take her to an appointment. As I waited in the car for her, all of a sudden I began to feel increasingly unwell with very bad upper back and shoulder pain which started to affect my breathing! We needed to stop at a shop on the way home (to buy balloons and chocolate for a dear friend’s Birthday that I was to attend that evening) my daughter went in to the shop for me and as I sat there waiting, I just knew that something was now terribly wrong, once more! I started feeling extremely cold inside and yet hot and very feverish and shivery at the same time as my breathing began to get more and more difficult. Once again I had an overwhelming desire to return home ASAP. I told my daughter how I felt and I just rushed to lay down as soon as we got in the door… I had now began to recognise the all too familiar feelings that had struck me previously and I just knew that I needed medical help! My daughter rang to speak with a doctor but they weren’t available for over an hour and whilst she wanted to ring an ambulance I asked her not to trouble them as they’re always so busy but to ring 111 instead! But of course, once she had told the 111 operator the symptoms that I was experiencing they sent an ambulance out immediately anyway.
I can’t remember too much after that but I was rushed straight through to the ED and whilst I apparently didn’t initially score too high for sepsis they treated me with IV fluids and antibiotics, painkillers and various X-rays and scans. Again I remember feeling that I was going to die and had the most horrific stabbing head pains imaginable – I was screaming out in pain and begging my daughter to make sure they didn’t let me die!! They couldn’t determine if the chest pains were pneumonia, pleurisy and even checked me for a heart condition. They never found out what the horrific stabbing head pains were but I was told that I was septic! Eventually, after a few hours, I began to feel a little more alert and more ‘with it’ as I had responded well to the IV antibiotics and fluids once they kicked in! I very rarely take any antibiotics or medications and I’ve been told that’s why I responded so well when they’re desperately needed to work and to work quickly!
I was transferred to AMU where unfortunately, one of the IVs blocked and tissued badly and caused circulatory problems to my hand and for a while I lost any feeling. As it was my left arm they were concerned about any potential heart issues and did further tests. Eventually circulation and feeling returned (but I’m still left struggling with what feels like bad nerve pain)? I was also left so painfully battered and bruised after 14 further attempts, by various medics, at inserting another cannula for a CT angiogram as my veins seemed non existent by then! So after five days of IVs, antibiotics, fluids and CT scans with moves to two further wards (with the most amazing nursing and medical staff), I was just so very grateful that I was then medically well enough to be discharged (the discharge summary confirming that I was ‘admitted with sepsis’). Whilst I returned home still feeling extremely poorly, exhausted and weak, I was just so very, very grateful to everyone who responded so very quickly to halt the sepsis and helped me to recover in time to be home with my family for the holiday period.
I’m still left shocked at the speed at which sepsis took hold this time, in just two hours, and surprised that I didn’t realise sooner what was actually happening? But I will be eternally grateful, that firstly, I wasn’t alone when sepsis hit me so fast and that the amazing paramedics and ED staff considered it may be sepsis! We had made sure to ask “could it be sepsis?”
I feel blessed and extremely fortunate as I know that I remain one of the ‘lucky ones’ surviving sepsis, now four times, whilst not needing admittance to intensive care or critical care interventions or procedures other than IV treatments and regular monitoring.
I have certainly noticed a huge difference and vast improvement this time in the awareness of sepsis in the first response who now carry sepsis information and use a sepsis scoring system in the ED. This, I believe, is due to the fantastic work of the UK Sepsis Trust who have worked tirelessly to continue their campaign of raising awareness to save lives… There are, of course, still many areas of concern out there for many and still a need for improvement in some areas, especially for some GP surgeries! I feel passionate and have vowed to help all I can to continue raising awareness too.
The UK Sepsis Trust have been there for me and for so many others to help in their recovery and support those left grieving… the ongoing fight to raise awareness will continue by many, including me, and I would love to use my past work experience to help provide more support and create more support groups for those left affected by sepsis… There is also a need for some kind of followup and aftercare for sepsis survivors and naturally this is of interest for me, personally.
My life now:
I now live day to day with a huge fear of sepsis reoccurring and must admit to now being a somewhat paranoid when I get the slightest infection or virus… At times I’ve felt absolutely terrified as my history is that ‘I crash’ so very quickly! I have extreme bouts of exhaustion and fatigue and I’ve experienced very low mood at times and mood swings. My short term memory is awful and concerning at times and I’ve even been assessed for dementia which was thankfully negative! I now have problems with significant muscle inflammation and struggle to walk at times along with various other physical symptoms which I’m not sure are related to existing chronic health conditions or the sepsis?
I’m now advised to contact medical support immediately should symptoms reoccur or if I become medically unwell. My medical records are now apparently ‘flagged’ on computer at my GP practice so that I can be seen urgently, if needed, and so I wouldn’t have to wait as I did before. From my recent experience of sepsis, disappointingly, this hasn’t helped me…
When I travel, I’m advised to carry with me, various BP, thermometer, oxygen monitors so I can keep a close eye on my condition if I do get sick and enable me to take action urgently, if needed.
I’ve also been advised to only travel to areas where there are large hospital facilities nearby.
Not just myself, but my whole family have been badly affected by all of this and they are always on standby and on ‘tenterhooks’ when I do get ill and of course we all get concerned that it may yet again develop into sepsis.
But I REFUSE to live my life in the shadows of sepsis and will continue to help raise awareness so that others, like me, can seek medical help and intervention in time… I’ve met too many wonderful folk whose lives have been completely shattered by sepsis – Awareness will undoubtedly save lives!!