So I found myself becoming really ill at home. I was already on a
course of 2week intravenous antibiotics when 11 days in I felt unwell
and ended up getting a third antibiotic added to my list to take . while at
home on my IVS (antibiotics via the vein)
I began to get more and more unwell. I was also very emotional. I had a
high temperature, sore when I breathed and coughed, I was breathing very fast
than usual, I was sleeping a lot and I wasn’t able to walk to the bathroom by
myself. My mum was having to come in and make me something to eat even though I
had began vomiting. I would still try and eat and drink something. My mum would then
help wash me in the shower. I would just sit in the shower chair while she
washed my hair. I felt like I had no energy. I began to worry…was this the end
for me. I have always known with cystic fibrosis that all it takes is one final
infection to kill you and to me this felt like I was dying. My mum was there
putting my pyjama bottoms on and I started crying as I had been doing plenty of
for the past 3-4 days and I said mum I think im dying. She just looked at me
and said right lets finish getting your dressed and into bed.
I decided that my antibiotics weren’t helping enough and that I had to be
admitted to my hospital. I got up to hospital and my temperature was 39degrees.
I then explained to my 2 best friends what I had said to my mum and how
concerned I was with how I felt. It just didn’t feel like any other infection.
When my cystic fibrosis team came on shift on Monday they
took a swab of my throat. I also spoke with my Psycologist saying how I was
feeling. I cried more and said I am scared and I have never felt as ill as
this, is this my time? She reassured me that they didnt think I was at my dying
stage. The next day it came back the swab had detected flu and that would be
the reason why my infection blood levels were also so high and I felt the way I
did. I was relieved that I was explained why I felt so ill yet I knew the flu
is still very serious for someone of my stage of a terminal illness.
The week I was at home before I came in with the flu I made a video which I haven’t shown to
anyone. In it I am crying and I begin to question people in life. And they do
say when you are at your most vulnerable time you do think things like this. I
started to question that how come when I am so ill there are certain people in
my life who aren’t there for me. People who when I am well I would bend over
backwards for or see on a weekly/monthly basis. Those tend to be the people
that when I am ill I don’t hear from. Do they think “ah its just another
infection, she will get over it” don’t they understand that I am at the end
stage of my illness and that everytime I get an infection I am nearing the end
of my life. If they don’t know that then why ? I surely have put things clearly
and openly to them. Don’t I mean as much to them as they do to me?
My closest friends were coming to see me and it was horrible felt like all we done was cry. I kept saying im not getting better i feel like im dying. We were all terrified. They were there to wash my hair in the shower, listen to my concerns , hold my hand and cry with me. Some people never have friends by there side at times like this and i am so appreciative of that. They had to be so strong but i felt when i cried they cried so then i could cry some more it felt like it balance out well. I wasnt my jokey self, i had nothing to joke about, nothing to look forward to, nothing to really keep me going. I know it must have been awful for them to see my personality not coming through each time they seen me. but despite that the still came and helped me through!! This hospital admission also brought me closer to my mum she has been there for me tremendously doing everything for me at home and even managed to drive to the hospital herself too. Seeing the worry in peoples eyes has been hard but knowing they were there to help me was the only hope i had, i had no good health, no guarantee what was happening but i had people that bloody loved me. I love my bunch of friends and my mum so much for all they done. I felt i got closer to my dad too when he was visiting me which was nice. There were people -not a person- but people who made very little effort and i will have to try and deal with that some how.
So where am I now. I was in hospital for 19days. In that
time I had started using a machine called Bipap over night. It’s a Non invasive hgventilator. Not only do my lungs struggle to process oxygen it now has trouble
getting rid of the co2 (carbon dioxide) so this machine helps me take a deeper
breathe and get rid of the co2. The hospital stopped my antibiotics after being
on them for 4weeks. They then tried to get the correct setting on my bipap by
testing blood from my artery to see if my bodys level of co2 was lower. I got
home on Thursday 9th july. They said I should come back to hospital
on mon or tue to get a blood test and possible adjust settings again.
However being at home I realised how much my body had
deteriorated I no longer could do anything for myself I made myself a cup of
tea and that was all I could do the whole day. Friends and family were having
to come in and cook for me and get me ready for bed. At night being by myself
my anxiety was through the roof. When I coughed loads my oxygen level would go
really low and it felt scary. I was also using this new bipap at home for the
first by myself. I began to feel quite ill and confused and it could have been
because my co2 level was still high which can be dangerous as it becomes like
poison in your blood if it builds up. So I had to go back to hospital on the
Sunday night.
My CF (cystic fibrosis ) team then had a discussion and decided that they
thought I still had a chest infection and that’s why I was still very short of
breathe and my co2 level was high and that the bipap wasn’t doing is job as
effectively as it should be. This was a sort of relief to hear they were
putting me back on IVS as it meant that possibly this wasn’t deterioration this was just an infection they
could get rid of and i might improve. HOWEVER…it did kind of annoy me that
during my last hospital stay they had took me off my antibiotics which looks
like they done it too early. When I look back, when they did stop I did get
worse afterward but because they told me I didn’t have an infection I just
thought it was because my lungs were more damaged. I could have been over this
infection had they of left me on my antibiotics for longer. in turn I would have
struggled less and not have had high stress levels thinking my life was nearer
its end than it actually was. Fortunately now i am home on this new antibiotic with 10 more days to go of it and it is clearing this infection up nicely. Since being home i have made myself lunch and dinner, brushed my cat, tidied up a bit things i have dreamed of doing the past few weeks. i am feeling a lot more like good old LISA :D
So to recap this has been the worst and most scariest
hospital admission. I have been bed bound for nearly 6weeks and my body is
deconditioned and weak. I don’t know if I will get back to my usual self where
I am out and about all the time. My spirits have been low knowing I have been
so ill and that I may never improve like I normally did after hospital stays.
But lets see what this new antibiotic continues to
do for me. I may not get back to how i was but i can be sure im not going to be as bad as i was..well until the next infection :(
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