I've never written a blog before so I’ll start off with the basic stuff. I’m
Matthew Shapland, 20 years old, 21 in may and I
have just recently moved from Ipswich to live with my girlfriend and her
21 month old daughter who I have brought up since she was weeks old. The
purpose why I'm writing this blog is to get my friends and everyone else who
don’t seem aware of the dangers and factors of Cystic Fibrosis.
At the age of 5, I had my first operation on my nose for nasal polyps which are
fleshy overgrowths that grow inside the sinuses and block the airway for
breathing in and out of the nose. I also had another operation when I was aged
8 and 11. The fleshy growth is predicted to slow down when teenage years start
and fingers crossed I haven’t needed another operation to date.
The next operation I was advice to have was a gastronomy tube
called a “mickey” or a “peg”. This works being noticeable on the outside of the
stomach with a tube being inserted through the skin and through the stomach
wall directly into my stomach. This was used so I could have extra calories at
night time by being fed through this tube with high nutritional fluids ranging
from 500kcal to 750kcal via a pump. At the age of 16 I was only weighing at 6
stone. To keep the tube in place, I had to inflate a small balloon at the base
of the tube to keep in securely in the stomach. However, these can deflate by
leaking and unfortunately it deflated one
night and by the time I woke up and realised, the wound had closed up
and was faced with having another operation or to leave it out. I chose to see
how things go without it in, I’m now weighing at 8 ½ stone at 20 years old
which for my height of 5”7 is still underweight and makes my BMI at 17.6.
Until I got transferred up to Norfolk And Norwich University
Hospital from Ipswich Hospital, my lungs and other organs was always pretty
clear, it was my weight that was never picking up. I had only been at Norwich
Hospital 3 or 4 months when they told me I had picked up Pseudonymous assess.
This was treated with Colliston nebulisers which I had to inhale the drug 3
times a day by an electric pump for a 3 month course. At the end of the
treatment it was all clear that the bug had been removed from my lungs. A year
later the Pseudonymous assess appeared again in a sputum sample and I was then
placed on Tobramycin nebulisers which only cleared it up for a few weeks. In
October 2010 I was advised to have my first course of Intravenous Antibiotic
which concludes of having a long line cannula directly inserted into the veins
of my arm and injected with antibiotics. This completely wiped the Pseudonymous assess out for 5 months and was
found again in march. However, the attempt of Iv’s at home didn’t work due to
my veins being temperamental the long line blocked up and had to be taken out.
I have been on
constant nebulisers since may until
October 2010 I was going up for a routine check-up when I then got told
I had another bug called mycrobacterium tuberculosis which is a very dangerous
and difficult bug to get rid of. Since 2007 I have been working as a sales
assistant at Greggs The Bakers so I was advised to take 3 weeks off for an
intense course of intravenous antibiotics which includes 3 different iv
antibiotics in hospital, 2 nebulised drugs and 2 lots of oral tablets after
being discharged for at least 12 months. Whilst having these bugs on my lungs,
my CT scan show positive for damage, scarring and blocked air valves in both my
lungs and I can physically feel the affect when walking or even playing games
with my step-daughter. Ive been discharged from hospital since January 31st
and since then been having problems with my nebulised Amikacin. My symptoms are
sharp and sore pains in my throat, dryness and loss of my voice completely. On return
to the CF clinic on March 28th , my lung function had dropped a little
more than it was predicted. I have now been made an appointment 2 weeks apart
to keep a close eye on my lung function. On the happy side of things, I proposed
to my girlfriend on the 8th February and we are now trying for our
own baby which were hoping do not conclude us going through IVF. My weight has
also maintained itself which is an uplift for everyone including myself.
On March 18th, I completed a 10,000ft Tandem Sky Dive in aid to raise
funds for the Cystic Fibrosis Trust. I advise everyone to try this out.
It was absolutely amazing!!!!
Since being a teenager, I preferred not to rely on my parents for my care and
tried to be responsible and take all my medication, fitness and phsyio as well.
I would necessarily do all of these things all the time. But being worse than I
used to be, I now regret not doing those things as all I had in my mind is to
be like everyone else. Normal and able to breathe and exercise without coughing
up thick sticky mucus. I know that compared to some people I know I’m quite
lucky. If anyone has any questions or queries about anything to do with Cystic
Fibrosis then feel free to message me.
Thanks for reading
Matthew
