Where to begin? First of all I do
apologize to those who were reading my blog that I have not kept up
with it. Shortly after my last February entry I went to see the
doctor and they advised me that I was diagnosed with Cushing's
Disease. Since then I've been working hard to make sure I have enough
funds for my leave of absence from work and doing a lot of research
and now recovering from surgery.
To begin it starts out as Cushing's syndrome
and in this link if you go further you'll find the description of
where a pituitary gland tumour, benign can cause Cushing's disease.
This is what I was finally diagnosed with after two MRI tests and
other blood work.
The basics of this to put it simply are
that my pituitary had a growth on it which then in turn caused my
gland to over produce cortisol and other hormones over the course of
who knows how long, we estimate about 6-7 years and therefore caused
my diabetes mellitus type 2 (the diabetes we know to be common
regarding blood sugar), not to be confused with diabetes insipidus
(which I will mention later) among other things such as my weight
gain, migraines, floaters in my vision, etc.
What I was told , admittedly frightened
me, is that I would undergo surgery for this in order to cure it.
It's the one cure that is known to work aside from in some cases
pills or chemo as last resorts especially if the patient decides not
to go for surgery. 99% of surgeries however go well.
I've been on medication for Diabetes
type 2 for over a year now, since December of 2016. I've gone down
part time at my job because of the stress etc. The cause of the
tumour or growth is unknown and there are actually many people out
there who have them who don't show any symptoms and have a regular
normal life with no issue. However in my case I did when I suspect it
got to be big enough to cause pressure on the gland itself to start
secreting extra hormone levels.
So months have gone by in preparation
of this possible surgery. It was inevitable. And so came June 25th
whereby I was admitted to hospital for the surgery at 6 am. To start
they did an MRI and by 7:50 I was in the operating room and holding
onto the doctor's hand as they put me under and assured me that
everything was going to be OK. I didn't really want to go under and
it was more nerve wracking once I got there and it was in the works
than it was in the months or weeks prior. I was told of course about
one to two weeks prior all the risks that may happen, including death
and where the tumour was etc that might happen.
The tumour was on the right side and I
was told that the pituitary gland, for those that don't know, sits
right under your brain really and kind of in the middle of your
carotid arteries and in front of and just under your optic nerves.
Therefore if one of those arteries were cut and the tumour had been
attatched I could have been dead, on the other hand if it had been
putting pressure on my optic nerves and they had cut there I could be
blind. I could also get a Cerebral Spinal Leak from the surgery where
if there was any little pin prick of a hole then I'd get leakage of
brain fluid and could also get Meningitis and also could die. So far,
I'm still here.
To got through what I have has been
frustrating. I'm now going to go through the details from waking up
and onward. So I woke up in observation, I recall them saying my name
and talking to me and telling me things were ok and going through a
series of being asked my name, where we were, why we were there and
to hold my hands up, read off and eye chart, lift my feet and tell
the date. I was woken every two hours to do these tests and to take
blood. I recall the first waking of being disoriented from the
anesthetic and everything being a blur and people talking to me and
saying my name and to open my eyes and my parents being there. I
remember asking for my owl to cuddle and that I wanted to sleep. I
remember also throwing up at least once at that point.
Day two. Still disoriented, still going
through tests. I could drink at that point. That however did not go
well. I threw up a second time, my stomach had been filled with blood
and I literally spewed it everywhere. The nurses however were right
on it and three of them were to my aid to clean me up and make sure I
was ok. I had a sling around my nose to keep in all the mucus and
stuff from the surgery. I was plugged into a catheter still also and
they were monitoring my urine. Why you ask? Imagine this, they go
into your brain, poke around, remove a growth that's been sitting
there for years, imagine it kind of like a parasite that's been
telling your brain to make x amount of hormones all this time. So now
it's been removed and now your gland is like where did it go and what
do I do? Now there are two parts of your pituitary. A front and back.
The front is where the growth was and none of the gland was luckily
sliced off apparently and that's where the cortisol etc is made.
However there is a hormone called ADH that controls urine output
through your kidneys. If this is not working your kidneys suck up all
water and drain it out no matter what not just the bad stuff and the
sodium etc, everything. Though that part was not actually touched it
was kind of, how shall we say, tasered or zapped.
Day 3. I was able to eat. I was able to
sit up and do stuff a bit but I did throw up a third time in the
morning the remainder of whatever blood was in there. I also had the
sling (the padding or gauze wrapped around my head and under my nose
) semi removed from my nose and the balloon that was put up there
holding it all open was deflated. I still had some mucus and blood
but it was healing. I was then moved also to another room as I was
not in intensive care as much. While I was in main observation I was
unable to sleep well. The two hour testing turned to every four hours
but I of course had the complaints of other patients, their families
as well. It was not pleasant. I had visitors but was still groggy
and sleepy earlier in the day and later in the day they nurses gave
me a wipe down and had me get up to walk as I also had these special
cuffs on my legs to keep me from losing circulation. I was able to
take a nice little walk around the ward.
Day 4. I was able to be wide awake,
stand up and walk around. I had a visitor and was able to do some
stuff. I was definitely able to eat by this point though small
amounts I actually got used to hospital food which was not bad at
all. They still had me doing tests and they still had me hooked up to
the catheter. I was able to take a shower finally.
Day 5. I was able to dress in pjs of my
own, have the catheter out and a full proper shower again. It seems
that my urine at the time was doing ok as was my sugars. They were
monitoring my medications etc as well to regulate it. Now I was on
certain meds which I am continuing called Cortef. I will speak more
on that in a moment.
I had the doctors see me every day to
check in with me and by Saturday I was able to go home. It was a very
hot day and one day before Canada day. I am not allowed to lift
anything more than 20 lbs, I am not allowed to bend over. I have to
watch what I eat, take my meds and I still wake up a lot. I was
prescribed my diabetes meds as usual but Cortef is to replace
gradually and make my body make up for the cortisol that is now
missing as they made it go down from 400 to 40 in like the first two
days due to the surgery. The complication with this is that
originally the pharmacy read the prescription wrong and I was on only
two a day where I should have been on four a day, so I was exhausted.
I was dizzy and tired and the heat on top of that. It was horrible.
Now after my parents left, I was seemingly ok, they left on the
Monday morning and the temperature started going down. However
another complication became apparent on Thursday. Diabetes insipidus
which as I said earlier has nothing to do with the sugar in your
blood but your urine output. Peeing every 30 minutes what would seem
like a small bucket and ending up filling a 24hr urine jug in under 8
hours with diluted and near clear like water urine is not a good
thing. Now this is week three of being out of hospital and I'm now
doing more blood tests and on special ADH pills to combat that. The
weather has also been trying as it's been very hot here where I am
and I do not have an AC unit. I also had the concern of being alone
and having to do certain things to avoid a CSF leak which I now have
determined that it might actually be a cold or allergies for what
seems to be a bit of a runny nose , likely cold or just simply due to
the crusting and the plastic in my nose still and stitching that I'm
sneezing 40 times a day literally. To determine a leak I would have
to taste salt or metallic, and have puddles running down my throat or
through my nostrils. Neither of that is happening. Concentration
would have been an issue and vision and balance. As well as pain,
such as headache or in the neck. None of that is happening either
with the exception of sitting too long.
So there you have it thus far. I will
be off at least until end of August and at most end of September.
It's still trying and there will be more tests and things to come.
July 26th I get the plastic and stitches out hopefully and
then as instructed further rest. I feel all I've been doing is
napping and trying to catch up on sleep and though others said I
would be wanting to go back to work sooner , I find that doubtful
with all the things going on and things I have to do and take care
of. Keeping myself occupied has not been an issue but I must say,
though I don't mind the quiet sometimes, I do miss actually talking
to people about things.
More to come later. I will try to keep
this as updated as possible, when I can and at times that I am well
enough to do so.
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