Thursday, 19 October 2017

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 5th 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,



Thursday, 1 June 2017

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 na├»ve 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 8th 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.
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?

Wednesday, 12 April 2017

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. 
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.


Gemsy xx