Dear world,
I never intended to have a set routine of when I would do
my blogs, although I realise looking back my first three were written every 2
weeks to the day. Typical me really, I have to
be precise, living with Andy has rubbed off on me and I’ve now picked up his
OCD habits. But for the avid readers (of which
I’m sure there are hundreds) I apologise that I’ve made you wait that little
bit longer for this one.
Since going to the Royal Hallamshire at the beginning of
August I’ve really been struggling to maintain the positive outlook that has so far guided me through my journey. Mixture of
different things but mainly and most worryingly I felt my health really started
to deteriorate. To the point where I genuinely thought here we go, it’s the
start of the decline. It felt just like it did before I got blue-lighted into
hospital when I first got diagnosed. My breathing became really laboured and
intense. I struggled to concentrate; even not being able to focus on one of my
pastimes…Candy Crush. I have a slight obsession with it (I’m on level 1035 for
anyone who is interested – well I was off work for 9 months so what was I meant
to spend my time on?) The fatigue just wouldn’t shift and it was like any
movement I tried to do whether it was simply opening my eyes or getting up from
the couch took an enormous amount of effort.
When you feel like this, apart from the physical side
effects, the mental side is just as bad, if not a little bit worse. I really
wanted to snap out of it, especially as I felt like a real burden. Andy had to
do everything for me and I felt bad for my work colleagues as I felt like I was
letting them down by not contributing. I’ve never been one for relying on
people and all of a sudden I could see my life flash before me, being
pushed in a wheelchair full time, being washed and cooked for by Andy. It
wasn’t a pretty image at 31 I can tell you.
I genuinely really started to panic about the future.
I’ve never been one to take time off work but I must have been in a bad way as
I finally started to listen to the GP who told me to take time off. I wouldn’t
say I’m a total stress head (my boss Mike would disagree) but I do find it difficult
to switch off. I find my head is always full of so many thoughts that I feel
need doing right away. So when I am told to just rest and sleep as much as I
can, I find it one of the most challenging things ever.
If I’m totally honest my thoughts were also very much
centred about the chat I last had with my consultant about the referral for a
lung transplant. I clearly got each of the best parts from my parents, my dad’s
same sense of humour and my mum’s list writing and planning for the future.
Thankfully the humour part has helped but the list writing and planning for the
future is the biggest enemy to someone who is living with a timebomb. My mind
ended up going to a dark place.
Everybody's journey on the transplant list is different
but as a rough guide: 12 months from now to get on the double lung transplant list,
on average they say it’s anywhere between 1-3 years on the waiting list. Then
if you are successful enough to receive an organ, actually surviving the
operation and then being lucky enough to avoid rejection (where your body
rejects the new organ) they only then guarantee the new organ for 5 years
after.
Optimistic Gem thinks I might reach 40, negative Gem thinks
I might be dead in 3. I told you I had my dad’s dry sense of humour! I can
laugh about it now as I’ve had time to process it and I’ve come out the other
side with my typical analogy of, I could get hit by a bus tomorrow so what’s
the point in worrying about something you have no control over. That is the
epicentre of what I believe anyone who has a progressive disease fears the
most, not having any control.
Before this diagnosis I never had any thoughts about
organ donation, and why would I? It didn’t affect me,
and why would it, being young, relatively healthy (I was in the correct BMI
category for my height and weight) it’s not something that I ever thought I
would need.
I’ve always been a daddy’s girl and normally follow his
opinions on life, hence why I’m a Leeds United fan (for my sins) and not
Manchester United like the rest of my family. He had very strong opinions about
organ donation; in a nutshell he was totally against it. He thought it was
messing with science and would say “your time will come when it’s meant to,
don’t let people try and interfere with that”. I remember when my sister and I
were very young, we had been allowed to sit at the adult table at one of their
many dinner parties, as long as we were on our best behaviour, and the topic
started about organ donation. A random thought to remember I realise but I
remember dad saying that even if Leah or I ever needed an organ he wouldn’t
give it to us.
Since it’s come on my radar I’ve been very intrigued to
find out what peoples thoughts are regarding organ donation. I’ve found it to
be a mixed reaction, some people instantly say yes without hesitation, (rare
cases) some say no (more than yes) and then you have the unsure folk (mainly
everyone, including my own thoughts prior to PH). The general consensus I’ve
heard is the fear that you as the donor are worth more dead than alive or “I
would happily donate, but only to someone I know”. If only life could be that
straight forward. Granted in the case of a kidney transplant it’s likely that
you would have a higher chance of getting that organ from someone you know, but
for an organ that you need someone to have died for to be able to receive it,
the chances are (in my humble and non-results based opinion), is that it is
extremely unlikely.
I appreciate this topic in some peoples’ eyes is
controversial and like religion and politics is probably not a topic for the
dinner table. But as its national organ donation week I just thought I might
highlight a cause that I, you, someone in your family, a neighbour or even your
own worst enemy may be affected by at some point in your or their lives, and
you will never expect that it may happen.
Now anyone who has ever worked with me or knows me well
enough will know I love a good competition or a quiz. So I have a question for
you, how many people are on the transplant list in the UK? Go on I dare you to
guess.
1,000, 3,000, 5,000.
One of my other traits is I struggle to keep things a
secret so I’ll tell you the answer, it’s 6933.
Another guess for you how many people have had a
transplant since April this year?
100, 1,000, 10,000.
Real answer is 1482.
Final fact for you: 3 people a day die who are on the
transplant list. These figures aren’t there to scare you or make you feel sorry
for me or anyone who is on the list. I only thought I would share the facts and
figures as I didn’t know these figures beforehand and the results really
surprised me.
It’s interesting to know if we lived in France or I think
any other European country, the rate of transplants carried out is a lot higher
and the timescales of actually receiving the organs are a lot lower than in the
UK. Why you may ask? Well in the UK we have to opt in to be on the organ donor register, whereas in France and other countries you have
to opt yourself out if you don’t want to be on it. Although from my research, I
have found that Wales are going to trial it the continental way and depending
on how successful that proves, England hopefully may follow suit.
I could harp on about the research I have found out but I
don’t want to bore you all and I’m conscious I need to get the tea on soon. So
this is the best website I have found to answer any of your questions you may
have about how you can register and how donation actually works https://www.organdonation.nhs.uk/about-donation/
One final point is if you do decide you would like to
donate your organs when you no longer need them, something that is as important
as registering is to tell your loved ones. Should you ever be in a situation
where your loved ones need to make the decision, it would be so much easier for
them if they know your wishes, especially at what would be a very difficult
time.
Had it not been for being diagnosed with PH I would
probably never have even thought to register myself on the organ donor
register. But as maybe one day I might need to be on it, I would be totally
hypercritical if I were to just to take someone else’s organs and not donate
mine. I was surprised to find out that even though my heart and lungs are in a
bad way, I can still donate my other organs. From tissue to skin through to
liver, heart valves and bone and you have the complete choice of what parts you
want to donate. So if you didn’t want to donate your eyes but were happy to
donate a kidney for example you can do that. Since being diagnosed all of my
family even my dad would you believe, has signed up to become a donor. So if my
stubborn dad can change his mind, anyone can!
I’ll leave you with this final thought:
If you needed an organ transplant would you have one? If
so please help those in need of a transplant by opting to donate organs and
tissue.
As always thanks for reading.
Gem xx
