My Sepsis Story
I am a 48yr old bodybuilder or should I say I was a bodybuilder, after 25yrs competing at local, national & international levels I retired in 2015. Since then I have focused on my family, online coaching and my own health & fitness that was until shortly before Father’s Day 2017 let me tell you my sepsis story…(with a little background)
I was diagnosed with secondary FSGS kidney disease way back in 2011 but it played no noticeable roll in my life, I had almost forgot I was diagnosed with Chronic Kidney Disease (CKD) as the years passed by my function began to decline at a much more consistent pace, this led to me getting check up appointments every 3 months.
The Start of it All // September 2016
Then in September 2016 I had an acute episode which dropped my kidney function by 25% in a matter of weeks, over the next few months the function deteriorated further to a point in January 2017 it dropped to a point that no one expected, my function had dropped to 10% and I became symptomatic so the consultant placed me on dialysis.
Over the next few months I carried on with dialysis and to be honest it was not painful nothing in my life changed really apart from making time 3 x week to do 4hrs to clean my blood, then came June the 15th
15th of June, 3 days before Father’s Day, my sister was visiting we had a pre op appointment with the transplant live donor team the next day (16th June), At midnight I was woken suddenly shivering so much my teeth were chattering I had a fever, so went downstairs to get a drink, after 5min I felt sick then after hours of being sick I fell asleep exhausted.
Over the next two days I showed different but worsening symptoms from high temperatures to sore joints and then finally early in the morning of the 18th (Fathers day) I could not move my legs plus I was in excruciating pain.
At the time I thought it was flu and dehydration due to the cramping although I now know all of these symptoms indicated I had Sepsis.
So instead of waking up with my 4 kids saying happy Father’s Day I was in the back of an ambulance being rushed into Derriford Hospital.
I was rushed through into resuscitation all I can remember is that I was surrounded by medical staff.
4 hrs I spent in resuscitation before they had stabilised me, in that time my wife had been told to “prepare herself for the worse” I don’t remember much from that day or the following 2 weeks as my body fought off Sepsis shock to stay alive, it took my wife a year to tell me that in those two weeks I had brain scans as I was having hallucinations the medical staff thought it had gone to my brain, thankfully not.
My wife was at my bedside the whole time we have spoken since to where she has helped me understand how close she was to being a widow.
It was found that the Sepsis infection was caused by a severe staph infection on my dialysis tunnelled line that was in my chest.
The following days, weeks and months Sepsis tried its hardest to take my life but failed mainly due to my fitness level and muscular physique along with the tireless round the clock care I received from the staff at Derriford Hospital Mayflower Ward
Sepsis did a real number on my body the list seemed to be never ending it included a collapsed lung, clots on my chest, heart failure, fluid on my heart, plus 6 operations in a 7 day period to save my legs.
54 days I spent in hospital so I was keen to be discharged but when that day happened within 3hrs of getting home I wanted to go back, the panic attacks and anxiety I experienced in the first few days and weeks where shocking, I just was not prepared for what was to come after discharge.
My kidneys where in a shocking state my heart valves where leaking making breathing a real struggle, dialysis was a real challenge as it made me violently sick for several hours after each dialysis session not something you want your kids to see you go through.
My failing kidneys and heart valves meant I was constantly in and out of ICU as my body tried to cope with all the issues Sepsis had caused, this disease seemed to still be holding onto me to create more issues months after I was discharged from hospital.
The fistula they had put in my arm had developed far too well so well in fact it made my arm double in size and increased my neck by 7inches.
This was due to the blood in the artery this issue eventually gave me chronic heart failure and this needed to be sorted as a matter of urgency so November the 14th the night before the operation I was taken back into hospital to have the fistula tied off.
The next morning being nil by mouth for the last 18hrs the last thing I expected was to be sick but when the theatre staff came down for me I threw up, I think it was because they said that if it went wrong I could die, it is a scaring thing being told that before an operation.
It all sounded simple enough but the risk was all the blood in my arm going back to the heart and killing me, once the surgery was completed I was placed on a ventilator in ICU for the next 4 days.
I was then moved to the Renal ward once they where sure I was in a safe place.
Christmas that year was very different as you would of thought but to add yet another blow to my already awesome year my chest tunnel tube fell out 3 days before Christmas, so over the festivities I had to have a neck line placed in the left side of my neck, that meant I had to go to my daughters 18th party with a neck line sticking out I am sure many of her friends thought it was weird.
When Christmas was over this was removed and yet another (my 4th) chest line was Inserted into the right side of my chest.
I did start to improve at the beginning of January so a decision was made to plan the transplant whilst I was in what the consultants called a safe place.
We got a date of the 23/02/2018 for my kidney transplant to say I was happy was an understatement, to be free from the dialysis sessions and the sickness that went along with them would be amazing.
The morning of the transplant I could not believe the day had actually arrived after everything I had been through over the last year. I was at my lowest weight of 72kg in the last 8 months I had lost 35kg of mostly muscle….
The operation was a success and I woke with several tubes coming out of my body, my sister was doing well and was discharged only 4 days after, that week for me in hospital after the transplant could not have gone better, I improved from day to day and to everyone’s surprise was discharged 7 days after the transplant.
Once the new kidney was in and working my recovery started to really take hold it was only then when I could actually see an end to what had been the worst year of my life.
Time to Recover // February 2018
It hasn’t been plain saying since the transplant far from it but compared to the hell I went through with Sepsis in 2017 it really has been a breeze. the struggle I deal with now is mainly to do with my mental health. Living with the realisation that I came very close to death is hard to comprehend never mind recover from.
18 months on and Sepsis is still controlling my life, less from a physical place and more from a mental one, as I have recently been diagnosed with severe PTSD.
Sepsis destroyed the physique I had built over the last 30yrs and although my physique was the last thing I cared about, mentally it has been a huge concern.
Physically Good, Mentally Not so Much // January 2019
I have finally been able to be seen in Therapy from the critical care unit, it seems I had slipped through the net for after care mental health support because I spent most my time in the critical care unit on the renal ward and not in ICU.
After reliving everything that had happened to me when I was in hospital and since discharge the diagnosis I received last week was that I have a severe case of PTSD which would explain a lot of things including ilucinations that I have been experiencing.
I am going to have 10 appointments booked to carry out a treatment called EMDR therapy to help me heal
I have also been diagnosed with Depression and PSS (Post Sepsis Syndrome) these will take time to recover from far longer than the PTSD, I will be honest life scares me now, I am in a place where I am happy to be alive but not sure why, I go through periods of anger and sadness whilst outwardly smiling to the world so that I do not cause a fuss and be that guy that people avoid asking if you are ok.
Time to Build for the Future // May 2019
My personal battle is far worse now than it has ever been, the struggle I have with my mental health is sometimes so hard I ask the question that maybe things would be easier if i never would have made it past that first day
The battle with Sepsis is not only when you are in hospital but way past the date you are discharged.
Know the symptoms, save a life