The Flying Doctors

Dear world,

Hello…….I’m still alive! Sorry I’ve not posted a blog for an eternity. Not sure where the time has gone, it’s been a busy 2018 so far. My mum and dad came down under to visit for 2 months over Christmas where we had a big family Cousins/Spencer Christmas at our house in Warrnambool, hosting 12 adults, 3 kids and 1 baby. It was great for both families to meet and as I predicted all got on amazingly well! 

Shortly after, my friend Carly flew in for a few weeks, where we explored a number of Melbourne’s finest rooftop establishments and ate and drank our body weight in good food and copious amount of wine and cocktails! 

I then had a small break of visitors before my sister, brother-in-law and niece and nephew made the arduous 34 hour journey. It was fantastic having them all over and even though I knew my time with them was limited, fun was definitely on the agenda!

In April 2018 I started my “proper” job since arriving in Australia. I have had a few comical job titles in the past e.g. ‘Avon lady’ and ‘Leakage Coordinator’ but my current title definitely wins the award for the longest: ‘Project Lead – Preventing and Managing Occupational Violence and Aggression’ or OVA for short! In essence I am trying to ensure the local hospital in Warrnambool remains safe for all workers. It’s definitely a challenge as I’ve not worked in the health sector before and not implemented an organisation wide project, but one I am definitely relishing.

We had a few ‘quiet’ months before we flew off to Greece for Juzzy’s brother’s wedding in Patras, before having a family holiday in Kefalonia where my mum and Grandma joined us for a few days. It was great seeing them and fab that my 84 year old Grandma could come along for the adventure. She thoroughly enjoyed herself and loved meeting all of Juzzy’s family. 

Juz and I then circumnavigated the Southern Peloponnese, driving 2,500km in total. It was an adventure and great to see another part of Greece, compared to my early 20s when it was all about the excitement of Club 18-30 in Malia and Faliraki and what trouble we could get into! My, how I am growing up!

Since early 2016 I’ve been really fortunate that I’ve been stable with my PH. I’ve had check-ups every 6 months and the results along the way have indicated all the pressures are the same and to keep doing what I am doing as it is working. I must admit though, I’ve been a bit lax of late on the fitness side. Too much entertaining, drinking and eating has got in the way, plus now its winter the dark nights make it hard to go out for a run etc. I know, excuses, excuses! But I definitely have the motivation to get back into the fitness so that’s the first hurdle.

One area I have struggled whilst having PH is trying not to over react every time I don’t feel myself, and instantly assume my PH is getting worse and I have a matter of days to live. God I sound so dramatic! Granted I am better than I used to be, but it’s still an issue for me. I started to feel unwell about a week or so after returning from Greece. Trying to keep an open mind and not instantly jump onto the PH bandwagon I tried to explore a multitude of options with a number of healthcare professionals from musculoskeletal, infection, stress, autoimmune through to blood clot. During this time all the results came back negative, which in a way was good to rule things out but also incredibly frustrating. I genuinely started to question if the pain was all made up in my head. After a number of ‘attacks’ during the last 6 weeks, last Sunday evening whilst preparing dinner another ‘attack’ hit me. I know I am a bit of a perfectionist in the kitchen and take pride in my cooking, but I didn’t realise my cheese grating skills would create the drama that enfolded!

I can only describe the pain as “I’m having a heart attack”. Dramatic I know, aged 34! I couldn’t breathe. I had to clutch my chest to try and relieve it in some way. The pain lasted an hour and a half before being given medication at the Emergency Department which instantly relieved it. As usual for me, all tests showed nothing. I wasn’t having a heart attack. I didn’t have a blood clot. My heart wasn’t enlarged. The CT scan showed nothing. The chest x-ray was clear.

Then finally, some activity showed up on my ECG whilst having an ‘attack’. “Yes” I quietly said to myself, "I’m not a fraud". I finally have proof that there is something going on. After a traumatic 24 hours, where a ‘MET call’ was called for me (which involves about 15 doctors and nurses running into your room at break neck pace) whilst my resting heart rate was pumping at 137 beats per minute and blood pressure was insanely high, I was then transferred to ICU, before it was decided I would be better being transferred to the Alfred hospital, where they have a cardiology department and also where my PH specialists are.

I wasn’t thrilled about facing a 4 hour ambulance ride going backwards (I get motion sickness) but I was pleased that I was going to see the specialists in the hope they could work out what was going on. Next thing I know the paramedics arrive and announce we need to leave now as the plane is ready and waiting for me! Now anyone who has read my previous blogs likely knows I am a terrible flyer and get really anxious when flying! Probably not perfect timing to throw flying into the mix when my resting heart rate at this point on average was 100! Anyway they reassured me that it would be better for me, as less time to get to Melbourne and they could offer me some kind of ‘relaxant’ to get me through the journey.  

As a child I loved watching the Flying Doctors. I think that is where my first love for Australia came from. So when we arrived at the “airport” and I saw the tiniest plane I'd ever seen my heart skipped a beat! At first I felt like I was on an episode of one of my childhood favourites! Then quite quickly my positivity turned to “oh great the turbulence”. We were lucky, it was a relatively clear day, blue skies, and whilst there was some wind it was only during take-off and landing when we experienced the turbulence. I won’t complain though I am entirely grateful that I was able to use the resource.

I’ve always been a difficult patient to diagnose. The tests nearly all of the time always appear negative. It was the same when they were trying to diagnose PH. It took multiple tests and a week in hospital for them to give me a tentative diagnosis. This episode was no different. The first few days at the Alfred they seemed very focused on checking if I was having a heart attack after each attack and not exploring other options. I was getting more and more disillusioned. In the end Juz and I ended up “having a chat” to the doctors to try and re-focus them to look at what other options there were. It worked, less than 12 hours from having “the chat” I was re-tested and finally the Echo showed fluid around my heart. Along with the movements on the ECG they then at last confirmed I had Pericarditis. It’s not something I had heard of before – basically there is inflammation around the heart sac. They don’t know why I got it, likely I could have had a viral infection and instead of it translating into a cold or flu it attacked my heart. Incredibly painful  but I am just relieved, finally after 6 weeks to have a diagnosis and start medication.

I’m now home. Still in a fair bit of pain and the side effects of the medication aren’t the nicest but hopefully in the next few days I should start to turn a corner. I also learnt from this latest admission I am allergic to even more different medications. I went in allergic to 3, I came out and now allergic to 9! Some feat!!

As always thanks for reading,

Gemsy    

xxx

In my little bubble

Me fascinated with bubbles at the age of 18 months old.

Dear world,

How are we nearly at the end of 2017? They do say once you reach 30 life just flashes past you, and this year is no exception. I’ve done a lot so far in 2017, probably one of my most productive in recent years. I’ve moved countries, where I am now settled in a friendly coastal town. Started a new job, working for the local hospital, different to my old career but I am certainly being challenged in different ways and learning new skills which is all a bonus, Plus it’s really nice to have 9-5pm hours, and actually be able to switch off from work in the evenings, with no work phone making me contactable 24/7. It’s even nice arriving into hospital and knowing it’s not for another scan, catherisation or consultation!

Juzzy and I have settled into our new party pad, so anyone who fancies a trip down under you are very welcome to have the west wing! I have also really shifted up a gear with my fitness. Back in the UK I had a PT which was great and really motivated to get me working out, but since being here in Oz I have wanted to get out more, although when the 40 degree days arrive in the next few months, (which I’ve been told will definitely happen this summer unlike last year) I’m sure I’ll be wishing I was inside in a lovely air conditioned gym!

I’ve really taken to running, something I never thought I would hear myself ever say. I remember the one time whilst I was at uni I went to the gym with two of my guy friends. Trying to show off as I occasionally do, I started to run on the treadmill, and I’d say about 30 seconds in I genuinely thought I was going to have a heart attack and pass out. My friend Dan still reminds me of the episode to this day with great amusement on his part. Needless to say I didn’t venture to the gym or treadmill again whilst at uni. So this new Gemma is quite a turn up for the books. Granted I’m not going to smash any world records, (well maybe for being the slowest), but instead of trying to be the hare, I’ve decided being the tortoise is just right for me. Although I’m sure my disgruntled niece Marissa will disagree who shouted “go faster Auntie Gem, you’re too slow” when I was out for a morning jog around London back in the summer! I’m currently stagnating at week 7 of 9 of the Couch to 5k podcast. The podcast has challenged me at lots of different points, the toughest being to run for 25 minutes straight with no breaks but being extremely determined I managed it! Currently my PB distance stands at 4.2km. So hopefully with a few more consistent runs I can get to the elusive 5k target! So watch out for me at the next Olympics!

I started my new drug trial back in May. I was extremely anxious about the whole thing as 3 years ago Royal Hallamshire Hospital tried a similar thing but it didn’t work. My anxiety levels have somewhat eased though and I’m pleased to report I haven’t suffered with any new symptoms that I know of and my health seems just as good as before. TOUCH WOOD. I head to the Alfred Hospital in Melbourne over the next few weeks for various tests. The first one is tomorrow for the right heart catherisation, this will be my 5^th time on the operating table so at least I know what to expect, although I still find it all very surreal being able to see the wire going into my heart on the x-ray. Fingers crossed the results show I am stable and that my arterial pressures haven’t increased. If all is stable then we can move onto phase 2 of the trial which is to reduce the dosage of one of my drugs.

Coming up to nearly 4 years ago since this new chapter of my life started, this year has been the 1st year I have on a regular basis forgotten that I have PH. Before, PH ruled my life, whereas now I rule my life. It’s such a liberating feeling. I finally feel like I can do anything. I’m no longer in my eyes the girl with PH, I’m just Gemma. Before I was scared to look into the future as I was convinced I wouldn’t be there. Now I just focus on the mentality that I will fight until I can no longer fight and if that is in 5 years or 50 then so be it. 

I have a very happy life, living in my little bubble by the ocean. I miss all my friends and my family especially my sister, niece and nephew but being here in Australia just feels like where I am meant to be. Thank god for FaceTime! I have lots to look forward to over the next 6 months. My mum and dad are coming over for 2 months at Christmas where we will be joined by the whole of Juzzy’s family. Then I have one of my friends coming over early next year so it will be good to show her the sights before Leah, Alex and the children come over at Easter.     

With my family. 

   

Will keep you posted on my test results over the next few weeks. Hopefully it all continues to be positive.

Lots of love,

Gemsy

xx

Save our NHS

Dear world,

Last time we spoke, I mentioned about the possibility of looking to increase the dosage of one of my medications with the hope that in time I might be one of the very few people who respond well to high dosages of calcium channel blockers and in turn potentially reduce my other medications. I am now a week on from trialing the new medication. Not to jinx it, but so far all seems relatively normal. I’ve been advised what the possible side effects could be so I know what to look out for, but it is very hard not to read into every single thing your body does that doesn’t feel “normal”. I am trying not to be a hypochondriac, which is hard for me as I live with anxiety, so my way of dealing with it is by keeping a diary of my symptoms and then if I can see a pattern that doesn’t seem normal then I can relay my fears to my PH nurse. But here’s hoping I don’t have to do that! If all goes well, I will be on this new dosage for the next 6 months and then I’ll have a repeat right heart catherisation to check the pressures. If the pressures are still stable then we will look to decrease one of the other medications I’m on. So it’s all a bit of a waiting game for now, but hopefully I can continue on as well as I have been doing.

As you can see from this blogs title, the main theme is about the NHS. For the non-British citizens reading this, here’s the science bit: The National Health Service is a publicly funded national healthcare system in the UK. The organisation, funded primarily by taxation, provides free healthcare to all legal residents of the U.K. Medications are subsidised as well and prescriptions may be free when situations warrant.  

I have been incredibly fortunate to grow up having free access to medical services, and never having to worry if I was feeling unwell that I couldn’t access a doctor for free. However had I been born in another country, I wouldn’t necessarily have had that luxury. Instead, I would have ended up with expensive costly appointments, especially with having a chronic disease. I dread to think how much it would have cost me when I saw the cardiologist who diagnosed me with PH or how much it costs every time I have the right heart catherisation operation for them to check my pressures in my pulmonary artery, or the countless MRI and echo scans I’ve had and will continue to have. It would easily go into the tens of thousands if not hundreds of thousands. How can someone pay that? I can’t begin to imagine that on top of being told 3 years ago that I had a chronic disease, that I also would have to pay for all the tests, medicine, care etc. to keep me alive. The stress would have easily have made my condition so much worse.

From being born at Barnsley hospital; needing arm surgery aged 8; continuing to be accident prone throughout my teens breaking many bones in my body; being strapped to a tilt test bed aged 18 after a series of fainting episodes; getting quite intoxicated one summer party at university and ending up needing a saline drip to rehydrate me (not one of my finest moments, sorry mum) through to being diagnosed with PH; I have always relied upon the NHS without question. I have come across endless people who make the NHS tick, from porter staff who have happily chatted to me about random topics making me forget which theatre room they are wheeling me off to this time, through to blood takers, specialist nurses, doctors, consultants, professors and paramedics. Each have ensured I am well cared for and looked after; some have consoled me when the future looked particularly bleak; others have saved me from death; and others have given me hope. I am eternally grateful for each and every one of them, as without them I don’t think my future would look anything like it does now.

Overall, my experience with the NHS has been positive. But like everything it’s not 100% perfect. No doubt you will have seen/read on a regular basis by the media there are massive issues with the NHS. In my head I underestimated how many issues the NHS had, I’m not always one to believe everything I read in the paper, but from talking with a number of medical professions I have realised the issue is real which in itself is extremely frightening but what is worse is the issues are MASSIVE. From speaking with a dozen or so doctors in the last few months, most are on the verge of a breakdown due to the crazy hours they work, the cuts they are seeing both in staffing and care which impacts on their work, and others are looking to relocate elsewhere in the world, as they can’t see a future working in the NHS. They feel demoralized, undervalued, especially as staff have taken pay cuts over the past 5 years (pay increases capped at 1%, less than the rate of inflation), and the over-riding feeling I get is these are genuine people who really care about what they do, and only want the best for their patients, but they are running on empty and have very little more they can give. As a patient of the NHS this concerns me greatly. Both for me now and in the future.

There are issues: long waiting times to see doctors; departments are short staffed; staff to patient ratios: referral appointments to see a counsellor (I waited 6 months to see one when first diagnosed with PH); not enough beds (I got woken up in the middle of the night by a nurse who wanted my bed and I ended up being plonked on the nose and throat ward, with a lung condition). Unfortunately this is not uncommon. Through research of my own and speaking with doctors generally I heard one story: “We had to cancel 4 operations today because our ward didn’t have enough beds for them. The ward was full of boarders from other specialties who couldn’t go to their wards, because people were in those beds who couldn’t be discharged because there were no carers or money to pay for care at home”.

What it appears is the current government have been contracting out major parts of the NHS to private companies who charge ridiculous amounts of money for the service, which comes out of the healthcare budget. The current government have been in power since 2010 and over the last 7 years they have reduced the budgets each year, making it at the point where if it continues the NHS will almost certainly end up completely on its knees and will no longer be able to function anymore. It is no coincidence that Jeremy Hunt the Health Secretary since 2012 co-wrote a book, “How to Dismantle the NHS in 10 Easy Steps”. If this pattern continues the NHS will be no more and we will end up under an American structure which is funded by private insurance. Who wants this?!

As I’m sure most of you are aware from the various election campaigns and no doubt endless TV programmes there is a general election coming up next week. I have never really been interested in politics, always stemming away from the whole political scene. Granted I have voted on most occasions since turning 18 and I have always voted conservatives. Nothing really more than I grew up in an environment where the majority appeared to vote this way and never really having taken an interest before I just ticked the box that looked familiar. I now look back and realise how naïve I was.

Now I have a bee in my bonnet about this whole NHS subject – so people beware! I don’t want to sit around and let the NHS crumble and be replaced with something resembling the personally crippling American Insurance scheme, paying £000’s for insurance!

To live in a democratic society, you get to have your own vote and you decide who you want to have as your leader. All I ask is that you ask yourselves these questions: Do you use the NHS now? Does your family or friends rely on the NHS for their own health? Will you require the NHS in the future? If you answer yes to any of these, then remember the NHS when you cross the box come 8^th June.  This maybe the last time we get to save the NHS. In 5 years’ time we may not have that luxury.

Here is a short clip of a doctor who inspired me to write this blog. After watching his short video he made me realise that we have the power to change things, but we don’t have long to make this change, we need to do it now.

https://www.youtube.com/watch?v=ulpWJO7Q2_U

It will be 70 years in 2018 since the NHS started. The NHS is a national treasure and something as a British citizen we should expect to have in another 70 years. Please think carefully about how important the NHS is to you and your family when voting next week.

Can you imagine a UK without the NHS?

#SAVEOURNHS

Gemsy

xxx

It's hard not to listen to the numbers

Dear world,

It’s been a while since I last put pen to paper, ok, finger to keyboard, but I’ve really been struggling for inspiration of what to write next. I’m sure those who know me, know I can wax lyrical when there is not so good news, but when I’m feeling good, apart from saying I’m good and all is well, it’s hard to write a whole blog about that. Talking of good things, I am feeling really good and if I look back over the last year I have done amazingly well. Granted I have my down days where my body demands a duvet day as I have way over done it, but you don’t have to have PH to have those days!

I’ve been fighting off the demons and keeping up with my exercise regime. I’ve even started properly getting into running too. I’ve found a great app on the NHS website, which is a running podcast called Couch to 5k. http://www.nhs.uk/LiveWell/c25k/Pages/couch-to-5k.aspx 

It’s a 9 week running program that’s been designed to get just about anyone from the couch to running 5km or 30 minutes in just 9 weeks. I’m currently on week 2, so no not Paula Radcliffe just yet, but its great inspiration for me to keep going. I’ve never been a runner so I had no clue where to start, well apart from trying to make sure I put one foot in front of the other and go slightly quicker than walking. But I found after 2 minutes I was literally about to keel over and die as I had way over done it and completely out of breathe! But this podcast breaks it down into little consistent running and walking breaks. Totally takes the stress out of thinking when 60 seconds is up and am I meant to run or walk now. It’s a total no brainer. In week 1 I did 60 seconds of running, 90 seconds of brisk walking and so on for 20 minutes. Laura (the running commentator) tells you when to start and stop and along the way gives you a few tricks on posture and breathing etc. It’s genuinely been the best treasure I could find.

As well as this I’ve been going to a cardiac rehab clinic twice a week at the local hospital. I knew I was going to be the youngest there by a good 30 years but the memo hadn’t quite got round to the other people in clinic that day. Their faces were a picture when I arrived in my gym gear all pumped and ready to go. I think they thought I was the new gym instructor. So when I started to follow them and copy what they were doing they were quite baffled and when they heard my accent I think they were even more bemused. It’s been great though, I do an hour twice a week working my way around different gym equipment rating how tired and breathless I am feeling and checking on my heart rate and oxygen levels throughout.

I had an appointment at the end of February to see my new PH doctor. I was a little apprehensive to say the least as I have only ever been seen by the doctors at Sheffield. They have seen me at my worst saving me from death (not to be dramatic) and got me to a stable point, so for me they are pretty important people who I have a lot of trust in. In a way I felt like I was cheating on them by going to see the new doctor! Daft isn’t it!! Anyway I looked at it that it was only a consultation and what was the worst that could happen.

When we met her I could tell she had a good grasp of my medical history with her tone and what she was saying, so she eased my initial worries. Then she started to focus on the fact that I was a nitric oxide responder when I was first diagnosed. We knew from my diagnosis 3 years ago I was a responder which is a very positive thing to have when you have PH. 3 years ago Sheffield tried me on high dosages of calcium channel blockers which are meant to help a very very small amount of people with IPAH if you are a responder. If successful to the drugs it means my prognosis could be a lot better; hopefully live longer than I will on current medication, reduces the chance of rejection of the drugs unlike the ones I am currently on and the drugs are a lot less damaging to my vital organs than the current ones I am taking, therefore meaning I can cut out the regular trips to the doctors I currently have to. Which I would welcome as who wants to go to hospital regularly?!

At the time 3 years ago, the doctors tried to get me on high dosages of calcium channel blockers but my body didn’t respond the way it should and as I seemed to be declining quickly the doctors wanted to put me on more aggressive medication. This worked and due to being stable the doctors at Sheffield have been keen to keep me on the current regime so I could continue as I have been.

The downside with this medication regime is one day it will stop working. My body will stop responding to the medication and therefore I will go back into decline unless they find other medications to work.  This has always been at the back of my mind, especially the last year thinking I am good now but will I just wake up one day and find the drugs no longer work and that unless there is a cure or new medication then we are looking again at transplant or worse, death. It’s something that keeps my anxiety up there I can tell you!

It turns out that this new doctor’s specialism within PH is people with IPAH who are nitric oxide responders and getting them onto high dosages of calcium channel blockers. Lucky for me I have IPAH and am a nitric oxide responder! So her plan of attack is to try me again on the high dosages of calcium channel blockers.

The odds are 50/50. I have been one of the lucky ones so far by being a nitric oxide responder. To put it in context the statistics are, 1 person in 1 million every year is diagnosed IPAH in the US and Europe. Take the UK for example with a population of 60 million, this means there are 60 people each year diagnosed IPAH. Out of those 60 people, half will be nitric oxide responders. Of which I am one. Out of those 30 people, half again will actually respond to being on high dosages of calcium channel blockers. Of which I am hoping to be! So I need to be one of those 15/60!!

If my body will respond to them this time, the plan is over time to reduce the dosages of my current medication, maybe even taking me off these altogether and keep me on calcium channel blockers. It might be a complete pipe dream that doesn’t work, but it also might. It’s some hope. And I need hope.

I came away from the appointment completely out of sorts to be honest. It didn’t feel real. I wasn’t sure if I was to scream ecstatically from the rooftops that someone might have an answer to get me as close to being cured as humanly possible or whether I should keep it a secret in case by saying it out loud it might stop it from happening. I told family and a few close friends but apart from them I wanted it to be my secret, and suppose let it all sink in. 

I also wanted to wait to share anything as I needed to have it confirmed I was still a responder. As if I wasn’t then it would be a complete non-starter. All hopes would be completely dashed and it would just be carry on as you are for now and wait for your body one day to stop reacting to the medication. But I had it confirmed last week after having the right heart catheterisation that I was still a responder. So we are good to go and start on the high dosages of calcium channel blockers. I next see the doctor at the end of May so hopefully then we can discuss when I will start them.

I did receive some slightly unsettling news whilst having the right heart catheterisation. It showed that my pressures have increased, which does suggest deterioration. As my pressures were last checked December 2015, I’m not sure when in the last 18 month period they have increased so it’s hard not to be able to pinpoint when this happened. I hope when I see the new doctor she can give me comfort that this isn’t the start of the decline. Having PH is such a mental disease. I feel really well and am able to do more cardio exercise than ever before but yet inside the pressures say a different story. Overall though it’s still extremely positive and I have to focus on how I am feeling each day. I am beating the statistics by being alive now and I hope to continue beating more statistics, and being one of those 15 who can be treated by being on the calcium channel blockers.

As always thanks for reading.

Love,

Gemsy xx

Can I dare to dream big?

Possibly one of the most well-known quotes in living history I would say. I ended my last blog saying I dare to dream that I will be one of the lucky ones to see the cure of PH and that I can live a very happy, exciting and long life.  That dream hasn’t changed. I’ve just desperately been trying to make this dream turn into reality. For the most part, I have. I think everyone would agree who has seen or spoken to me in the past 6 months that they have seen an extremely happy, positive girl, more than I have been in a long time, maybe ever. I’ve dared to dream that all the fitness I am doing and how active I am being is keeping my chances of living longer than the doctors have predicted.  The past few months I have felt as strong as ever, if not the fittest I have ever felt. I have even started to dream about entering the Paralympics, as after all having a heart/lung condition, surely ticks that box? I’m not sure what sport I would want to enter yet, but you have to dream big to aspire to the next step.

Looking back at my 32, nearly 33 years of life so far, I realise there is a common theme. I have always had big dreams and the majority of the times I have succeeded in accomplishing them. What I have also learnt is that I don’t tend to do things the most straight forward way, instead taking a massive detour, but undeterred I get there, it just might take me longer than other people.

I always struggled at school academically. I started my infant years at a local Catholic school and as I always finished my work first I was chosen to deliver the milk to the other classes. When I was 7 I moved to a more academic school and went from being one of the cleverest in the class to finding the work much more challenging. I worked hard with few rewards along the way, until aged 16 an English teacher suspected I was dyslexic. After various tests and numerous assessments the suspicion was confirmed. Receiving the news refocused me in a positive way and with a lot of hard and encouragement I was able to be very successful in my exams both at school and university.

As a lot of you know I was due to move to Australia in 2013, having secured a job and sponsorship. It is 3 years ago nearly to the day that I was desperately checking my emails to see if my visa had come through. For some reason and I still don’t know why, the visa was massively delayed and what should have taken 3 weeks took nearly 4 months to come through. It was during this time when I fell ill and I was told my dream of Australia wasn’t meant to be. It may sound silly but I went through a grief cycle when I was told Australia was not an option anymore. Not only was I dealing with being told I had PH but also being told the life I had dreamed about and was just about to start was no longer a reality, I found this really hard to accept. It took me quite a while to get over, but I did and I accepted that it was unlikely I would ever make it to Australia again. During the last 2 and bit years I focused on other dreams, mainly trying to live each day and focus on the here and now. So when earlier this year the opportunity arose for me to go to Australia for a few months, as you can imagine I jumped at the chance.

Living with a condition like PH, it’s tough. At the beginning you’re not really sure whether you can dream, as the future seems to be tainted. When you’re told your life will be significantly cut short by a disease that no one really understands or has any know how of how to halt it, it’s hard to know what to do. It was only really earlier this year when my mental mind-set changed that my health started to react positively. During the last 6 months I have even looked to the future and actually stopped worrying about how long I have to live and focused on my life pre PH, and I believe this has been down to my new mental attitude. Apart from the regular reminder to take my tablets every few hours I almost forget now I have ph.

My latest dream has been working out how I can get out to Australia longer term. I’ve been trying every which way to try and make this happen, speaking with immigration lawyers, various medical professionals, and at the moment it has been proving quite challenging. But if having PH has taught me anything, it is to dream big, expect the unexpected, have a little bit of hope and if it’s meant to be it will all work out. Typical for me I had to fall in love with an Aussie and make life that bit harder, but then if life was straight forward wouldn’t it be boring!  

It’s been a frustrating week with a few tears, and a few “why me?” and “when will I get a break?” but walking back from work to home this evening in the rain (which I may add is a 3.3 mile walk) I have come to the realisation that it will happen, I just need to give it time. Plus I have lots to be grateful for as I am due to head out on a trip to Australia and Bali in November.  

Quite a few people in my situation I know have made bucket lists. As usual being me I like to name things differently so I have put together a dream list. Some achievable, some maybe a tad unrealistic but it’s good to have goals. Hopefully I will start to put many of these into action over the next few months/years. So here I will start my list of top 10 things I dream of achieving. I’m sure over time I will add more, as half the fun is to keep dreaming.

• Raise money for PHA charity, doing some kind of fitness competition. Not sure what this will look like yet but if anyone has any thoughts I will happily listen
• Enter MasterChef
• Travel as much as I can all round the world
• Smash my current shuttle walking test when next at Sheffield, beating my current record of 690m
• Find a sport I can compete in the Paralympics (well I have to dream big!!!)
• Open a deli/café
• Live in Australia
• Adopt children
• Be able to run 5km (for anyone who knows me, knows this would be an absolute miracle to do, but keen to give it a go)
• Live long enough to be cured of PH

As usual, thanks for reading.

Lots of Love,

Gem xx             

You are your own maker

Dear world,

Last week I was notified by Facebook that it was my one year anniversary for the writing of my first blog. I’m still in shock at how time has flown and what a journey of a year I’ve had. I remember a wise owl telling me when I reached 30 that time would just flash before me, they weren’t wrong!

This time last year I was really starting to decline quite rapidly. My hospital admissions were becoming ever so frequent and for the first time since diagnosis I was starting to take considerable time off work. I was exhausted all the time from waking up to going back to bed, literally no energy whatsoever. I spent a ridiculous amount of time in bed and I was using my wheelchair for normal day to day living. I genuinely thought this was it, the start of the decline. It was August last year when the doctors braced the subject of going down the double lung transplant route. We were starting to think about trying me on new medication including the dreaded IV medicine which would have meant having a needle 24/7 constantly into my heart to keep it working. Needless to say I was not in a good way. So to look at me now and how I am feeling is nothing short of a miracle.

As some of you will have seen on my FB post back in June, I received the best news from my doctors since being diagnosed. My heart size has reduced significantly, therefore meaning the heart isn’t having to pump as hard as before and also no longer classed as being in heart failure mode; my pressures in my pulmonary artery had reduced from a staggering 69 to an almost “normal” 29!!! (Just for context, a “normal” persons’ pressure on average is anything from 6 to 12). I managed to walk 690m on an incremental shuttle walking test (the year before I managed 250m); I am now stage 1 (best level for someone with PH) at diagnosis was classed as stage 4 (worst level); going from every 3 month review to yearly and best news of all, they are taking me off the assessment programme for double lung transplant. Yay!! No words will describe how I was feeling when they gave me my results, but all I can say is then and now 6 weeks on I feel extremely lucky that for the time being I am being given what I feel is a second chance at life.

I used the word miracle in my earlier paragraph. The definition of a miracle is “an extraordinary and welcome event that is not explicable by natural or scientific laws and is therefore attributed to a divine agency”. I’m not religious enough to think there is a being that is looking over me, although through the dark times I have felt that fate has taken me on various paths to get me here today. I am putting my “miracle” down to a number of different things.

Firstly, the medication. If it weren’t for the medication I wouldn’t be here today. That is a proven fact with PH that without treatment it is fatal. I just think my body has taken quite a while to adjust to the medication regime, as whilst it is only oral tablets they are still very invasive and dangerous tablets to take. One of my tablets can cause my liver to become damaged therefore I have regular blood tests to ensure that my liver isn’t in too much danger. In my first year of diagnosis I was taking 20 tablets a day, of which 5 of them were PH related. The other 15 were to try and reduce the side effects of these medications! It’s worrying that taking one tablet can affect other organs and therefore has a knock on effect; you then have to combat it. It’s a balancing and scientific act! In the last 3 months I have been able to reduce the amount of tablets I take to 10. The 5 are still the same for PH but I have managed to reduce the side effects by 66%! Pretty impressive I must say.

Secondly I am putting my “miracle” down to the fitness that I have been doing. Since coming back from Australia I have really been working hard most days on completing nearly an hour of fitness a day. It’s hard going and I feel absolutely wiped out after it but I just feel so much healthier. I rarely get chest pain these days and my increased cardio output means I can do so much more than I did before. My aim for when I next go to the doctors is to improve on my 690m walk. The reason why I had to stop last time wasn’t because I was too breathless or I got chest pain. It was because my legs just went dead. They became really heavy like lead. The reason for that was there wasn’t enough oxygenated blood being pumped around my body quickly enough. So my focus is to over time increase the amount of cardio I can do by increasing small amounts of cardio each week. Hopefully then I will be able to smash my 690m walk test.

Finally and I feel the strongest reason as to why I have managed to turn things around is my mental health. A lot of my friends and family said throughout 2014 and 2015 how positive I was. I thought I was too. I thought if you said you are positive enough times to yourself and not to let PH defy you that it would happen. I don’t think I was naïve to think this, I just think it was my coping mechanism at the time. So what changed? Hindsight is a wonderful thing as you can look back at the past and see what was blatantly staring you in the face, but at the time you couldn’t see it all. Looking back I didn’t realise how unhappy I had been. Obviously I had good reason to be, as living with PH is challenging, but it was the other areas of my life that I was not happy with. I used to really enjoy work and I felt I was good at it, but since returning to work after diagnosis I had changed, I realised I wasn’t as cut throat or aggressive as I needed to be in the world of recruitment.

I have also come to the realisation that I need to surround myself with people who provide me with a positive mind-set, as in the past I have found that some people can have a negative influence on my outlook.  I’m sure the best of intentions were there, however when someone regularly stops you doing “normal” things as “you shouldn’t overdo it” you then start to believe you can’t do things and you become very reliant on that person to do everything for you. It all became too much. When I made it to Australia I felt like I had been given my old wings back, and I could be the independent, happy person I used to be. It was at this point I realised situations had stopped my health from improving, not the disease itself. Once I removed myself from the world of negativity that I had been living with for the past two years, I began to see a massive improvement with my health and just general well-being. I’m sure Juzzy will take full credit for this! But on a serious note my first blog was all about fate and me falling ill at the time meant I couldn’t go to Australia. Now I have made it to Australia and hopefully as long as my health permits it I can enjoy many more trips to Australia and travel more around the world. I strongly believe everything happens for a reason and this year proves that. I wasn’t meant to go to Australia in 2013, it was all meant to be now. I am so excited for my future ahead and I dare to dream that I will be one of the lucky ones to see the cure for PH and that I can live a very happy, exciting and long life.

Love,

Gem xx

I’m not superwoman…….but I’m going to give it a damn good try

Dear world,

In the last 2 years since diagnosis I have been living a life with caution, worry, resentment, anger, depression…I could go on, but I think you get the picture. So when you add in a break up to the mix you wouldn’t be surprised if I was to completely go off the rails and just give in with life. I mean “what’s the point, right”?!

I had 8 weeks of a certain pattern, it involved fitness, drinking and barely eating, at least something good came out of it, after all, I needed a bikini body for Australia! Most people I’m sure go through exactly what I did when their whole life is completely turned on its head, but what surprised me was that my body didn’t give in. For a good few weeks after the break up I waited for my heart and lungs to pack in and just say “right I’ve had enough now”. Not because I wanted to, but added stress is definitely not advisable for someone with PH. Not only did I survive but my body showed me how resilient it could be. I was running on some kind of adrenaline and due to my stubborn nature I just thought I am going to push myself until something makes me stop. I got ill a few times during that time, not PH ill, just generally run down ill. I was really worried that once I got off the fastest speed of the treadmill when I arrived in Australia that my body was going to go into shut down mode. Apart from one blip, which I will talk about later, I’m delighted to say that I am feeling the best I have in 2 years and if I’m honest probably even before I started to become ill.

When I realised that fitness was to become my saviour I became really obsessed with it. Constantly thinking of when I was going to train; looking forward to actually wanting to train, which for anyone who knows me may find this shocking to read as I was the least fit person in the world. It was during this time I realised how strong I was and how I was able to live so much more than before. I was able to walk so much more, carry and lift so much more and even sometimes totally forget I have PH, which is something I haven’t done in 2 years.

The last few months since leaving the UK I have really surprised myself with what I have been able to achieve. Not only did I manage the 14 hour plane ride from Dubai to Melbourne, which normally would have seen me bedridden for days after, but Katie and I managed a night out 24 hours after arriving, we then travelled to the other side of Victoria 2 days later where we had a full on weekend of meeting new people, cooking and hosting for people I didn’t know, barely slept and drinking excessively, (thanks Juzzy). We then went away for a few days where I coped with lots of walks, both hilly and flat and I even managed a 4 mile walk in flip flops which on the return trip was mainly on an incline. Juzzy and I then went on a 12 day epic road trip around Victoria which saw me climb the Pinnacle Mountain in the Grampians; it was a steep climb of a radius of 4.2km. So worth it though, the views were stunning and I even managed to crawl my way to the edge for about 30 seconds before I felt sick due to the sheer drop down at my feet and needed to run down away from the edge! I barely felt breathless and apart from the odd photo break I really surprised myself at how easy I found it. 

Juzzy and I half way up the Pinnacle Mountain

                                               At the top of the Pinnacle

I spent nearly an entire day at the Pioneer settlement in Swan Hill, North Victoria, which has an interesting history of immigration focusing on all the European settlers coming into Victoria, and I spent all day walking round, soaking it all up. Again something 6 months ago that my feet after about 10 minutes would have stopped me from doing due to the swelling I would have got. I train most days for 30-45 mins at a time and not having a car has meant that I have found my sea legs and am now walking a lot more than before.

Anzac weekend was full on, again late nights, socialising, Juzzy getting us lost walking in Melbourne (I thought men could read maps?!) and then a very early start for the Dawn Service. It was just after the Dawn Service I realised maybe I’m not quite as invincible as I had been thinking I had been lately. I had flashbacks of when I first collapsed at the fish market in London, the intense heat came back, I could barely breathe, the breathlessness was insane, my eyes started to lose vision and I just became a floppy dead weight. I could barely stand up, just leaning on Juzzy as I had no energy whatsoever. How we made it back to the apartment god knows and I realised once I got back into bed how much of a bad way I was in. It was like I was paralysed, I couldn’t move anything, including my little finger. It was a really scary time. I stayed in this position for a good few hours and I can only describe the feeling as being like a frozen chicken that over time started to defrost. Weird analogy I know but in my head it just makes sense. For Juzzy who this is all new to, he remained so calm and was amazing with me. Not a mean feat for a boyfriend with a sick girlfriend who for the 4 weeks before had shown no signs of the disease at all. 

           Juzzy and I at Anzac day, an hour before I nearly collapsed. Shows how quick the                        condition takes hold from normal to not being able to move.

It’s really hard not to let the negative thoughts over take your mind and with this slight set back it did make me think it could be the start of deterioration. But after some long thinking I realised that I was just being over dramatic and in fact I had actually done really well to get this far. I’ve only had one true bad day this year, which is amazing when you take into consideration the amount of turmoil I have gone through. I actually look at my bad day now and am grateful that it happened as it made me come down to Earth with a bit of a bump and made me get back into real life. I would be forgiven for thinking that maybe I had started to cure myself of PH as I was pushing my boundaries so much. But this bad day has made me realise that yes I still have the disease however I’m in a really strong position currently and I need to carry on living my life as best as I can.

I’m sure you will have seen the mammoth amount of photos of me dashing all over Victoria. Luckily I’ve had a really good tour guide and I have seen way more than I intended too and built up a great memory bank. I only have 3 weeks left in my adopted homeland and I intend to carry on enjoying myself, hopefully with no further blips.

Speak to you back in the motherland.

Lots of love,

Gem xx