The Evolution of Mark

Version 1(arrogant)

Born with a serious glint in my eye,

No in fact a terrible squint in my eye,

Dyslexia made Academia hard,

Struggling for each inch, each yard,

Cocky little dude who had it to easy.

Until 14 his life was pretty easy,

Doing well at school, no struggles,

Diagnosed with ulcerative colitis,

As well as Autoimmune Hepatitis,

This was his end he turned the light out,

He wasn’t equipped for the fighting.

Version 2 (Angry) 

Every three months in the hospital admitted,

Difficult to control my conditions,

Changing of pills and increasing steroids,

Rage building in my soul,

Part pills and part self hatred.

Hard to get along with,

In constant pain, lashing out,

Hard to live with,

But hard to be,

Conditions downward spiralling.

Till the fateful week where the bowl failed,

Blood running fast,

A wish to be dead,

Begging to end it all,

No fight in his souls.

He died no the surgical table,

Metamorphosis brought about a new age.

Version 3 (Mr Grit)

After the Surgery entered Mr Grit,

A fighter at his core,

Not stopped by twists, surgeries,

Nor ITP nor Neutropenia,

Going head long through every fight.

A kinder version but still hard on the edges,

Softening over the years despite the fights,

Helpful when you needed him,

Few friends but ride or die with them,

Until the 27th December 2015.

The date etched on my soul and my bones,

The start of the worst time in my life,

It was only a couple of days till I was fighting for my life,

The end of Mr Grit,

In the darkness of hospital recovery,

In the darkest of times spawned Mr Positivity.

Version 4 (Mr Positivity)

Modern Day Mark is so different,

Positive, supportive, Strong,

Undefeatable, different goals,

Different life, limited but not demished,

When down and out came the light inside.

Came the ability and experience to help,

Story laid bare for the benefit of others,

A part of my soul given to those who need the words,

A shoulder or hand given to those who wish it,

An ear to those who wish to share or commiserate.

A conscious choice to bring positivity,

To be as positive as can be,

If asked to help and able to, do,

A hand given because it’s right,

Knowledge shared freely.

Experience explained,

Turning the darkness into light,

Making the bad into good,

Staying positive when wounds turn infected,

Staying upbeat when life is affected,

Always looking back always reflecting.

Proud of who I am,

More friends now than I ever expected,

So very moved to be respectfed.

Hey guys thanks for reading, today is the 3rd anniversary of my admission that sent me to icu so after over coming my first panic attack in over a year I decided to set aside an hour to compose these and reflect on my life. I am so proud of the volunteering I do and I am so very humbled when I am asked to speak at events. I am so glad to have been given the chance to make my bad times into positives for other people and I am glad for each and everyone of you reading This because you have supported me in my recovery. My recovery from ICU will never be over as the after effects are still being felt and will no doubt linger as they have got worst with the passing years not better. I thank each and every one of you for your help support and love. I thank those who have asked me to speak, volunteer or help out, it means the world to me, you all know who you are.

Please feel free to comment or share 

With great joy

Mark

Terror on the horizon

The third anniversary

Terror in my gut is rising,

Gazing out my window at the horizon,

Dark clouds looming,

A storm is coming,

Steadfast in its way,

Girding myself for the fight.

My body wears battle scars,

My medals of victory,

Both pride and sadness,

Wars I’d rather not’ve fought,

Bitter sweet wins.

Broken, weakened, lifeless,

Death awaiting beside me,

But fight in me still,

Digging my trenches,

Readying for the war.

The battle done but the darkness remains,

Friends and comrades fell,

My sanity changed forever,

Memories gone never to return,

The darkness my friend my foe but never my master.

The 27th December is the anniversary of my admission which ended in my 3 week icu stay (17 weeks in hospital in total) I am so thankful that I am still here still fighting. I am grateful for the ICU staff at crosshouse hospital who gave me a fighting chance. I am thankful for the chance to volunteer with InS:PIRE and to speak at delirium conference in March. I have a lot to be thankful for and things I can still do, it’s easy to dwell on what we can’t do. I am aware that over the next few weeks I will be battling my inner demons but please know that dark Mark is still Mark he’s just got weights trying to hold him down. He will fight through it because I always do, just remember my friends that I love you and you mean the world to me. You teach me things everyday from POCUS to how to write poems to how to slay at podcasting or crushing it in making a new conference to promote women in medicine to the kindness I am shown everyday by you.

You been with me during my peaks Well now comes one of my troughs but remember we need the bad to appreciate the good. We need dark to appreciate the light.

My bowels, my surgery and my scars

Above is my abdomen at the moment I had surgery in August and it’s taking a while to heal so hence the dressing. Scar one is my original stoma site 0 was a stoma put in ~2010 it was placed as an emergency because I was bleeding profusely and wanted to die but it was the greatest thing ever because it stopped the pain of my ulcerative colitis and made me feel so much better I went from 60kg ish to about 75 kg and for 2 years it was bliss, I didn’t and still don’t like my stoma but it was a vast improvement. Then I started getting peristomal hernia and bowl twisting issues, I have had with that stoma maybe 8-10 hospitalisation with twists and two resulted in peristomal hernia repairs until 2015 when it was moved to site 2 now this stoma had no chance of surviving and it I am honest I am surprised it lasted as long as it did, it was another emergency move but one month after it I was in ICU for my coma time I went from 90kg down to 65kg (i’m 6’1” for reference) so all the muscle it was stitched to and relying on was wasted away. That brings us to site 3 relocated in late August 2018 it is December at this moment and it has not fully healed because site 2 got infected and went septic, ML my mid line wound which was about 10-11 inches long dehisced (burst open)leaving a wound 2 and a half inches deep and four inches wide. Thus it has taken a long time to heal needing the assistance on vacuum dressings and Iv antibiotics to treat the infection which undermined it in the first place. The reason the area around 1 and 2 is so saggy is that it was heavily herniated and I have lost 12kg so I have a lot of loose skin, my abdomen doesn’t have many flat places it is akin to the alps

Remember just because someone looks normal (and I do most of the time because of how I dress and the behaviours I use to draw attention away from it) doesn’t mean they’re not scars lying underneath. This trauma on me is easy to see once the barriers are removed but it’s exactly the same for all trauma we put up barriers to protect ourselves all you need to do is know how to look or what to ask. Whether the scars are physical or mental remember they are the result of trauma and are often hard fought for, they should be treated with respect and dignity. I am very anxious about posting this as the internet is often a nasty place but I think this might help some people so it is worth any shit that comes my way. Just remember people we all have scars never be ashamed of your battles and remember no matter how hard your fight there is always people to talk to even if it’s just on Twitter.

Capital Night

My trip to the capital quick and fun,

Till we got to the centre then the nightmare begun,

Round and round we go, tempers beginning to fray,

Driving around till day became night,

Thank gosh I only here for a one night stay.

Excited for the night out but equally frightened,

These people I’ve met once so kind and inviting,

I sit in my hotel anxiety building, 

The knot in my stomach slowly churning,

But my conditions will not stop me,

Nor will I let them define me.

Met them once but some feel like lifelong friends,

Funny how ICU can unite you,

That journey shared needs not to be spoken,

Each of us strong when formerly broken,

Unashamed, unafraid, unbashful,

Life is for living not living in fear.

They invited me even though practically a stranger,

Accepted into their group without reservation,

Fortunate to have such wonderful friends,

Blessed to have found them in my recovery.

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.

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.

Ode to a Bacon milkshake

Ode to a Bacon Milkshake

Oh your sweet and savoury goodness,

You fill my soul with rejuvenating energy,

People question your worth but your greatness is for all to see,

You flakes of bacony pieces breaking up the blandness.

Everyone I speak to about you rebut me as if I’m crazy,

But when they taste you their mind is changed,

It’s wonderful, amazing, incredible the words that leave their lips,

Once you have hit their taste buds they can not resist.

You are soothing in the bad times and comforting in the good,

You gave me drive in the darkness,

You gave me an icebreaker for meeting new people,

But most of all you built me up when I was weak.

The Battle: Surgery and recovery

Before I start I just want to say I am on strong painkillers and as such this might not be the most coherent writing I do.

The Battle 

Vomiting and pain is what brought me in,

Fluids and painkillers first action to be done,

Wait and see the plan to begin,

But worst I got, the pain advancing as the hours passed,

A scan ordered to see the matter.

A blockage in a dangerous place,

A battle with surgery I must face,

Sped off down to theatre to fix what needed fixed,

12 inches of bowl removed, two massive hernia repaired,

Resighted my stoma onto the left, 

an infected wound another field of battle.

ICU was where I was sent,

Opened my eyes the pain was gone,

Painkillers so wonderful, jumping for joy,

Tube removed from my throat in matter of minutes,

ICU is not a scary place, it is filled with friends I have made.

My speedy recovery in the initial meant my time in ICU was but hours,

Transferred up to high dependency to be watched every hour,

The pain intrusive but not overwhelming,

Progress made each day with tubes, devices and lines removed,

A week passes now moved to a general ward.

Progress stalls as little measurable progress can be seen,

Internal strength the only progress I can feel,

Motivation is hard to maintain,

In a room by yourself sanity is a strain.

But what I am built for is to battle and survive,

If you give me a chance I will stay alive,

I fight not because I want to but because it’s all I know.

My friend

You are my friend, you cared when others didn’t,

I see you when you hurt,

I love you because you stand with me,

I love you because you’re great,

I love you because you are you.

Friends are precious never taken for granted,

True friends hold you up when the world is against you,

True friends support you when you are down,

But never try to steal your shine,

Friends love you for who you are, not what you have.

Friends might not be there when you want them,

But they will always be there when you need them,

They will say the right thing when it needs to be said,

They will respect you enough to tell you your wrong,

They will make you smile when the darkness comes over.

Friends are never afraid to give you a hug,

Never ashamed to show you love,

Friends are precious valued higher than gold,

Never take for granted the friendship you formed.

A good Dr vs a Bad Dr

This story comes from my visit to the hospital in June 18 with a very enlarged submandibular lymph node and very high temperature (39 ish). That's the setting if you want to know about my underlying health issues please read about me in my about me post.

On Friday I went to see my dentist as I had the swollen gland and it was becoming uncomfortable and as I was due to get the wisdom tooth removed the next week I was worried it could be an infection and didn't want to leave it over the weekend. The dentist didn't see any issues inside my mouth but as I have a weak immune system and the enlarged lymph she prescribed me antibiotics.

By Sunday, I went to the ED because the gland was very large and causing discomfort in swallowing but when the Emergency Registrar examined me he determined it was my lymph gland and the tooth which was due to come out in didn't look infected, there was no pain and no redness or inflammation in my mouth. So I was sent home being told the antibiotics I was on would kill whatever was there and since I was seeing Oral Maxofacial on Wednesday who would be better placed to review it.

So Wednesday came round and the gland was reduced but as my pre-op plan had not been coordinated I was not getting my tooth removed but they examined my mouth and it was ok. As I left the hospital I started to spike a temperature so I had some ice cream putting it down to the heat in the hospital. However, I had a night sweat so on Thursday I went to the ED because this was a more involved fever, I was taken into my local hospitals Combined Assessment Unit (CAU)

So now we have the background out of the way, what happened next is the strangest contrast I have had inside a few hours of each other.

Let's start with the good doctor, I was reviewed by an OM registrar: What did she do that was good?
She came in she asked me what was wrong, She listened to me as I told her and why I came in, she did a thorough examination of my mouth telling me what she was looking for and why and finally when she decided there was nothing OM related issues and that she would tell the doctor looking after me but they would be happy to come back if something developed. The Key is she treated me like a human.

The bad doctor came in like two hours later maybe an Infectious Diseases registrar, what was the Bad? She came into the room giddy, in my head, she had decided on her diagnosis before even meeting me, when she wants to examine my genitals (can be affected by mumps) didn't close the  blinds on the room and when asked only closed half of them I had to ask twice, when I was telling her what had gone on I told her that the ED doc had eliminated mumps because of the gland that was swollen she didn't seem to care, I was taken to the ID ward and placed behind barrier for five days a mumps test was done and I was discharged before the results got back. Heres the biggest problem when the test came back it was negative I didn't have mumps but I was forced to stay in a side room by myself with little contact outside of my visiting, getting medication and meals. I had my MMR vaccine as a child but it was not taken notice of. Her bad actions meant I went through what is always an unpleasant experience for me and my family as everyone has to mask, glove and gown up and I have to stay in my room.

I am used to being in a barrier situation as a person who is constantly neutropenic it is often the outcome on me being admitted, however, I object to it when I didn't need it. Mistakes have effects, this affected me mentally and if I had been in a couple days longer I believe i would have need to be treated for depression. I am a person, I am not a puzzle or a unique case for you to write up, would you like to be treated as such in my shoes I very much doubt it. So remember when you make a chose that will restrict a patient so much perhaps ask yourselves am I sure or mostly sure, because if there is strong evidence I can hang in with the best of them, I had 4 weeks isolated with swine flu in my ICU stay you prove to me its for the best and I will grit it but make sure it is the likely outcome before you imprison me please.


So the purpose of this is to highlight the good things that doctors can do, they are not difficult and if you are a good person you probably do it anyway but also to highlight the bad and the effect it can have on the person you are treating. The bad doctor didn't do anything horrendously wrong but the compound of a lot of little mistakes made for a big issue for me. I would also like to note it was the surgeon who had the best bedside manner, the best people skills and was the most humble so the idea that all surgeons are x,y,z is wrong. Patients are people treat them with respect.

Acceptance: The greatest Gift

Acceptance

I am a patient, medically an expert in just a few things,

Surviving Striving and Thriving while under stress,

An ICU stay that nearly ended me,

But turned out to be the rebirth of me.

I was never the most social of people,

Talking to others, terror-inducing,

The thought of parties a tiring thought,

Meeting strangers a crazy idea,

After rehabilitation complete, 

Invited to help those after,

Brought into a team as a peer,

Never looked down on but looked to for views,

Acceptance a feel new to me.

Hard work, volunteering and writing,

Drew attention from across the land,

An Invitation extended to speak,

A wary acceptance, fearing the stress.

Arrival greeted welcomed by all,

unconditional acceptance from strangers,

A strange new place I find myself,

Accepted by those who know me least,

Made to feel part of the team.

So I would like to thank the InS:PIRE team at Crosshouse who not only saved my life, helped me to rebuild myself but invited me to volunteer as a peer volunteer this has opened so many doors for me to talk about my experience and hopefully pass on any wisdom I have gleaned. 

I would also like to thank ICUSteps Edinburgh Who invited me to speak at their event but made me feel welcome and as if I was one of there team. It is very rare for me to be welcomed so warmly and unconditionally. 

This has only been possible because I nearly died and I am thankful that i did because these events changed my life for the better. It has given me purpose and meaning to my life and this was hard to find before my coma.

Ode to social Anxiety

Alone I sit awaiting my time to be called,

A foreign place with faces I do not know,

Anxiety forming in my gut,

Nausea my greeting.

Activity like ants going back and forth,

Each passing me by without a glance,

Moving from point to point in a trance,

Music in the air like a cooling breeze.

Invited here to tell my tale,

Invited to bare my soul,

Invited to help those who come after,

Invited to show the worst of my life.

Life’s journey is strange,

Never knowing where the tides will take you

The end certain but the route unknowing.

So this poem try’s to show what it’s like for me everytime I have to speak about my icu experience. It is taxing on me, it takes a lot of energy to do it. I have been asked why do I do it, why do I volunteer. I can help people by tell my story and that’s reason enough it is a poor human who can help and doesn’t, it is my job as a survivor to help others survive and thrive. To any icu professionals reading this remember a patients journey is not an easy thing to tell and if they share it with you, you should treat it with the respect and deference it deserves. 

Anaphylaxis: The poem of Adrenaline.

Allergic Reaction

It started with an itch,

I never thought it would come to this,

A little rash on my right arm after washing dishes,

Antihistamine taken, to counter a skin reaction.

I took a seat to watch tv with my family,

All seemed fine till I looked down,

The rash moved from a small patch on my arm down my arm,

Now it's on both arms and it is itching,

Fingers swelling and Hives forming.

Worry starts to set in whats going on,

Then the game changes when my Philtrum swole,

Talk of calling NHS 24 squashed,

This no longer a nuisance its life-threatening,

Into the car, we pile,

 I kept my cool even though I knew what was happening,

As we drive my face begins to swell.

I was surprised by how cool I remained,

I see the worry in my family,

The desk takes my name but doesn't need to ask my problem,

Shortly the nurse calls my name to take me to triage,

We Bypass it and go straight to a bed in ED,

A junior Dr came to see me,

My throat hurts, it is hard to breathe through my nose,

He noticed dysphonia and goes to get his senior,

While he went away panic started to grip as breathing became harder,

My throat closing, not instantly but slowly like a vice.

Enter Dr Yvonne Moulds,

The junior Dr seemed anxious, I was starting to fear,

But she spoke to be in a calm tone,

Reassuring me that she was in control,

I was being taken to Resus as a precaution in case things went bad,

I was wheeled in, I was aware of what the room meant,

Resus was like ICU, it was not a place for 'healthy' patients.

Canula was to be placed for the drugs that would be needed,

however, Dr Moulds gave me the first dose of Adrenaline,

Explaining why I needed it and the plan going forward,

The calmness and reassuring nature of her demeanour stopped me spiralling out of control.

The junior Dr went to place the cannula in my vein,

Adrenaline shakes making it hard,

But the air flowed into my lungs as my throat opens,

My words to the Junior Dr, "You get two goes then your out.",

Perhaps e thought I was kidding but when I told him after his second fail no more,

He looked taken aback but I am no pin cushion,

Dr Moulds took over getting the line in.

I laugh as Dr Moulds asked me if I thought, a second dose of Adrenaline needed,

My response, "If you think I do then I do too, you're the Dr.",

The second dose, not the big impact the first one had,

most of the swelling was down but not all,

Antihistamines given between doses, Family allowed in now.

Calm and to spend a day in the hospital to watch for a biphasic reaction,

Most of the swelling down before I left the ED for the Combined Assesment Unit.

--------------------------------------------------------------------------------------------------------------------------

I spoke with Dr Yvonne Moulds prior to writing this to make sure she was ok with it before I wrote this. Her calmness in this very scary moment in my life changed this from me being fearing for my life to almost being relaxed. Her quick reactions most likely meant my throat did not close fully though I think a few minutes later I would have been fully closed. It should be noted that from the rash forming till my getting adrenaline was about 25 minutes which includes a 20-minute car journey. I will next month be getting allergy tests to determine hopefully what I am Allergic to.

The NHS is filled with staff like Dr Moulds who save lives on a daily basis, whom you never hear about and never seek thanks or praise. These people are the heart and soul of the NHS. Anyone who knows me will tell you, I do not give praise lightly but the NHS is the sole reason I am alive without the many Drs, nurses and supporting services it has provided my extensive health issues would have overcame me.

So if you are British and you have had treatment from the NHS and it was better than you expected or someone did something which made the experience better, please write to them and tell them they did a good job because NHS staff get alot of complaints and little in the way of positive feedback. They do a wonderful job under some difficult pressures and restrictions.

Ode to Extubation, Breathing and Moving: A patients perspective pt2

Why do you talk about me like I’m not here,

At the end of my bed you stand and stare,

I hear you talking about my care,

I’m not tolerating the reduced air.

Then the words that I fear, 

One last chance before a Tracheotomy,

But now I'm less sedated don’t ever underestimate me,

You don’t understand my strength of will,

You turn down my air and I force my lungs to work,

It is hard work to keep on breathing even with the aid of a ventilator,

Soon the decision for extubation,

This is cause for celebration.

Tube out my throat the start of healing,

Oh what a wonderful feeling,

Wait a minute why do I have to think to breath,

Why is it not so easy,

All my energy put into breathing,

The slightest movement is fatiguing.

I remember not thinking about breathing,

Not having to force air into my chest,

Why can’t I return to normal,

Why is everything I do a problem,

Barely able to move myself,

Unable to wash myself.

But I am a force of nature,

After a few days I forgot about breathing,

But my lungs remembered,

My next stage was to get to walking.

The physio-terrorists come in to see me,

Get to sit on the edge of the bed,

After 5 minutes I’m nearly dead,

After a few days I get aided into the shower,

Cleaning yourself even if aided has a special power.

Next comes walking as I regain my voice,

The Taurus my friend and enemy,

First day they want me to use the frame to pivot to the seat beside my bed,

I go for a walk to the ward room door instead,

Exclamations come out in surprise,

I’d lost a lot of weight and I was frail,

But never underestimate my power of will.

Each day I walk a little more,

Nurses watching as I grow stronger every day,

Starting to walk twice, thrice a day,

Leaving HDU I had no central lines, no ventilation or ng feeding,

I was not back to normal but the first time in months I look like a human.

Ode to ICU: A patients perspective pt1

My eyes open is my torment over,

Have I return to my life once more,

Why can’t I speak? Where is my voice,

Why is there a tube in my throat? Where has my strength gone.

What is this place I find myself,

Who are these people staring at me,

Nurses, Doctors and Family,

Oh thank god my nightmare is over.

“You're in ICU” is all that I parse,

I look and see faces I vaguely recognise,

Part dream, part reality. Unsure what is true,

Is this a delusion, confusion or the truth.

It is hard to tell what is real when your brain has been misleading you,

When you have to question all that is said to you,

Family tell you it’s ok,

Doctors tell you your on your way,

That it’s remarkable that you have recovered.

In this room where I lay so much action every day,

Bells, bleeps, people coming and going,

My family looking worried.

The tube in my throat very uncomfortable,

Pulling at my lips, but I am aware why it is there,

Raising my hand to get suction because I feel like I am drowning,

The nurse frowning saying that not much came up,

But doing it again when I insist this time moving the weight in my chest,

The relief you will never know, that moment of compassion you have shown.

The three weeks in ICU that nearly ended my life (ICU Story pt1)

My recollection of the time leading up to my 'visit' to ICU are patchy at best but what I remember clearly was Christmas day 2015. I woke up that day with pain in my joints, which had been achy for a few days prior. I thought this was the start of a virus but that day my joints where painful and I needed my dad's help to get out of bed. I managed to struggle through the day spending a lot of time in my seat in the living room listening to my family and trying to have a good time but I needed to go to bed early as I had no energy and was extremely tired. In hindsight, there were a lot of warning signs, my lack of energy, the pain and the fact I am pretty sure I hardly urinated for a couple of days prior. The 26th of December, we decided that I needed to be seen by a doctor, deciding that the pain and lack of energy in an immunocompromised person like myself was something I needed to have a medic take a look at.

So a few things you need to know about me before I continue, I have spent a lot of time in the hospital with various issues, infections, bleeding issues, bowl twists and a host of other issues, so given the choice I will always take the choice that keeps me out of hospital and at that moment we thought it was just a virus that was beating up on me.

I saw an out of hours GP, I was only able to shuffle into the clinic as my movement was heavily restricted. The GP gave me the choice of going into hospital or trying anti-inflammatory medication to try and reduce the pain in my joints which might allow me to stay out of the hospital. As I felt ok mostly outside of the joint pain, I thought that it was not unreasonable to give the medication a chance and the thought of managing to stay out of the hospital was an attractive prospect.

The next sections of what happened to me are from the notes and logs that my parents as I have no memory of what happened to me. The next day, the 27th of December I was taken into hospital as I was in more pain and was barely able to stay awake. The Emergency Department (ED) assessed me and decided that I would be sent to the medical receiving ward, however, a nurse from the department felt that I was too unwell to be sent there and that I should be sent to High Dependence (HDU) because I was going to need hourly monitoring and I would not receive that care on a 'normal' ward. When my parents asked the junior doctor if he was sure this was the right course of action he said that he had checked with his senior and they had decided that the receiving ward was where I needed to go. The Nurse, however, was not happy with this and told my parents she would come up with me and have a word with the HDU staff to get me assessed by them. Within an hour HDU staff had seen me and taken over my care bringing me into the HDU unit. On the 28th December: I received head and abdomen CT and was suspected of having flu, my heart rate was 150+. By the 29th December they Tried to do a MRI but I was not tolerating lying flat while on oxygen. I was transferred to ICU where I was intubated due to my increasing paranoia and worsening condition.


I will not go step by step in my ICU stay but I nearly died a few time in my stay. While I was in my medically induced coma, I believed I was being tortured and on a few occasions I escaped and was hunted down by them. I believed I had been living this hell for 8 years when I woke up and before you ask why I didn’t know it wasn’t real, your brain tells you what is real and what is not and my brain was trying to rationalise what was happening to me. I was being cut, poked and probed in the real world and my brain was trying to understand it. I had intubation tube in my throat, an ng tube up my nose, an art line in either wrist (not at same time) as well as two central lines with 5 or 6 Ivs going at the same time. Consultants and experts from all over the country where asked for advice to try and figure out what was causing my problems, which we never really got to the bottom of. I was transferred back to HDU on 18th of January. We thought this was the beginning of the end of my recovery little did we know it was but the start of my problems, Post Intensive Care Syndrome was not something I new about but it was going to change my life forever.





Authors note: Hey guys, thanks for reading, I am sorry I am not getting these blog posts out as quickly as I would like but this is not an easy topic for me to speak about even years on. I’d like to thank Mitochondrial Eve who inspired me with her blog and podcast to do this and not fear what the internet might say. I will forever be in the debt of Crosshouse hospital ICU team and the InS:PIRE program for getting me back to ‘normal’ somewhom can be found by my Twitter.


I will in my next post cover the 14 weeks I spent in the hospital afterwards and catching swine flu in the hospital. I am also working on a post about my current journey to have one of my wisdom teeth removed and the accompanying medical drama.

Who am I

My name is Mark and I am to most Doctors an interesting case, why you ask because I have an abnormal number of autoimmune conditions, the blog title maybe gave you a clue. My immune journey started when I was about 14, I was 6'1" and about 133lbs. I looked like a skeleton my mum thought I might have celiac disease because it ran in the family. Little did we know what that set of blood tests would start, I didn't have celiac disease but I had an abnormal liver enzyme results at a level that worried my GP and got me referred to a gastroenterologist.

Now after lots of blood tests, ultrasounds, biopsy and other scans. The Doctors eliminated everything they could test for but where sure it was Autoimmune Hepatitis a diagnosis of exclusion, some of you might think that is a bad enough condition to have but a year later aged 15 I developed gastric issues having to spend a week in the hospital every 3-4 months. So back to blood tests, scopes  and biopsies and soon(ish) we had a diagnosis of Ulcerative Colitis over the next 7 years we tried a load of treatments steroids, azathioprine, Cellcept, foam enemas, Mesalazine and at the end an IV infusion that took a lot of paperwork on my doctors end but that I have no idea what it was before at the tender age of 22 I had to have a Subtotal Colectomy do to being refractory to treatment. This was the first time I ever thought I was going to die, prior to my surgery I phoned my parents from my bedside phone begging them to get the surgeon to see me because I was losing liters of blood out my bum (Or at least it seemed so) the surgeon was going to do the surgery on Monday (2 days)  I told him I would not make it to that and he decided to do it as an emergency operation the next day, this brought its own issues, the stoma nurse didn't work weekends so it was left to the surgeon to mark where my stoma should be placed and as I later discovered he marked it too low.

That said the colectomy started a stable time in my medical life, a time where for 2 whole years I was not in the hospital, a glorious and happy time for me. A time where I had no visits to the hospital and by all measures a happy time, I thought things might be turning for me but fate decided otherwise.It was the start of my issues with my stoma and over the last 6 years I have had 3 refashions and 1 stoma relocation as well as a few bowl twists which resulted in a few, week or more stays in the hospital. But the start of the of my issues with my stoma coincided with a new immune issue Immune ThrombocytoPenia aka ITP. Which is where your body produces antibodies against platelets which leads to them being destroyed in the spleen and liver. I went through the normal treatment options high dose steroids, IV IGg, Revolade and Romiplostim. For the first few months, my platelet count sat between 0-20  thousand when the normal is between 150-400 thousand, this caused me to have one or two-hour long nosebleeds and blood in my urine,  the first six weeks following my diagnosis was one week in the hospital and one week out. This was the scariest of my diagnosis because every time I would get petechia I would think I would have one of my hour long bleeds or if I had a nosebleed I would worry that it might not stop. I went through a lot of treatments the last being Romiplostim which didn't seem to be working I was raised and raise my dose to the maximum so they prepared rituximab but when I was in the hospital getting prepared for the severe suppressing of my immune system to be told the blood drawn while placing the cannula came back with a platelet count of 95,000 a count I had not had since before my ITP had activated, they repeated the test with the same results. So I was sent home and followed up on it has not been a condition without its ups and downs but I am and have been for a long time now stable, it was one of the few times when the light at the end of my medical journey was not an oncoming train.

ITP was the start of my second wave of immune issues as over the last 5 years I have developed autoimmune neutropenia, lymphocytopenia and sclerosing cholangitis. While I may not have a lot of neutrophils or Lymphocytes I am blessed to not catch more infections than I had before but when I catch one it can quickly overwhelm me and put me in hospital. This means that whenever I feel the start of an infection I have to get to my Dr and get the antibiotics.

In my next post, I will talk about my time in ICU which started in late December 2015 and had me waking up in the middle of January 2016 and the long journey of recovery and the issues that came from it