As much as I love the autumn and winter months, I have to say the
last couple of months have definitely been tricky for myself and my family.
- For the first week in October was admitted to hospital, as I needed my cyclosporine level increased as the level was lower than it should be. While, my bilirubin level (level in the liver) needed decreasing as the level was way too high, the normal level for a person is 10-20 while mine was 220, as you can see waaaay too high! After 8 days in hospital I was discharged, with a higher cyclosporine level *yaay!* and my liver level had only decreased to 150, but I was put on lots, and I mean lots of medication to keep this level decreasing at home.
- After being discharged, I was put on a high dose of steroids
(180) which has caused me to have lack of sleep, aching joints and bones everyday
(mainly my legs), shortage of breath, round moon face due to the such high
dosage of steroids, tremors which got can get so bad I fall over, feeling high
then low, lack of concentration, mood swings and just overall tiredness, this
doesn’t include the other 50-60 tables I have to take a day.
- I got back to school which I was overjoyed about, seeing mates
and learning! But after school everyday for this past couple of months I've had
to go to the hospital for some iv medicine through my line, leaving me coming
home with my mum or dad 6/7 or even later at night.
- I've also had a lot of school work to catch up with, but lucky
I'm all up to date and handing good essays as my results have been good and
teachers are very pleased with my progress!
- On the 23rd of October I had to have surgery (liver
biopsy) which wasn't pleasant at all, as it was done under local when they told
me it was going to be under sedation. I had this liver biopsy done as my
bilirubin level was still high around 190 and they wanted to see what the
problem was with my liver.
- Due to my bilirubin level being so high, I have developed jaundice.
This means my eyes and skin are extremely yellow making me look like a Simpson
aha! But lucky the gods have granted us with makeup to cover it all up!
- During the October
half term, I woke up in the early hours of the morning in agony. Pain all over
my body, the pain was that bad I was crying, which if you know me well, isn’t
like me at all. So I got rushed to hospital by both my parents, to find out I
had an infection around my line, a high temperature and to get rid of the pain
they put me on morphine which made me go crazy aha! I was kept in over
Halloween, which was a huge disappointment to me as I had plans to go see one
of my best friends who lives up in Norfolk and I had plans later on to spend
time with my other best mate to dress up and have some fun, but hay ho I guess
there is always next year!
- Once I got my biopsy
results back, it was confirmed GVHD (graft
versus host disease) which they thought it was all long and they now have put
me on a new medicine which I have started on the 15th of November,
this involved me having an injection twice a week, and so far has been working
well *yaay*!
- Now it’s the 28th
of November, and yet again I’m in hospital with 3 infections, oh the joys *note
sarcasm*! I again woke up in a lots of pain and with a temperature in the early
hours of Sunday morning, and got rushed off to Epsom hospital with my parents,
to find out my Hickman line (the line that was in my chest) had two infections and
they found another elsewhere. The doctors put me on two antibiotics to get rid
of these infections at Epsom, then I got transferred to the Marsden, and on Wednesday
I went down surgery to have my Hickman line out, which went well! However, I am
very devastated as that line has served me well with all the medicine that has
gone through it and blood tests they have been able to use it for too!
- Today I have been practically a needle cushion as they have
tried to put a cannula in me 5 times, I’ve had 5 bloody needles, which I can
tell you has been very painful *ouch*! And they have plans to put a pic line in
my upper arm for Monday under local which I’m not looking forward to at all,
but hay ho, if it’s going to help me with iv medicine and blood tests I don’t mind
at all!
Sorry its sort of a down and sad blog but I just thought writing
it in a blog would get it all off my chest, hopefully everything will be better
next month as its Christmas, which I’m so excited for :D!
How have your past months been? Hopefully much more exciting than
mine aha!
Arabella
♥