Dear
world,
My
new title for this blog is not about me confessing to being a secret Ronan
Keating fan. In fact I don’t know
if I can stand any other pop star less, just seeing his white pearly teeth give
that cheesy Irish smile is enough for my skin to crawl. So you’ll be pleased to
know this blog isn’t about the boyband idol himself, instead it describes the
last few weeks of my life.
As
you may remember from my first blog, I work in recruitment and whilst it
definitely wasn’t my dream job aged 4, when I was aspiring to be a ballerina, I
still love the job. Anyway I’ve done it 8 years and I actually do feel like I
have my dream job (well sometimes). It’s definitely the champagne and
razorblades world we all describe when in recruitment, but even the lows (which
have been plentiful, after all I started just before the recession), have kept
me going. Recruitment has definitely taught me a few things: resilience,
persistence and to be thick skinned. All of these qualities, (as I like to see
them) have probably supported me when first being diagnosed with PH. So far I
feel they have held me in good stead. Well that was until a few weeks ago.
To
be told by your consultant that one day the tablets will stop working, you know
that at some point your body will give in, but you don’t know when, so the
tiniest signs of not feeling “normal” you start to panic. It’s happened a few
times where I get that bit more breathless or have less energy and everything
becomes much more of an effort. Luckily each time there has been a reason, I’ve
overdone it or picked up a virus/infection or even the weather (and I’m not
being a typical British moaning about the weather here, it may sound unusual
but it can genuinely really affect PH sufferers in both warm and cold weather,
and unfortunately neither are particularly helpful to our condition). Now
granted when I was younger I probably was described as a hypochondriac, but
being slightly older and maybe a little wiser I’m learning when my body is
trying to tell me something. And the last few weeks my body has well and truly told
me to take a break.
I
had noticed a few weeks ago that I was truly exhausted; this was a new level of
tiredness. In fact I can’t even call it tiredness it was extreme fatigue.
Someone described me as looking “dead behind the eyes” which isn’t the nicest
of compliments to hear I can tell you, but it probably explained what they saw.
I literally couldn’t function, everything was a chore, even reading was
difficult. I’d re-read words over and over again. Now as we know I am a
believer of fate and I did keep thinking well at least it’s happening at the
right time as I have my 6 monthly review at Royal Hallamshire Hospital coming
up so I’m sure they will sort me out and tell me not to worry. It’s more than
likely the weird weather we are having which is throwing me off kilter.
6th August arrived and I had a
bad morning in bed looking ghostly white according to Andy (again the lovely
compliments just keep coming, good job I’m not one for vanity) and I had barely any energy to
claw back the duvet. But I knew I must, and in a weird way it was a comfort to
know I was going back to the consultants who know me and understand the
condition inside out. I let Andy drive (which showed how ill I was, as I’m the
control freak in our relationship and I’ll admit I am a typical back seat
driver) and we set off across the Pennines and Derbyshire countryside, along
Snake Pass. Thankfully it was foggy and I wasn’t faced with one of my greatest
phobias… Electricity Pylons. Lattice style Electricity Pylons to be precise,
which is ironic considering I grew up in a house that had a pylon at the bottom
of the field on our street. But me and her are still on good terms. We
respected each other’s boundaries, she didn’t move into my space and I didn’t
go into hers. Note that I am talking about a pylon being female, for anyone who
wants a more detailed version please contact me and I will happily share my
view point on female and male pylons. Also for good measure she was named
Audrey.
Anyway
I digress, we arrived at the
Hallamshire and I had the standard tests which
I am well versed at. I had an ECG, a walking incremental shuttle test (like a
bleep test) and blood tests. I then waited to see the consultant. I knew I had
walked the longest walking test I had ever done since going, which was 380m,
the highest before then on average was 250m. Now anyone just looking at those
figures would think great she’s doing really well, she’s improved quite
considerably. But what the figures don’t tell you is that I had pushed myself
so hard to the 380m that I almost collapsed. For the next few hours my heart
was racing so fast and my breathlessness was insane. I knew I had way over done
it. But I am a stubborn woman who is trying not to let this illness defeat me.
After
a short wait I saw one of the consultants (there are 4 in total) and if I could
spell his name I would but it’s Greek and it’s a long one at that. We went
through the standard format of the appointment; how have I been, any
differences I have seen, how I am coping day to day etc. It starts off fairly positive
so I think well maybe all my negative thoughts are just my mind worrying
unnecessarily. We even manage a few laughs here and there, one finally being
after 18 months of being on warfarin (which is also known probably more
commonly as rat poison) they have agreed to change it for the new drug,
rivaroxaban. I “jumped” for joy to know that I wasn’t going to have to go for
my weekly blood tests anymore, I could eat as much green vegetables as I like,
and I could finally have a few alcoholic drinks without worrying that the
anticoagulant ladies wouldn’t tell me off if I slightly overdid it on my 2
units allowance of alcohol per day! So the consultation is going well, even my conscience
is willing the consultant to say “we don’t need to see you for the next 12
months”.
Wishful
thinking on my part.
I
should have known it was too good to be true. The consultant then started to go
down the path of the future, which is something they haven’t been keen to discuss
with me up till now. Whenever I have asked previously it’s been very vague and I
have been almost fobbed off with “we don’t know what the future holds”. I’ve
always pushed them for more of a definitive answer however I’ve always ended up
with fruitless results. This time however I didn’t need to, he wanted to remind
me I have a progressive disease and remind me again “one day the drugs will
stop working”. Then it came…….”firstly we want to see you at the end of this
year to change your medication”. WHAT?? WHY?? SO I AM GETTING WORSE?? My
conscience is in her element. The consultant picks up my thoughts and carries
on to say, “Well Gemma whilst you are relatively stable, you have a progressive
disease so we need to stay well ahead as we can so we will look to put you on
iloprost”. I was first put on this drug when I got diagnosed and it can be
administered in two ways; either I will have to sit and inhale it three times a
day for 30 minutes each time or I’ll have it intravenously injected straight
into my chest which will be there 24/7. Both mean a lot of change to my current
medication regime, but I am hoping for the inhaling one rather than constantly
having a needle inserted in my chest.
Ok
so new medication regime might not mean a lot to anyone who doesn’t take
powerful medication but the side effects of these powerful drugs can be
horrendous. When I was put on sildenafil (the more commonly associated
name….Viagra, yes I am on Viagra 3 times a day, you can start the innuendos
now!!) my face went a deep shade of purple and within 15 minutes of taking the drug
I went blind for about half an hour before passing out, which I think was the
most scary situation I have ever been in. In addition I got and still have to
this day the most horrendous headaches. It took my body months to get used to
these drugs and the side effects they all bring. So now they want to change all
that. Not ideal when I work full time in a stressful job that demands long
hours. Being a control freak that I am I absolutely detest when I’m not in
control and to know that come the end of the year I will be admitted back into
hospital and given a new set of drugs to add into my current regime I have to
say fills me with dread.
Secondly
and definitely even scarier than changing my medication we discussed a topic that
whilst I always knew was lurking somewhere in the dark in my future, I have to
admit I never thought we would really talk about, or at least not now, less
than 2 years after being diagnosed. The one phrase that I can honestly say I
wasn’t anywhere near ready to hear was “I am going to refer you to Wythenshawe
and ask that they assess you for a lung transplant”. (Silence for a good few minutes
at this point on my part, even the conscience was silent). I just kept staring
at him, willing myself not to cry, as I didn’t want to ruin the good fun
“party” we had had moments before and all I could think was that I must have
misheard him say that as surely this cannot be happening?? I mean I thought he
had said I was relatively stable?? If someone is stable how can they be even
discussing transplant??? Clearly the consultant read my signals and interpreted
that as Gemma wants to know exactly what that will involve. So over the course
of the next few moments, I had an out of body experience where I was floating
above us all as he described the next steps.
Both
me and Andy walked out of the room not sure whether to be pleased that I was
relatively stable or whether to be upset that actually my disease is starting
to get worse and therefore we were needing to take the next steps.
It
hit me………24 hours later.
I
had been out for a client lunch being the life and soul of the group as usual
(well we’ve heard other peoples comments before with a far less positive spin
on it so I think its about time I injected some positivity into this blog). The
lunch was lovely, I say my good byes to them and off I head back to Manchester.
I can’t really remember what set me off, it may well have been the depressing
sounds of Adele (don’t get me wrong I do love Adele’s voice, she can actually
sing compared to the previous bloke) but
you do have to be in a certain mind-set to listen to her and clearly I was an
emotional wreck that day. I think I cried the entire hour home down the M62. I
remember driving up to some traffic lights taking my sunglasses off and turning
my head to the side and this guy in a white van clearly saw me sobbing my heart
out, he wound his window down to say “are you alright love” to which I tried to
nod back and gave a slight smile to appreciate his kindness. I think I cried
pretty much all weekend. Lots of different thoughts, of which I won’t share
with you, as I appreciate it’s a Sunday night and most people have the Sunday
night blues at the best of times, but the moral of the story was me feeling
quite sorry for myself.
This
week just gone, was probably one of my lowest. Whilst I am still tired and my
breathlessness is still there in the wings, I have rested as much as I can so
that I can try and fight this journey that little bit more. After all, I think
we are only just at the beginning of a very long and unknown journey. And as
they say what doesn’t kill you makes you stronger!
Gem
xx
