Too Many Unknowns In My Sepsis And Post Sepsis Journey

by Jun 3, 2017All Sarah's Journey, Pneumonia, Post Sepsis Recovery, Post Sepsis Syndrome, Sepsis0 comments

Too Many Unknowns In My Sepsis And Post Sepsis Journey

Whilst I am sooooooooo grateful to the medical team that eventually saved my life and to the nursing support I received on the ward in hospital…

I feel that my there were Too Many Unknowns In My Sepsis And Post Sepsis Journey!

This is NOT meant to be any sort of ‘negative’ or complaining view of my journey, but rather a statement of the facts and all that happened…

Being Ill & First Trip To A&E
  • I had never heard of Sepsis so I would never have known to suspect it (although I knew of septicaemia)
  • I thought I had ‘just the flu’ and am lucky I decided to go to the Out Of Hours Doctor
  • The first extremely grumpy A&E doctor sent me home and missed ALL the signs even though at this point he had diagnosed pneumonia and I had a CRP level of 404
  • I was lucky I recognised that my own body had gone into further decline within a matter of a few hours after my first visit to A&E (actually within half an hour of leaving A&E I had gone downhill)
  • I debated about perhaps phoning the doctor and am lucky that my own brain was screaming ‘No, something is really wrong, you need to go back to A&E’
Second Trip To A&E
  • On my second trip to A&E I still waited around 5 hours before being seen, even though I was told I would be ‘sorted’ straight away
  • I waited nearly 11.5 hours on a chair connected to a drip before a bed was available. I actually had to ASK if there was any way I could lie down as I was feeling so ill
  • I wasn’t told anything about my condition unless I actually asked specific questions – like whats my heart rate, whats my blood pressure, whats my infection level
  • I wasn’t told I had Sepsis until the 2nd day on the ward
  • Sepsis was never explained to me, I learnt about it myself AFTER I had left hospital
  • I had asked to see a physio on the ward to help me with my breathing and the joint pains I was having – they never came
  • Apart from the sister on the ward who was a friend of mine, I was not told anything about recovery from pneumonia or sepsis
  • I was discharged from hospital with NO information about what to do next
Leaving Hospital & GP Care
  • There were NO recovery or medical protocols in place with the GP
  • I had to fight to get a district nurse to come out and take my bloods as I was too ill to get out of bed – they would only do this once, after that I had to go to the GP surgery (which is a place full of germs and somewhere I did NOT want to be)
  • I had to ask the GP about when they felt it was safe to stop the anti-biotic. I got different responses to this and thankfully a more experienced doctor wanted to monitor my infection level first
  • I had to ask to have a physiotherapist assigned to help my lungs recover from the pneumonia and to help my mobility which had affected my hips
  • The GP was at a loss as to how to help. They didn’t have access to any additional information that I had already gotten online. It became clear that I was learning more about Post Sepsis Syndrome than them
  • I wasn’t necessarily after medication, I wanted help, people to talk to and someone who might understand what I was going through
  • There were no local support groups in place. Thankfully I found a couple online as these really were lifelines in the early days
  • GP support is limited to checking my bloods and discussing the results over the phone
  • I have asked for a second referral to physio as my hip is now out of place and a heart specialist as my heart rate is often erratic – that was over 6 weeks ago, I am still waiting
  • I had NO understanding of the ‘real’ affect of the recovery ahead
Self Healing & Recovery
  • Over the past 6 months I have pretty much learnt how to heal myself ON MY OWN
  • I am lucky I am so determined and stubborn and I sought out my own medical and non-medical help
  • I have found a sympathetic GP who helps out where she can
  • I have been working with an acupuncturist, she is the only one who has really listened to me personally and looked at ways to help
  • As I have many drug and food allergies, I have had to look at ‘alternative’ sources of healing – everything from food through to supplements, meditation, art therapy and working around energy levels
  • I have had to accept that I am in long-term recovery mode – this is pretty overwhelming at times
  • I have had to accept that I am lucky to be alive – this is pretty overwhelming at times

In this day and age it is really unacceptable that the road to a persons recovery should be so hard! In truth, my gut feeling is that there is little available knowledge simply because in the past so many people would have died from Sepsis. Today there is such a better understanding of it and through better and faster healthcare on arrival to hospital more people are surviving.

I really want to change the journey for Sepsis Survivors. Whilst we are all different and all our needs are different wouldn’t it be lovely if there was at least a basic protocol in place with your GP that would steer you in the right direction.

We shouldn’t have to do this alone!

 #sepsiscare #sepsisrecoveryprotocols #sepsisvitality #sepsisrecovery #lifeaftersepsis