Life is a rollercoaster

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.

6^th 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