Saturday, 8 May 2021

PH vs London 10K

Dear Readers,

On 10th April, the PHA UK gave the opportunity for 10 supporters to Walk or Run 10km to support people with PH with a FREE place in the virtual Vitality London 10,000. The supporters have to complete the distance a route of their choice, either all at once or over a period of 7 days between 29th May - 6th June. Whilst doing this, they must try and raise as much funds for the PHA UK as possible. I believe this is a very daunting task for many, even without PH, but I was very pleased to hear that two of my friends (both with PH) have been given a place in this event. I'm so proud of them and I know they will be fantastic!!

I'm sure after reading their stories you will understand why raising money for the PHA UK is so important to each competitor. We know that times are very difficult right now, but please help these two amazing people to raise as much money as possible for our wonderful charity the PHA UK. We would very much appreciate your support and donations. To donate to either fundraiser, please click on their photo.


Jayne is super proud to announce that her son, Jack, will be running the 10km to raise funds and awareness for the PHA UK on Saturday 12 June 2021. Jayne will be joining Jack in her wheelchair at the beginning and at the end of the race, but as Jack will be running so fast, Jayne and her family with be supporting from the side. Jack isn't going to make it easy for himself, he’ll be carrying a bag weighing 4.5 stone, the equivalent of a small child! We wish you all the best, Jack!!                                          

Alex is delighted to announce that she has been chosen to participate in the 10km to raise funds and awareness for the PHA UK. Alex was diagnosed with PH in 2019, any walking task takes a lot of effort and determination for someone with PH, so this will be a huge challenge for her. This is going to take all the strength and energy she has and she is hoping to do it one day, with a stop or two along the way. We wish you all the best, Alex!!

Here are their Pulmonary Hypertension stories

Alex's PH Story
"Before I was diagnosed, I couldn't walk up the stairs without getting breathless. This is what started off the whole diagnosis journey. I would get to the top of the stairs and have to catch my breath. I've never been the most fit person, but I could walk up the stairs!!! So I went to the doctors because I knew something wasn't right. They said they thought I had post infection asthma and gave me a pump. I went back 2 months later as there was no change and I was sure it was NOT asthma. 
Between my first symptoms in December and getting to the Royal  Papworth for the definitive test in April, I had got so much worse!!!
I couldn't walk up more than about 5 stairs without stopping. I couldn't walk on the flat to my car on the drive without having to stop. My ankles and belly were horribly swollen. 
It turns out that my heart was really, really struggling. My consultant couldn't believe I had been working full time and carrying on as "normal". My heart wasn't pumping much blood around my body at all!!! It was very scary actually hearing how sick I was! 
Luckily, I was diagnosed quickly and I was put straight on the line at diagnosis, immediately after my first Right Heart Catheter in April 2019. I am delighted that the medication I was put on has allowed me to live my life normally. Not everyone is this lucky. The medications give awful side effects and I have my up and down days, but I keep powering through. I am incredibly fortunate to be under the wonderful care of the team at Royal Papworth, with their support, I have got to where I am today.
Now I can walk and usually walk a good distance on the flat. I can run up my stairs. I lost 10kg of water retention! Hills still floor me (especially if I'm chatting at the same time) and lots of steps or stairs are my nemesis. But day to day, I function normally. 
I am raising money for PHA UK so that in the future, it doesn't go misdiagnosed and people can start medication quickly. It can take years to be diagnosed and by then it is too late for intervention. This leads to a very scary statistic of the life expectancy being 5-7 years!! My hope is that, in the future, a diagnosis of PH is not life changing or scary...maybe there will even be a cure!! 
This event can be done over the week as a walk or a run. I will be walking it (obviously), but I will be trying to walk it all in one go, not over a number of days. I know walking 10k doesn't seem like a big deal to most people. To me it is!! This time 2 years ago, I never imagined I would be able to take on a challenge like this!" 

Jayne's PH Story
"Seven years ago today I had a normal outpatient appointment at Medway for an echocardiogram. I’d gone along on my own as Liam was at work. I’d been under Medway Respiratory for almost 2 years and they’d failed to find anything wrong, even though I was blue a lot of the time!
The operator who did the echo called her supervisor, her supervisor paged the consultant. I was sat there thinking, hmmmm this is a bit out of the ordinary. The consultant came along, did another echo and said he was 99% certain it was the rare pulmonary arterial hypertension and that I also had a large hole in the heart - it was that large even I could see it clearly on the scan with the blood pumping through.
The consultant said it was pure luck that he’d trained with a PH consultant from Hammersmith and that was how he’d spotted it. He asked if there was anyone they should call, at that point I realised it was pretty serious, although I thanked him for finding it as I was sure I was going around the bend! I managed to get hold of Liam and when he arrived they did blood gases and some more tests. The blood gas test is not nice, they take arterial gases from the wrist and it’s bloody painful. The blood sprayed all over the bed and right up the wall.
They admitted me straight from clinic and told me I’d stay there until I could get a referral to any of the London PH centres. Luckily, a week or so afterwards I got an urgent transfer to the wonderful team at the Royal Free. Initially, I had many appointments, we were going to London every week, they found I also had a very rare condition, PAPVD, that would complicate the pulmonary hypertension treatment.
Liam took annual leave and then his employer, Arriva, sacked him for taking time off. We took them to appeal and he was reinstated but he resigned the same day to become my full time Carer. Jack and Lucy were 11 and 9.
In the beginning, I was treated with tablets alone, adding oxygen in a couple of years later and then eventually adding IV meds when it became clear that it would be unlikely that the triple transplant (heart and double lung) I need would ever materialise.
Fast forward seven years and I’ve been on IV meds for almost 4 years. My pro-BNP (the protein that dictates your “chance” of having a heart attack) is almost that of a normal person.
The IV meds are what they call “dirty meds”, the side effects are nasty. I live on a diet of loperamide (diarrhoea) tablets, anti-sickness and Tramadol, in addition to my usual PH meds. On a bad day I take 45 tablets, in addition to the IV and oxygen.
I have a bright blue line that runs drugs straight into my heart, if this stops for more than 20 minutes then I’m buggered. It’s not very attractive, this bright blue line, hanging out of my left boob. It’s attached to a longer line and a pump that sits in a not very trendy bag around my waist. It’s not attractive in the slightest. Frequently the pain in my joints (another side effect) is so much that I fantasise about lying in a swimming pool, or jumping into a hot tub, but I can’t. They’re both a big no. The pain in my jaw when I eat anything is enough to make you cry, but it’s over in seconds. And, oh my days, the leg pain that keeps you awake at night
My drug bill alone in this past 7 years is working its way to just under half a million quid, and that’s not counting the procedures, tests, consultant appointments and anything else.
I’ve not worked since the day I was given the news. If you’re really poorly you can get your pension early (yay, there’s a bonus), and I can’t fly (even if the airlines were running).
I’m classed as one of the extremely vulnerable, as are all my PH friends (“phriends”), and we’re shielding as a family - the world literally passing by my window.
I’ve learned who my real friends are, many supposed-friends buggered off and that’s fine, I’d rather have a very small, select group of people I can trust.
BUT - I’M ALIVE. PH has a prognosis of 2 years if it’s not medicated, and here I am, 7 years later, still going strong!! It’s not all bad, I have some days where I almost feel normal! Days when I feel as if I’m living, not merely existing! Days when I can be the bolshy, bossy cow I always was! And I’ve made some amazing phriends. It’s not all bad, it’s just all about adjusting to a new normal.
I haven’t written this as a “poor me, woe is me” account. I’ve written it as a positive story, I’m here solely because of the care of the amazing team at the Royal Free and the fabulous NHS!"

I'm sure you will join me in wishing Jack & Alex all the best for this incredible challenge and I will update you when it is all over! A huge Good Luck to everyone who is participating in the Virtual Vitality London 10k, 2021!!

Thank you for reading!

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