So, the problem with being hospitalised multiple times,
especially in a short space of time, is what it does to your life. It halts it.
Not that I had much of a life to begin with, but maybe I would if I had an
immune system.
Immune systems are so complicated, with so many elements
that need to be monitored closely. Just off the top of my head there’s, RBC
(red blood cells), haemoglobin, WBC (white blood cells), neutrophils,
lymphocytes, potassium, sodium, haemocrit, platelets, chloride, creatine,
immunoglobulins. And that’s just in the blood; there’s the organs which work in
conjunction with the blood, and/or create it; the lymph-nodes and vessels, bone
marrow, the spleen.
All in all, it’s incredible that all this shit, jumbled
together, works in a healthy person. It’s a wonder that immunocompromised
people, like myself, manage to go through any period of time without something
going wrong. And for me, when something goes wrong, other things do too. It’s
never a simple fix, and there’s always more than one thing to fight off. I go
into my GP with minimum two problems whenever I see him. Just after Christmas
2017 I went in on a Tuesday at 11am with a bad ear and what I through was a
swollen gland in my neck (I know now that this is a swollen lymph-node), the
next day I went in with a half-swollen tongue. It comes all at once and there
is no in-between.
I am so grateful when I have a clear nose, because I know
that soon I won’t. I also know that there are plenty of people out there with
worse autoimmune disorders than mine, and my heart goes out to you, but that
doesn’t make mine any less valid. What it does do, it makes me realise that I’m
not really alone, and somehow that helps.
I recently had a doctor tell me that I was the bravest
person she knew, because I’m always upbeat and taking everything in my stride.
And maybe that’s true, maybe I am upbeat, but I don’t see it as bravery,
although I certainly appreciate her compliment. I see it a different way, which
is that I just have to get on with it. It’s my lot in life, and it may be
pretty damn awful on occasion, but it’s the hand I’ve been dealt, so I must
play it. I cannot put a penny in the pot and buy a new one, however much I’d
like to.
Well, the blood results on Monday showed that my platelets
had dropped too, as well as haemoglobin and WBC. At about 4pm, with nothing but
my bag and the clothes on my back, it was suggested I be admitted. Suggested,
only because they can’t force me. I didn’t want to come in, but it was the best
option.
That evening my temperature shot up. It had been high
recently, that was true, but certainly not like this. 40.0. And when you’re
supposed to be around 37.0, that puts a little panic into the equation. Not for
me, no, I just wanted the paracetamol, and sleep, but for the nurses and doctors.
My body was bright red, a bit like a fresh sunburn, flushed looking, and I was
very hot. I had two occasions where I was freezing to the point of teeth
chattering, but mostly it was the heat. My friends and family will tell you, I don’t
do well in the heat.
Throughout the night, I was hooked up to various drips, but
with only one cannula that was going to be a struggle. So, after several stabs
they managed to get a second one secure, and they were off. Not once that night
did I have a moment without my ol’ pal Baxter the IV stand by my side, steady
and strong. I was hooked up to fluids, paracetamol, antibiotics, platelets, and
I’m sure there was more, all in an effort to get my abnormally high temperature
under control.
Every twenty minutes someone would come in to check the IV or give me some other medication. I was told by a nurse a couple days later that the other nurses working that night were all too nervous to let me sleep. I barely got a wink, so they achieved their goal.
Every twenty minutes someone would come in to check the IV or give me some other medication. I was told by a nurse a couple days later that the other nurses working that night were all too nervous to let me sleep. I barely got a wink, so they achieved their goal.
On Tuesday I had a CT scan which showed two swollen lymph
nodes, one in my neck, and one in my armpit, which I already knew about.
On Wednesday, it was my birthday. I can think of plenty
other ways to spend a birthday, but mostly just not being in hospital would
have been nice. My sister came up to visit and brought my laptop and DVDs, so
we had a wonderful afternoon, and my dad showed up at six with a selection of
cream cakes from Paul’s, my birthday cards and money from my Aunt, Uncle and
Grandma, and a voucher from my Granny. Thank you all very much, I’m sure it
will be put to good use.
But to top the day off, at around 5PM, there was a knock on
my side room door. One of the nurses poked her head in and asked if “we” could
come in. I said yes, and she opened the door, walked in with a cake, and five
or six other nurses, and all singing Happy Birthday! It was a really nice
touch. And a really delicious cake.
It was late Tuesday night or Wednesday morning, I think,
when I was started on Voriconazole, maybe even a little later. This particular
drug is an anti-fungal.
From the first IV dose of Voriconazole I had, my
temperatures started to go down, little by little. 38.2, 38.0, 37.8 lingered
around for a while. And now I seem to be fluctuating between 36.5 and 37.5,
which is great. Fantastic even, because not once on previous admissions has my
temperature gone down without the use of steroids. Ever.
Thursday was aimless. A long day, with no scans or trips
out. I just had a lot of naps and watched movies, and facetimed my sister.
But, Friday, Friday brought with it the promise of a morning
trip to Charing Cross Hospital, a partner hospital of Hammersmith’s. Time for a
Pet Scan. It was the same place I went to when I had my pet scan in 2012, I now
know.
Now, I’d completely forgotten how a Pet Scan worked. My
appointment was at 10.30am, and with transport, a nurse and I arrived in plenty
of time. And plenty more time we had to wait too. It turns out the department
was having trouble getting the nuclear isotope thing from the pharmacy, they
had several other patients waiting for the drug, so they’d be seen to first and
then it was my turn.
They finally called me in at around 12.30. I was put in a
little room, and waited. A little while later a lady came in with the injection.
You know something is not to be messed with when it’s in a metal box, and then
when she lifts it out, the syringe is encased in metal too. She very slowly
administered the contents of the syringe into my cannula, and then when she was
done simply dropped the syringe back in the box, from a height. I mean, this woman
originally had taken it out of the box like it was a grenade; slowly and
carefully. It would seem it is very dangerous to use these isotopes unless they
are injected into a human body. And then it was time to lay down for an hour, to
allow the medication to spread throughout my body, before finally having the
scan at 1.55pm.
The scan in itself only takes about 20 minutes, but you’re
lying on an uncomfortable bench, with your head in what resembles the scoopy
bit on an ice cream scoop, with specialised pads wedged around your skull to
stop you moving, and a strap across your forehead. Your hands need to rest on
your body, and you end up using what little strength you have to stop them
falling to the sides, despite the fact that you’ve had a giant piece of Velcro strapped
around them to help with this. It doesn’t help.
So, by the time we were done we should have already been
back at Hammersmith. We arranged transport back, and again, waited. We got down
to the transport lounge and finally our transport arrived. By the time we
actually left though, it was 4.30pm, I was tired, hungry, angry. My mum, sister
and life long friend Tabs were all waiting for me and had been since 3.45pm,
though why they couldn’t have picked me up when they went past Charing Cross,I’ll
never know! Haha! Got back to Hammersmith at around 5pm.
My scan results had beaten me back!
The scan shows more swollen lymph nodes, though they’ve
neglected to mentioned where and my spleen is enlarged (but we already knew
this).
The doctors have also theorised that I have a fungal chest
infection, which is why the antifungal medication seems to have dropped my
temperatures. It seems I’m just a big mushroom. They said they may do lung
biopsies to confirm, but I’m hoping it doesn’t come to that. That would involve
an endoscopy type procedure and I hated that experience.
I’ve now been put back on steroids, 80mg of prednisolone, which
is what I’ve been waiting for since Monday, and am hoping they do the trick.
As for any other progress, there won’t be any until Monday because
hospitals come to a sort of standstill at the weekend.
So, for now, it’s movies, medication and naps, and that’s ok
by me.
Speak soon,
Mushroom out. 
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