A Meningitis Survivor

Fire, Rock and Ice

Iceland’s Wilderness Challenge

For Meningitis Now

Thursday 27th July to Monday 31st July 2017

From Thursday 27th July to Monday 31st July 2017, I am intending to participate in a 3 day (5 days in total) trek in Iceland, called “Iceland’s Wilderness Challenge.”  This trek is to raise funds for the United Kingdom based Meningitis Charity, Meningitis Now.  Meningitis Now provides support for all of those affected by Meningitis, whether through disabilities caused by the disease, the psychological impact of having Meningitis, whether on the patient, on a loved one, or both.  The funding also provides support for those who sadly, have lost loved ones to Meningitis, through bereavement counselling, financial support or both.  The funds raised also go towards vital research into new treatments and vaccines.

 

This is my story:

 

On Tuesday 15th September 2015, I had minor corrective surgery on my left ear.  Prior to the surgery, it was explained to me about the risks during and after the surgery.  One of the post-operative risks mentioned was Meningitis.  Even though I knew it was a risk, and I signed the consent form acknowledging that risk, I never thought for one split second that it would happen to me.  But just 5 days after surgery, I was readmitted to hospital with Pneumococcal Meningitis, a form of Bacterial Meningitis.

 

The recovery from the initial surgery was strange to say the least.  For about 2 days after the op, I was high as a kite, and practically no pain at that stage.  By the Saturday, I had developed pain in the left ear, and a little bit of bleeding came from the ear canal, which is perfectly normal for that kind of surgery.

 

On Sunday, 20th September 2015, just 5 days after surgery, I woke up that morning, feeling very tired and sluggish.  I went and lay down, and I soon developed a headache, and shortly afterwards, started vomiting.  My sister asked if I was alright, to which I replied, “I’ve got a bit of a headache.  I’ll be alright though!”  But after I threw up again for a second time, and with the headache getting worse, I said to my sister, “I think you’d better call the doctor.  It’s only 5 days since I had that operation.”  By this point, I would say that I was starting to drift in and out, so from this point on, I am having to rely largely on what my sisters and others told me.  My sister immediately called an ambulance.  The paramedic gave me his name, as did the ambulance crew when they arrived, and the doctors and nurses at the hospital, but I have absolutely no recollection of names or faces.

 

I do remember the ambulance man asking me if I could walk out to the ambulance, which I did.  I do recall parts of the journey to the hospital, but I am told that is when my condition really started to deteriorate.  Blood pressure going sky high, and developing a fever.

 

The next thing I remember is in Resus, having these pains down my back, and I am trying to sit up, and I hear a voice saying to me, “No Barry, you can’t get up.  You’re not well.”  I was unaware that voice belonged to one of my sisters.  I lost count, but I think it was about 5 or 6 times this happened (that I could remember anyway).  I’m also told that I was becoming very agitated.  The next thing I remember, is waking up in the Intensive Care Unit.

 

I had been told that I was put into an induced coma and intubated; in other words, put on to a ventilator or respirator more or less immediately after Meningitis was suspected.  I was unconscious for around 24 hours.

 

It had initially been suspected that the Meningitis had come from the ear that had been operated on 5 days previously, but my first CT with contrast scan (while unconscious) apparently showed no signs of infection in either ear, so, like many other cases of Meningitis, the cause is, and as far as I know, remains unknown.

 

After I came round in ICU, I started throwing up again, this time due to the tubes down my throat and nose, and I was quickly taken off both.

 

By now, although very tired, I had come round by this point.  Doctor came and spoke to me:

“Barry!  How are you?”

“Uh!  I’ve felt better!”

“Barry! Where are you?”

“Uh!  I’m in the Royal Victoria Hospital.  And I think I’m in the Intensive Care Unit!”

“Barry! What day is it?”

“Oh!  The only thing I can tell you is that I was admitted on Sunday.  So if you want me to pick a day, then I will say Sunday!”

Doctor laughs and says, “No, it’s Monday!”

I ask what time of the day it is, expecting him to say that it was about 11:00 at night. “It’s just gone 12:30 in the afternoon.”

I replied, “So there’s a day gone!  Just like that!”

 

The doctor didn’t ask me any more questions, because I think he knew I was aware of where I was, what was going on and why I was there.  I was also very tired, and it was a major effort to think, never mind answer questions.

 

I was to spend 11 days in total in hospital, 2 of them in Intensive Care.  I was on a cocktail of various IV antibiotics for 9 hours a day.  I also had a further CT scan with contrast, 2 days before I was discharged to ensure that the treatment for the Meningitis had done its job.  I also had a Lumbar Puncture (spinal tap) a few hours after regaining consciousness, and this is where diagnosis of Pneumococcal Meningitis was confirmed.

 

That being said though, the first few days in hospital I think I can only describe as being a daze.  I remember bits and pieces, but not everything.  For example, in ICU, I could only tell you the name of one of the nurses who looked after me during the time I was awake.  Doctors and nurses did tell me their names, but I could only remember the name of one.  During my recovery, all I wanted to do was sleep.

 

But so many people had sent get well messages, that I wanted to reply personally to each and every one, and it took weeks for me to reply to everybody.  I might have replied to one or two before I would get tired, and my mind would go blank. But even after I got home from hospital, I was still battling the extreme tiredness.  There were times I wanted to do something, and I couldn’t, and there were times that my frustration boiled over.  I have to say this, that without the wonderful support of my sisters and their families, I do not know how I would have got through it.

 

I was to go on, and make a full and complete recovery with no lasting issues that I am aware of, although I did initially lose some hearing, and my taste buds were affected for a few months afterwards.  But again, I recovered from both.

 

I am acutely aware that there are others out there who have experienced a much more difficult and much longer recovery than me. Others have been affected by sepsis where a rash develops, gangrene sets in, and sometimes results in limbs being amputated in the more serious cases.  In some cases, it can result in extreme disabilities, paralysis and brain damage.

 

And of course, we cannot forget those who do not make it.  Around 10% of all of those who contract Meningitis sadly succumb to the disease.  Pneumococcal Meningitis, which is what I had, the death rate is closer to 15%, making it one of the deadliest forms of Meningitis, behind Meningitis B.

 

When I was in hospital recovering, I read stories of those who did not survive.  Particularly upsetting, were the stories of babies and young children who lost their lives through various forms of Meningitis.  This may sound strange to some, but it did at times, make me question why I survived and others didn’t.

 

 

The charity that I am raising funds for, Meningitis Now, provides support for all of those affected by Meningitis, whether through disabilities caused by the disease, the psychological impact of having Meningitis, whether on the patient, on a loved one, or both.  The funding also provides support for those who sadly, have lost loved ones to Meningitis, through bereavement counselling, financial support or both.

 

The funds raised also go towards vital research into new treatments and vaccines.  Over the last 30 years, Meningitis Now, it’s predecessors (Meningitis UK and the Meningitis Trust), among other Meningitis charities throughout the world, have provided funding into research which has produced more effective treatments in treating Meningitis.  Funding has also gone into development of effective vaccines into various strains of Meningitis, such as various types of Meningitis A, C, X and Y.  But even with that said, there are still many, many strains to which there are currently no vaccines available, and continued research is needed to produce new vaccines for those strains.

 

As it stands in the United Kingdom, vaccines for Meningitis B (sometimes known as Men B or Meng B) are only available on the NHS to those aged 2 months, 4 months and one year.  There is a campaign underway to expand the Meningitis B vaccine on the NHS to all those at 11 years and under, and to those adults with health problems who would be considered at increased risk.  It is a campaign that I fully support, and am proud to have signed the petition.  I, like many others, believe the Meningitis B vaccine will make an enormous difference to the numbers contracting Meningitis B, and in turn, will eventually bring the death rate down.

 

Meningitis Now is entirely funded by donations (private and public) and through various channels of fundraising, whether through coffee mornings, cake sales, jumble sales, car boot sales etc., though sponsored walks, treks, hill walking, mountain climbing, triathlons, marathons, half marathons, and fun runs etc., among many other initiatives.

 

So, why am I willing to do this challenge?  Because of my own experience of Meningitis, this challenge has become very personal to me.  I have no doubt that the research previously undertaken to find more effective treatments, certainly at least played a part in saving my life, as well as that of many others. Simply, I want to try and give something back.

 

The trek is at the moment, still in the planning stage, but once details are finalised and confirmed, I will be putting up a Just Giving, or Virgin Money Giving page, and I will be asking for your help.

 

Iceland’s Wilderness Challenge

Discover Iceland – Ice, Rock & Fire!

Iceland Trek letterbox

 

For details of “Iceland’s Wilderness Challenge” for Meningitis Now, and the planned itinerary, then please go to:

 

https://www.meningitisnow.org/support-us/all-events/icelands-wilderness-challenge/icelands-wilderness-challenge-itinerary/

 

Thank you.

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