Tuesday 6 November 2018

How nearly dying in ICU changed my life for the better

So I know recently I have became the poetry guy and I like that because I enjoy doing it and some people like to read them but I have departed from my primary purpose, To use my story to shed light on what it’s like to be an icu survivor, a sepsis survivor, a stomite, living with load of autoimmune issues and battling mental health issues. I have felt that in doing things that where funny and less serious that it has taken away from the serious cause.

But less about my hang ups and back to why you clicked here, how can nearly dying be a good thing I hear you and every rational thinking person saying. It’s simple from a young age I wanted to be a medical doctor because I wanted to help people and there is nothing more important than helping sick people get better. However as I grew old certain things became apparent, my dyslexia coupled with a school system that refused to accept it as a problem made it difficult for me to achieve what I would need to get into a medical degree coupled with my diagnosis of autoimmune hepatitis and ulcerative colitis which put me in hospital every 3-4 months made it a steep uphill slope. But as anyone who knows me in real life or reads my tweets or my work here you know I am a fighter, this was no different I left school with 3A’s, 2B’s, a C in highers and a B advanced higher. I was acccepted into a highly respected chemistry degree, I pivoted to chemistry because it was something I loved and I thought it would give me access to working in the pharmaceutical industry as it could be my way of helping people.

The degree was hard and I scraped by and before my final year my colon gave out leaving me bleeding and pleading to die, I had my colectomy and completed my degree but it took its toll on me. I had two good years where I worked for a large pharmaceutical company before I started having twists and peristomal hernia repairs. This was the start of my healths downward spiral which you can read about in my first and second posts. But it lead to my ICU admission which had me in an induced coma for 2 and a half weeks and a total stay of 17 weeks in hospital. I suffered from delirium, depression, anxiety, ptsd, muscle weakness, fatigue and cognitive and memory issues. My family where told multiple times that it was highly likely I was not going to survive because they had no idea what was wrong with me; spoiler I didn’t die incase you where wondering but my brother put it best when he told the doctor, “You don’t know my brother as long as his heart is beating he will be fighting.” And I won the fight but I can hear you thinking, ‘Mark I don’t see how this made your life better’ ok ok I am getting to the point but the prelude was needed to explain why the next bit is so important.

So being an ICU survivor has opened opportunities that where not available or even possible to think about before hand. I was asked to be a peer volunteer for InS:PIRE a post icu rehabilitation clinic/service, I got to help people by sharing my story. I’ll say that again I got to help people and not in a small or casual way my input was welcomed by the staff of the clinic and helped some of the patients to realise that what they went through/are going through is normal. This role is the single most fulfilling job I’ve ever done, I have worked for charities and other non profit groups but no feeling can match a icu survivor coming up to you and shaking your hand and thanking you. No money can match it and no feeling can get near it.

As a somewhat active advocate for improving icu and post icu care on Twitter I have networked (a term I hate) with other icu survivors like 
Mitochondrial Eve and post icu researchers like ex ICU nurse Dr Pam Ramsay as well as having world leading experts in ICU care thank me for sharing my experiences or giving my insights. It is amazing me, who is just a guy in Scotland with no special medical training or education is being treated as an equal/peer by Dr, Nurses, Occupational Therpaist, Physioterrorists (our affectionate term for Physiotherapist, since they terrorise patients to get up day one after surgery :)) etc from all over the world people from Spain, USA, New Zealand, Chile and Canada are listening to me? I am not special, I am no different from any other survivor but one of the stoma care nurses explained to me that I was willing and able to speak about my experiences and did it in an eloquent way. I thought well I am glad I fooled someone because I got a C in higher English and get anxiety about talking in public because as a dyslexic person I was often force to read aloud from books in English class. I have improved greatly since my school days but I don’t think I am a great public speaker, passionate but not great.

This brings me on to my next point through my poetry on here, my activity on Twitter, Pam who never met me and didn’t recognise me when we first met (sorry Pam) invited me to speak at a post icu event, creativity in post icu recovery. Now I don’t see myself as a really creative person, I wrote poems because as you might tell from this post I can go on a bit but poems concentrate my points down, they help me to convey the serious issues I want to address in bite size chunks for busy people like Drs and nurse to read. I was asked to speak because twitter let people outside my hospital know who I am and my work was powerful. I spoke at the event with other survivors, PhD’s, artists, international rugby player, Nurses and others I can’t remember all as equals no one was more or less important. At the event other survivors came up to me and said they where moved by my poems which was a great feeling. I have been asked about speaking at a conference and potentially working as a ‘patient expert’ in research and I have volunteered to be a patient reviewer for the BMJ.

None of these wonderful life changing experiences would have been open to me if I had not nearly died in ICU, I can’t go back and change my life so I was never in ICU and if I could I don’t think I would because I am who I am today because I survived. I like who I am today. The person I am today makes a difference, it might not be in the way my six year old self expected to but it doesn’t lessen it. I get to help people there is no greater thing in life than to help your fellow humans.

I have a motto for my medical life: survive, adapt and thrive. You can’t change what happened to you but you can make the most of it and be the best you can be.

Saturday 3 November 2018

Going home: fear of leaving.



Going home


Going home is a mixture of excitement and fear,
I don’t know what will happen when I leave,
Could it happen again, could I be back in days?
Going from watched every hour of the day to alone I go,
Fear is reasonable but unsettling.

Going home is a sign of improvement,
Reaching the final stage of recovery,
Returning to family and friends,
Normality scary but still progress,
Time to rest in my own bed.

Discharge coming but support needs to be in place,
Daily nursing visits must be arranged,
Special dressings ordered to come home with me,
Vac pump prepared and arranged for the journey,
Nearly got everything ready to go.

This is not the end of recovery but a new chapter,
Long hard weeks lie ahead,
Wounds that open waiting to heal,
Weakness I must battle an opponent unseen,
But victory I will achieve is what I believe.





Going home after hospital is a scary thing, especially after emergency surgery like I had because it’s possible it could happen again. Patients might be glad to go home and I am too but there is a bit of fear too. Reassuring patients that support is thereafter hospital is key to reducing the terror of going home. So this post got lost in the ether somehow since my surgery both of my wounds became infected, my old stoma site became septic. When I wrote this I didn’t know what was coming but I was prepared for a fight because after surgery I always expect the worst. Leaving hospital is usually a relief for me because I am usually healthy enough but this time it was simply the hospital was a dangerous place for me with my immunodeficiency. I returned home very weak with the need of assistance to get out of bed in the morning as my abdominal muscle was weak, I required dressings to be changed, food made for me and help to change my stoma bag. I have sacrificed a lot of things in my life: my dignity in needed to be bed bathed in my ICU stay; my freedom as my immune system means large crowded areas are dangerous; my self-image the scars, procedures my body has endured has shattered any love I had for how I look; my ability to work ‘hard’ my conditions sap my energy they bring me to my knees sometimes I used to be a great worker now I have to manage my time and how much I do so I’m not fatigued for the rest of the week.

This has been a struggle it has been nearly as hard as my ICU journey because I bounced back quicker from ICU even if I started from a worst position but the wounds and my weakness have set me back a lot but I am glad to say I can see the finish line in sight, my old stoma site is nearly completely healed and the mid wound is very shallow hoping to get it ‘scabbing’ soon.

Thoughts on the A-F bundle

 I was always told to stay humble, I was told let others speak about the things you do, So I’ll talk about the A to F bundle, It should be f...