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.

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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.