Numbers

Numbers are my life,

They dominate every aspect of my life,

If I can go outside comes down to The roll of a dice,

This is my life, this is my strife.

I used to smile more than I do,

I used to be happy, ignorance is bliss,

These are not the days that I miss,

I miss those days taken from me,

Missing my brother’s wedding cut me deep in my soul.

Numbers are everywhere especially these days,

We hear about all the numbers everyday,

These numbers are overwhelming,

Numbers that represent lives effected,

They are thrown about just matter of fact.

My number of friends has expanded,

As my heart swells, with affection I’m shown,

People who want to join me in this fight,

Those who want to be part of my life.

Thank you to everyone,

You mean so very much to me,

I hope I don’t disappoint, as I try my best.

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