On
November 14th 2014, i got admitted onto pearce ward that day. i was struggling
a little at home but mainly felt tired and easily breathless .. well, more than
what is now my usual.
Sue the
physiotherapist consultant decided it would be best to put me straight onto the
V60 non-invasive ventilator with 35% oxygen rather than my usual 28% oxygen.
the
relief i felt going on it, made me worry. i realized how much i was struggling
on oxygen now. i kept trying to tell myself that it was just because of a
virus.. i must be growing a virus!
my oxygen
levels were still my regular and heart rate was only slightly raised. i didn't
feel any cold or flu type symptoms.
That week
i slept a lot, ate very little and slept some more. Due to not eating very much
i started feeding none stop 24 hours a day. Blood test results came back and my
iron was very low, albumin was very low but my infection levels weren't too
high! Virology results came back not too long after and i was right, i was yet
again suffering from rhinovirus!
Never
have i ever heard of someone getting rhinovirus as often as i have; it was
literally every admission it would be a given that my virology results would
come back positive for rhinovirus.
Rhinovirus
is a not so very posh name for the 'common cold'
It's
harmless to someone with an average or good immune system but for someone like
me with Cystic Fibrosis is likes to cling to me for dear life and keep
returning, it usually clogs my lungs up with a RIDICULOUS amount of sputum and
that usually makes it very hard to breathe just at rest.
However,
like i said, i didn't have any cold like symptoms and my sputum load was no
different to my usual. It was odd.
I didn't
really care very much, i was just so very tired and weak. This we put down to
my iron and albumin levels being so low.
Easily
treated, lets whack some IV iron and Albumin up and i'll be fixed!
WRONG.
Things
seemed to go from bad to worse as i started swelling due to water retention so
i was given IV furosemide, which is the IV equivalent to water tablets.
Easily
treated, lets whack that IV furosemide up and i'll be fixed!
WRONG.
The
Furosemide worked.. too well, it dried me up. Both my bowels and sputum became
very sluggish! infact, my sputum was like concrete and this brought upon
some really horrendous times.
I was
started on some laxatives to prevent a bowel blockage, which was the last thing
we needed at this point, but it was definitely on the cards with the way things
were heading!
I was now
moving no sputum at all and my blood gases and oxygen levels were not very good
at all.
It was
now, early December. I was feeling no better and if i was being honest with
myself, i was feeling a lot worse.
They sent
me for an x-ray and when i came back, i took myself to the bathroom, which is
where things took a dreadful turn. I was in the bathroom and working so much
harder on my breathing than usual and it scared me, i found myself gasping for
breath taking the 3 steps back to my hospital bed when i suddenly just couldn't
get the breath in any longer.
I was
coughing now but still not taking the breath in and the NIV felt like it was
making matters worse because i was working against it trying to get back into a
rhythm but coughing uncontrollably. My physio had heard me struggling and came
running in, realizing i was needing more help, she buzzed for assistance and
suddenly my room was full of different people. Nurses, doctors, pyhsio’s.
I
started feeling faint and dizzy now, still struggling for breath and coughing
being blocked off by sputum that was too thick to move. It was
suffocating.
My sats
had dipped to 52, heart rate was nearing 180 and they put 100% oxygen through
my NIV.
I was
getting tired now but i could feel that the sputum was moving so slowly but i
was nearly there with it. Just a few more coughs and i could get it up and
out!!
Finally,
i budged it and was relieved to feel the NIV fill my weary lungs with much
needed oxygen.
I was
exhausted and scared.
What had
just happened? Was this going to happen again?
I was
told they call it 'plugging off'. It's exactly how i described and how it felt.
A plug of sputum gets stuck in your main airways and prevents air to flow
through either in or out. This stops the sputum from moving which in turn
prevents you from getting oxygen in and essentially makes it bloody hard to
breathe. Harder than i ever knew it could be.
I was
thankful i had the NIV on as that must have been forcing some air in somewhere.
I know for certain that without that i wouldn't have been able to get the tiny
breaths in by myself and that petrified me.
I also
came to learn that it was going to happen again and again, and again and again
for the next two weeks i was caught completely off guard and would have these
plugging off episodes with no warning or way to prevent or control them.
All i
could do was push the buzzer and get help and support.
It was
coming to the end of my 4th week, my albumin was low, i was eating nothing but
a few nibbles a day, my feed was all the nutrition i was getting, i was
sleeping most of the day and now these plugging off episodes were getting worse
with each one that came next. I would black out a couple of times, the first time that happened i was lucky that i had someone with me that night. I had woke up in the middle of the night coughing and unable to stop for a breath, the nurses were in straight away to monitor my obs and support me and adjust my NIV settings accordingly.
But my oxygen levels just went lower as they increased the oxygen they were giving me, i remember looking at my mum who was looking as panic stricken as i felt, i just couldn't breathe anymore and i felt weak and faint and then i don't remember until i came back around being cradled by a nurse called jean!
I had my
mum or my dad stay over on alternate nights after that, i didn't want to be alone for
very long, and I always wanted someone to be around.
The
episodes themselves were of course scary but that's not why i didn't want to be
alone, i didn't want to waste time, i wanted to spend as much time with people
as i could because of the way i felt.
I felt
the worst i had ever felt and i knew this was not good. I kept thinking that i
was dying, that what i was feeling was me dying and the more i kept thinking it
and having all these other thoughts, i just had to know, i was driving myself
crazy.
I had so
many questions i wanted to ask and wanted to know.
I tried
to tell the people closest to me how i was feeling but it was hard to tell them
this, i wanted to protect them and i also didn't want to sound like i was
giving up because i wasn't!
This was
why i wanted to tell them, because i wasn't giving up.. i wasn't ready
yet so i needed people to know that this was how it was feeling so they could
do something or at least tell me i was wrong. I was telling the wrong people
though, my parents couldn't give me the answers as much as they would have done
everything and anything to be able to. I kept being told to stay positive and
not be negative by different people but it just made me more frustrated, i
wasn't being negative i was being completely and utterly honest and
genuine.
I
requested to speak to one of the doctors. I had to know, i was sick of second-guessing.
So Proff
Webb came to speak with me one lunchtime.
I
couldn't even get the words out of my mouth.
"I
guess, i wanted to ask if... i think i know what i feel but... i'm just
wondering.."
i had
been asking myself the question over and over for a week and a half now but
couldn't get the words out now the time had come to get answers.
why?
maybe
part of me felt stupid for asking incase i was totally wrong but i think maybe
i was scared incase i was right in what i was thinking.
"are
you trying to ask if you're dying?" Proff said.
