Emphasis Magazine Issue 2/2024

ISSUE TWO / 2024

MY BIG DAY with PH

How Alex overcame obstacles to tie the knot

Treatment updates

What happens next with new pulmonary hypertension drug development?

This magazine, for members of the PHA UK, is printed on paper from sustainably managed sources

www.phauk.org

“I’m living my life in colour once again” Seeing palliative care differently Also inside:

Expert advice, research updates, fundraising news, and more!

Join our online panels and shape our work...

We’re looking for people affected by PH, including carers and loved ones, to provide feedback on our resources and services, and lend their voices and experience to important research projects.

Get involved in your own time, from the comfort of your own home.

Find out more about our Feedback Forum at phauk.org/PHAUKFeedbackForum Find out more about our Research Forum at phauk.org/PHAUKResearchForum

helping children to under stand PH

N EW FREE BOO K! SU ITAB LE AG E S 3 F O R -9

By following KiKi the Koala on her journey, little ones will learn more about pulmonary hypertension, and realise how special they are – just like KiKi!

Order your free copy at www.phauk.org/KiKi

Scan to discover the inspiration behind the book EMPHASIS ISSUE 1 / 2024 _PAGE 17

Hello Welcome to our second Emphasis edition of 2024. I hope you’ve had an enjoyable summer.

This

is another packed issue of our member magazine and it’s our pleasure to share so many different voices in it. We know how much you value hearing from others in the PH community, so you’ll find personal stories throughout these pages. We’re hugely grateful to everyone who shares their experiences with us to help others.

On the subject of gratitude, we’ve been blown away by all the fundraising support for our charity in recent months.

We receive no government funding, meaning we rely on your kindness to help us continue our work, and many of you have made outstanding efforts over the summer. You’ll find a small snapshot of these fundraising activities on page 38.

Here at the PHA UK we’re committed to keeping you informed about research and drug development, so please turn to page 56 to hear what happens next for the new treatment sotatercept.

Huge progress has been made in drug development over the last few decades, and pharmacist Josh Miller maps this journey on page 30.

We’re lucky to have so many skilled healthcare professionals working in pulmonary hypertension, and we enjoy helping you get to know them through this magazine. This issue, we introduce Clinical Nurse Specialist Sam Ali on page 58, and Senior Clinical Fellow Chris Chew - who has come all the way from Australia to learn from the UK - on page 66.

Finally, as summer draws to a close, our thoughts are turning to our annual awareness campaign. PH Day UK take place this year on Friday 1st November, so please keep an eye out for details and get behind it if you can.

PH DAY UK 2024

WE’RE LUCKY TO HAVE SO MANY SKILLED HEALTHCARE PROFESSIONALS WORKING IN PULMONARY HYPERTENSION

Iain Armstrong Chair of the PHA UK media@phauk.org

EMPHASIS ISSUE 2 / 2024 _PAGE 3

WHAT’S INSIDE? ISSUE TWO 2024

16 Finding purpose with pulmonary hypertension How art, animals, and online studying help Marisa

32 24 Celebrating our little miracle

Aidan’s parents made every day of his short life count

LIVING A GOOD LIFE WITH PH Rashida Begum on why she now celebrates every little thing…

48 “There are incredible life experiences out there that can bring you joy each day”

PHA UK member Victoria reflects on her journey as she prepares to turn 40

Emphasis magazine is produced by the PHA UK. This magazine is intended only to provide information and not medical advice on individual health matters. The PHA UK will not be responsible for readers’ actions taken as a result of their interpretation of this magazine. We encourage readers to always discuss their health with their doctors and medical team. Registered Charity Number: 1120756. © PHA UK.

In their

56 Keeping you informed What happens next for the new drug sotatercept?

10 “You soon realise thatet you life events will have to naviga with a chronic condition”

ht Alex Charlesworth shares an insig day ding to her wed

66 Learning from the best

Senior Clinical Fellow Chris Chew on swapping Australia for London to take lessons from our PH service

18

“You’ve got to keep trying”

21

“I have lots to continue to look forward to”

Pam Ellis on her ongoing weight battles – and how things are finally star ting to change…

e his Ray Harding celebrates 22 years sinc ery surg omy rect pulmonary endarte

ur once again” 36 “I’m living my life in colo ative care for the Sue Deutsch thanks palli positive changes in her life

to walk in the 42 “Simply being ablelike the greatest gift” countryside feels

nt The difference that star ting treatme nett Ben t has made to Margare

up, because 64 “It’s important not to give out there.” there is so much help

Liz Gibbs is learning to live with the limitations of PH

REGULAR FEATURES

THE BEST OF THE REST

6

13

Upfront News, musings and more

38 Fundraising Focus

A snapshot of your support over the last few months

45 Food for thought

Recipes, advice, and more

50 Raya’s column

Coping with hot weather and pulmonary hypertension

58 Hello, my name is…

This issue, meet Sam Ali of Royal Papworth Hospital

60 Kids Corner

Our regular section for children affected by PH

14

The global gathering driving PH care What went on in Barcelona

Study points to potential of home-based blood testing What it might mean for you

29 Teen Talk

With PHA UK member Emily Gravenstede

30 Mapping the journey of PH treatments

The progress of drug development over the years

52

Help to access Personal Independence Payments The online tool to make things easier

54 Let’s talk about sleep…

Why it matters and how you can get more

Get in touch: PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH office@phauk.org 0300 373 5367 @PULHAUK @PHA_UK @pha_uk_insta @pha_uk No part of this magazine may be reproduced without the prior permission of the PHA UK.

UPFRONT News, musings and more...

Coming together to produce the best materials

Another big tick for PHA UK resources Following a rigorous assessment, our information resources have been re-certified with a Patient Information Forum (PIF) quality mark for the fourth year running.

The ‘PIF TICK’ is only awarded to organisations who follow high quality standards when producing health information. Find out more at pifonline.orguk

PAGE 6_ EMPHASIS ISSUE 2 / 2024

Can we mention the 'c' word?

We know summer has barely ended, but as this is our last issue before December, we wanted to remind you that we’ll be selling PHA UK Christmas cards again this year.

They will be live to order via our website, or by calling 0300 373 5367, from October.

QUOTE OF TH E ISSU

E

ag azine, m is as ph m E t u o h it w t “My husband says tha om every fr h uc m so s t e g e H . st he would have been lo t know n’ ld ou w e h , e r e h t t n’ issue. He says if it was hat to do.” or w s, g in h t d or w to ow h sed with PH in 2011.

Marisa Evetts, diagno on page 16.

Read Marisa’s story

Celebrating PH nurses…

Organised by the Royal College of Nursing, Nurses’ Day 2024 was an opportunity for patients to celebrate those who make such a difference to their care. We asked our Facebook followers to tell us what makes their PH nurses special, and this is a small snapshot of the many comments received…

Rebecca My PH nurses are amazing

at going that extra mile, always putting you at ease with the support and care they give

♥

Fiona Shoutout to the PH team where my husband was diagnosed and had an IV line fitted. The treatment was a game-changer and the aftercare has been outstanding.

Karen The nurses at my PH unit are

fabulous! I feel very cared for when I am there and when they call to check on me. Thanks to all of them!

Nicki All the PH nurses that I’ve had to

deal with are excellent. They always take the time to listen, and I never feel like a number or just some random patient, they know who you are and they know your individual case.

Lucy I honestly would have been

lost without my PH nurses. The care, support, love and knowledge they have is second to none and I owe them so much.

♥

More UPFRONT EMPHASIS ISSUE 2 / 2024 _PAGE 7

UPFRONT News, musings and more...

Showing our support to the

PH Patient Research Day

It was a pleasure to support and be part of the PH Patient Research Day, held at London’s Royal Brompton Hospital for their patients earlier this year.

Organised by the specialist centre’s research team, there were some fantastic talks, and it was especially good to hear two patients being interviewed about their experiences of clinical trials.

We asked patients attending the event to tell us the best advice they would give someone newly diagnosed with PH.

PAGE 8_ EMPHASIS ISSUE 1 / 2024

Karen

Mark

Remembering Alan and Nisha The UK’s specialist PH service is mourning the sad loss of two of its healthcare professionals in recent months.

Alan Greenhalgh, Research Nurse within the Freeman Hospital, had been a nurse for 30 years – with almost a decade in pulmonary hypertension.

His colleagues remember him as a conscientious, thorough, and very caring nurse; someone with great attention to detail who always went the extra mile for his patients. His mantra was always to live for the day.

Nisha Abraham, Clinical Nurse Specialist at Royal Papworth Hospital, cared for PH patients for many years and she will be remembered by her colleagues for her positive outlook, sense of humour, warmth, dignity, and courage – and for her unwavering dedication to the pulmonary hypertension service. She will be greatly missed by all who knew her.

Study opportunity: PH in newborns Researchers from the University of Liverpool are trying to understand the most important treatment outcomes for babies with pulmonary hypertension, and they need the help of parents.

Taking part will involve a single online interview with a member of the RePHyNE (Registry of Pulmonary Hypertension in Neonates) study team. You can register your interest in taking part in this study at bit.ly/NeoPH.

EMPHASIS ISSUE 1 / 2024 _PAGE 9

My

WEDDING DAY WITH PH Alex Charlesworth married husband Sean this spring – celebrating the biggest day of her life five years after finding out she had pulmonary arterial hypertension.

These are her reflections...

W

hen you are diagnosed with PAH at 29, you soon realise that you will have to navigate life events with a chronic condition. Sean and I had been together for ten years when he finally proposed, so it was hardly a surprise, but I knew there were some obstacles I would have to smash.

Finding ‘The Dress’ with an IV pump

After we had put a date in the diary and had booked a lot of the main suppliers, it was time to find the dress!

I was so excited about this part, and I was not going to let the pump for my IV medication get in the way.

PAGE 10_ EMPHASIS ISSUE 1 / 2024

I wear shorts under dresses all the time, so this was not going to be any different.

For those wondering, I get yoga shorts with pockets from Amazon, and they do loads of colours. I just got nude so that they wouldn’t be seen under the dress.

I knew that I didn’t want anything too fitted anyway because I wanted to be able to dance in the evening without being restricted. Therefore, finding something that would hide the pump wouldn’t be an issue.

Having had the line and the pump for five years, I have gone beyond the point of caring if people can see the line, but I wanted it to be invisible for this one day!

This meant that the straps were important.

I had the line repaired in 2022 so it is longer than it used to be. Usually, I loop the line under the dressing. However, to hide it better, I changed the dressing the night before and made the line go straight down. This also meant that there were no tatty edges to the dressing either.

The dress I chose was the first one I tried on. When people say, ‘you just know’, they are definitely correct.

Logistics on the day

Luckily, I am stable and otherwise quite fit, so I knew that I would be ok on the day energy-wise. However, the date we chose meant that I had the week off before to prepare, and the week after to

“I knew there were some obstacles I would have to smash” recover. I am a primary school teacher, and our date was in the middle of the Easter holidays.

I always take my tablets at 10am and have an alarm on my watch. I was not wearing my watch on the day, so I got my sister to set an alarm so that I would remember to take them in the chaos of getting ready.

Those of you on the pump know that it comes with certain logistical needs.

I usually change the pump over between 7pm and 7.30pm, but I didn’t want the day interrupted by pump-changing. Also,

the dress had many layers so it would have been tricky to do anyway.

I decided to change the pump over when I got into my dress at about 1pm.

This worked out perfectly. However, it did mean that I had to leave the change-over to the last minute in the following days to get back to my normal time.

Hopes for our honeymoon

As everyone with PH knows, flying can be a problem. Due to all my usual test results, I didn’t need a fit-to-fly test to fly short haul. My team were happy to just

write me a letter explaining why I had the meds, all the bits for the IV, and why I couldn’t disconnect from the pump to go through security. I have flown to Madeira, Italy and Tenerife without needing a fit-to-fly test with no problems at all.

However, we wanted to see if we could go further away for our honeymoon so my specialist centre arranged a fit-to-fly test to see how I would cope with long haul. I went and had the test and was told I was fine to fly anywhere without any oxygen. Now we just need to decide where to go as the world is our oyster!

You can find out where Alex ends up on honeymoon, and how she navigates married life with PH, by following her on Instagram @alex.ph90

EMPHASIS ISSUE 1 / 2024 _PAGE 11

A special kind of gift Gifts in Wills help us continue our work to support people affected by PH – making a huge difference to those dealing with this challenging disease.

Could you or your family consider thinking of the PHA UK in this very special way?

Legacies, however small, play a critical role in supporting our work and securing the future of our charity.

“I updated my Will recently and decided to include the PHA UK as a way of giving something back for all the support I’ve received. It feels like a thank you from me and my family and it will help them to continue their work to help others.”

Julie, PHA UK member since 2012

Scan to find out more about gifts in Wills or visit phauk.org/RememberingOurCharity

Thank you so much.

THE GLOBAL GATHERING

DRIVING PH CARE There’s something rather special about over 1500 PH professionals, representing every corner of the world, coming together in the same place.

Here at the PHA UK we were privileged to be invited to the 7th World Symposium on Pulmonary Hypertension, hosted by the World Health Organisation and held in the Spanish city of Barcelona during the last weekend of June.

We were one of a handful of patient organisations exhibiting at the event, which takes place every five years and has a huge influence on patient care.

The symposium is split into different ‘taskforces’, made up of the world’s leading experts, who make recommendations in areas including treatment algorithms, how PH is classified, clinical trial design, and more.

PHA UK Chair Dr Iain Armstrong was invited to be part of the ‘patient perspective’ taskforce in 2018, and his influence led to the topic moving to the top of the bill in 2024.

We brought the UK patient voice to proceedings by sharing a specially curated booklet of personal experiences from across our membership.

The faces behind these stories made up the front of our stand (pictured above right), as a reminder to everyone gathered of the importance of putting patients first.

You’ll find these stories at phauk.org/PatientsFirst.

Attendees were encouraged to show their commitment by posing with our special signs, and it was great to see so many from the UK specialist service getting behind our campaign.

Research conducted by our charity was shared by international presenters throughout the symposium, so your voices - captured in our surveys - are truly being heard worldwide. And EmPHasis-10, the quality-of-life measure developed by the PHA UK, was referenced multiple times during proceedings.

Best practice was shared, and valuable connections were formed, at what was a truly inspiring event. PH may be a rare disease, but there is a global army of experts working hard to advance treatment and care – as this unique symposium showed.

.

EMPHASIS ISSUE 2 / 2024 _PAGE 13

Research points to potential of home-based blood testing A study has shown that finger prick blood testing, which can be carried out at home, might save people with PH having to travel to hospital to have their NT-proBNP levels checked.

C

arried out by researchers from the Royal Brompton Hospital and Golden Jubilee Hospital, the nationwide study looked at whether using finger pricks to draw blood was an effective way of measuring NT-proBNP levels – markers in the blood which can show how much strain the heart is under, and help doctors assess progression or improvement of PH. This testing is normally carried out at least twice a year, and at present, it requires patients to have their blood taken from a vein at their specialist centre, local hospital, or GP practice.

The results of this study showed that drawing a very small amount of blood by pricking the finger - something which can be potentially carried out by patients themselves at home - is also effective, with the potential to lessen the number of hospital visits required.

Over 100 patients from across the UKs adult PH centres took part in the study, which involved them having additional blood taken in this way during their routine clinic visits.

PAGE 14_ 12_ EMPHASIS ISSUE 12//2024 2024

Blood was also taken from a vein, in the usual way, to enable the researchers to compare the markers that could be detected in both samples.

If patients perform finger prick testing at home, they will be required to post the sample to a third-party testing company – so the research also assessed the impact of postal delays on results. Findings here showed that delays (of more than 3 days) would invalidate the results, so a new sample would need to be sent.

Dr Harrison Stubbs, Clinical Fellow at the Scottish Pulmonary Vascular Unit, was one of the researchers behind the investigation.

He told us: “It was a real collaborative effort, and essentially, the findings have shown that finger prick blood testing is a reliable way of measuring right heart strain. It’s shown it to be a valid way of assessing NT-proBNP levels remotely, as it’s as reliable as standard clinical testing.

“Home testing won’t be for everyone; it will likely only be for

those who have stable PH and who are able to carry it out themselves, but centres will make their own decisions around this.”

Although the study has shown that blood taken via finger pick testing gives reliable results, because the samples were taken in a hospital setting, there are question marks over whether it will be as reliable if it’s performed by patients at home. A further investigation, with a cohort of 50 patients, is being planned to test this.

The findings from this study have been published in prestigious medical journals and Dr Harrison told us that overall, the results should be seen as a really positive step forward.

He added: “We know there is an appetite from some patients for remote monitoring and although they don’t want to stop seeing doctors, certain people are keen to have some control over their results and their disease.

They want a quality of life where they don’t have to travel all the time for appointments, and sit around in waiting rooms, so this could be a way of them managing some things themselves at home.

I was blown away by how willing people were to take part in this study, and as both a clinician and a researcher, it’s so encouraging to see this engagement from the patient community."

This study is a great example of collaboration between specialist centres, and of the altruism shown by patients who respond to invitations to take part in research like this.

We are mindful that not all patients are keen on the idea of remote monitoring, but some are, and it is encouraging that there may be another option for NT-proBNP monitoring for certain people.

Not all will be able to provide finger prick blood samples. For example, some may have dexterity challenges - which is often the case with scleroderma - and getting out to post the samples can also be difficult for some people. The further planned investigation to test this type of monitoring with patients in a home environment will help answer questions in this area.

Cost implications of third-party sample testing will, of course, have to be considered

as part of decisions to make this an option – and it will be down to individual NHS Trusts to decide whether this is viable.

This study has real value as proof of concept, and I’d like to echo Dr Stubbs in thanking everyone who responded to requests from their specialist centre to take part in this important research. It couldn’t have taken place without you!

Dr Iain Armstrong, Chair, PHA UK

EMPHASIS ISSUE 2 / 2024 _PAGE 15

t r a , y d Stu s l a m i n s d a n fi a s & i r a M ow PH H h t i w e s purpo

Marisa Evetts, 51, lives in Crewe in Cheshire with her husband and pets – the family she credits for keeping her going through challenging times. Completing online courses and indulging her love of drawing keeps her busy and fulfilled, as she explains...

I

t all started around Christmas 2010. I was having difficulty getting up and down stairs, I was getting out of breath, and I put on a bit of weight. I went to the doctors, but they didn’t think there was anything to worry about, so I just tried to carry on.

I got progressively worse, to the point where I blacked out trying to get to the toilet. An ambulance was called, and at the hospital, they thought I had a chest infection. Eventually they decided to give me a scan, which showed I had blood clots across my pulmonary arteries, and I was told I needed to have immediate open-heart surgery to remove them. If it didn’t happen straight away, they said, I wouldn’t be around by the morning.

The surgery took over five hours and when I came to, doctors said they’d never seen such a huge clot, and they couldn’t believe I’d had no symptoms prior to it getting that bad. They thought it must have been caused by a fall, or a long flight – neither of which I’d experienced.

I was discharged and expected that to be it, but five months after the surgery, in June 2011, I found myself out of breath again at one of my check-ups.

My oxygen saturations had dropped, and another clot was suspected, so I was admitted to hospital. They promised me they would get to the bottom of it, and I was told I had suspected chronic thromboembolic pulmonary hypertension (CTEPH). This was confirmed by a right heart catheter test at a specialist centre, and I have been

PAGE 16_ EMPHASIS ISSUE 2 / 2024

living with the diagnosis ever since.

I was previously healthy, so this all came out of nowhere. It was all such a shock, and ‘life-altering’ is the only way to describe it. I felt so much better after the surgery, then I went backwards again, and then I found out I had CTEPH. It was very difficult to get my head around.

Adapting to an altered life I’ve been on treatment for PH for 13 years now. These days, as well as taking oral medication, I’m on oxygen 24/7 too.

I’m in a wheelchair most of the time, and I have to use a commode because I get too out of breath trying to get to the toilet.

It’s a challenge, but my specialist centre team have been so good. They treat me as a whole person and that has made such a difference over the years.

They explain everything to my husband Paul, who I’ve been married to for 20 years, and involve him fully in my care. He’s my carer, even though he still works full time.

He works from 6.30am until 4.30pm, and then he does the housework, cooking, and washing and ironing.

Pets Harley, Luna and Stormy

Marisa and her husband I can’t even get myself in and out of bed by myself. He has to help me with all of that; he supports me with absolutely everything.

My husband says that without Emphasis magazine, he would have been lost. He gets so much from every issue.

He says if it wasn’t there, he wouldn’t know how to word things, or what to do.

I don’t feel like I’m a ‘proper wife’. I feel that a wife should look after her husband and have dinner on the table when he comes home from work, but I can’t do any of that. I feel guilty sometimes that I should be doing more.

We don’t have children, because as soon as I was diagnosed with the PH, we were advised not to get pregnant. That was very difficult to come to terms with, as when we got married, all I wanted was children.

We have two cats (Lunar and Stormy) and a dog (Harley) and they have helped immensely. I call them my ‘fur babies’.

In her

On this page: Some of Marisa's artwork

They are my little family, and they know when my PH is playing up.

When things are bad, they will curl up on my lap and put a paw on my hand, and it’s their way of saying 'I know you’re struggling today'.

Getting creative and challenging my mind Because Paul goes out to work full time, I spend a lot of time on my own, but the animals help, and I try to keep myself busy.

I do Open University courses [online accredited courses that are completed from home]. Through them I’ve studied big cats - which I even got a degree in - and I’ve done seven or eight courses in total, all related to animals. The Open University are very understanding of my disease and how it affects deadlines. I’m always upfront with them about my challenges.

Completing these courses gives me such a sense of achievement. It shows that although I might be limited, there are still some things I can do.

I also do a lot of drawing and painting, usually of animals, and I’ve done ones for my PH team too.

My husband and my animals are what keep me positive. Paul has given up so much for me, that if I was to give up on myself now, that wouldn’t be fair.

Throughout everything over the last 14 years, I’ve learned that I’m stronger than I thought I was. I can achieve things if I put my mind to it, and I can rely on myself – even though I never thought I could.

What gives you purpose, or keeps you positive, with PH? Let us know by emailing media@phauk.org and we’ll share your words with our community.

EMPHASIS ISSUE 2 / 2024 _PAGE 17

o t t o g e v u o “Y ’ PHA UK member Pam Ellis on her ongoing weight battles – and how things are finally starting to change…

I

've been trying to lose weight for the majority of my adult life, a long time before I was diagnosed with PH in 2016.

Over the years I’ve done slimming groups, soup diets, cabbage diets, protein diets, cutting meals out, intermittent fasting… I even tried slimming tablets as a teenager.

It’s always been the case that after losing a stone, it just stops. It’s been miserable as despite not eating or drinking anything enjoyable, the weight loss doesn’t happen either.

I’ve been in a lot of pain with my hip for the last ten years, and I’ve been told that I need to lose five stones in order to have a hip replacement.

I have knee issues too, so along with the PH, exercise isn’t much of an option.

It can feel like a vicious circle at times because I need to lose weight to have my hip fixed, but my hip is stopping me from being able to exercise.

It all takes its toll mentally. People might think I’m an outgoing and confident person, and I might be smiling on the outside, but I worry all the time that people look at me and think I don’t look after myself.

It’s all had a big impact on my self-esteem, and that got worse after I had to stop working because of my PH. About four years ago my GP referred

me to a community health programme called ‘Live Lighter’, local to where I live in Sheffield, to help with food management.

It became clear that I was eating a healthy diet, but the weight loss still wasn’t happening. Earlier this year, after working through all the other support they offer, I was able to access a scheme that provides Wegovy* treatment – and things are finally starting to change.

Wegovy is a weight loss injection that can help to regulate your appetite and reduce cravings. I was supported onto the medication earlier this year alongside working with a nutrition coach and a nurse - who I still have regular chats with to help me through the programme - and both have confirmed that I was eating a healthy diet before.

I take Wegovy as a weekly injection, which I administer myself. It’s a very fine needle and I can’t feel it, but it did have some side effects at first, including headaches and a bit of nausea and constipation.

at th is rs ea y e es th all er ov ed n ar “On e th in g I’ve le n” ca ou y k in th t h ig m ou y an th e or m y ou ca n ta k e PAGE 18_ EMPHASIS ISSUE 2 / 2024

” g n i y r t p e ke The dose was increased every four weeks, up to the maximum amount, and I no longer have any side effects.

I’ve been on it for six months and in that time, I’ve lost two stones, which is five per cent of my body weight – the target I set myself for the first six months.

So, although it’s taking time, I’m pleased with what’s happening so far.

I’m now monitored by the Live Lighter team every six weeks and the plan is for me to continue with Wegovy for the next 18 months. So, it’s hopefully a case of onwards and downwards.

The thought of being able to do more with my grandchildren is a real incentive to lose the weight and have the hip surgery. I can’t remember what it feels like not to be in pain. It’s so wearing.

Also, if I’m fortunate enough to lose the weight and have my hip done, a big thing

I want to do is ride a horse again, as it’s something I haven’t done for 25 years.

One thing I’ve learned over all these years is that you can take more than you might think you can. You can’t give up.

You’ve got to keep trying, because the alternative is not having any life at all.

I’ve always thought that I’m a ‘glass half full’ type of girl. Of course, there have been times when I’ve been ‘glass half empty’ and I’ve had to drag myself up again. But it’s about pushing on, and not giving up on the end goal of being pain free, so that I’m able to do more with PH.”

We’ll bring you an update on Pam’s weight loss journey in the next issue of Emphasis, published in December. Please talk to your GP if you’d like to find out about referrals to weight loss programmes in your area. *The active ingredient in Wegovy is called semaglutide, a synthetic version of the hormone glucagon-like peptide 1 (GLP-1), which is released from the gut after eating and helps to regulate blood sugar levels. This in turn talks to the brain and tells someone they’re full, reducing their appetite and keeping cravings at bay. It also leads to the stomach emptying more slowly, which can help people feel fuller for longer.

EMPHASIS ISSUE 2 / 2024 _PAGE 19

From the

h ea rt

Why compassion

matters

PHA UK Chair Dr Iain Armstrong on the importance of compassion in healthcare…

I

remember my first day as a nurse well. I was in a dental white starch jacket, on Ward Central 4 at a hospital in Sheffield which is now a rather exclusive and expensive housing development.

On this day, I met George. George had lung cancer and had been admitted in an unkempt state and with lots of ‘chest pains’.

I saw him sitting in his chair, and he looked sad… very sad. He was scruffy and had, let’s just say, a ‘fragrance’ about him.

And at that moment something went through my head… ‘I am going to help you out mate’. I have since discovered this thought was stimulated by compassion.

I helped George shave, wash, and brush his teeth. We had a cuppa, and we talked.

He told me about his wife Rose, the love of a lifetime, who died in the same hospital two years ago. He described his heart pain… not his chest pain. I sat with him and un-self-consciously held his hand while he spoke.

George said I saved his life but of course I did no such thing. I just helped him regain his dignity, sat with him for a while, and held his hand.

It struck me that it was impossible to tell where George’s hand ended, and

PAGE 20_ EMPHASIS ISSUE 2 / 2024

where my hand began. Nursing exists in that space; we all exist in that space.

I often remember George as the person who taught me what it means to be a nurse.

Nurses are reminders that we are not alone, but of course we do a lot more than hold hands.

Nurses are rigorously trained and highly educated professionals. They spin around our world caring for people in every setting, from school pupils to pensioners, from prisoners to the police… and everyone in-between.

It is often the case that the first person you meet in life is a nurse (a midwife), and the last person you meet in life is also a nurse.

As nurses we consume hurting every single day. Indeed, the word compassion comes from the Latin word ‘compassio’, which literally means 'to suffer together’.

Yet at the same time we consume hurting, we seek excellence.

Any healthcare setting seeks excellence through those they serve, and as nurses we are only as good as our patients think we are.

I believe compassion is the root of excellence in healthcare and as nurses, compassion truly is our greatest strength.

Do you have an opinion you’d like to share in this magazine? We’d love to hear from patients, loved ones, and healthcare professionals too.

Email media@phauk.org

In his

y r o t s s Ray’

Celebrating my surgery:

After being diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH), Londoner Ray Harding underwent pioneering pulmonary endarterectomy (PTE) surgery in August 2002. More than two decades later, the 78-year-old is sharing his story to thank the team who saved his life – and to give others hope for the future…

I

took early retirement from my job in 2001, because of my health, but I didn’t know at that point that it was CTEPH causing my issues.

I started having investigations for my breathlessness, and eventually I spent a week in hospital having tests, which showed I had pulmonary hypertension. It was a very scary time.

I was told that I was a possible candidate for a pulmonary endarterectomy, and that there was only one surgeon in the UK who could do it. I saw the surgeon, Professor John Dunning, at Royal Papworth Hospital in January 2002 and I was offered the operation.

There was a 50/50 chance of survival at the time, and he had carried out about 100 of the operations by that point.

“I get better with every one that I do”, he told me. He was built like a rugby player, and I remember wondering how he was going to get into my lungs with hands of that size.

My wife and I spent the weekend discussing what to do,

and I made the call to accept the surgery on the Monday morning. Eight months later, on 5th August 2002, it went ahead. That date will always stick in my mind.

The surgery was a success, with all the clots removed, and I remember the care being excellent. I was told that being a positive person, I should recover well – and I did.

I was sent home after 19 days, where I’ve lived a full life ever since. I managed to go back to work, and I spent a further 16 years as a tyre salesman.

One of my sons has a house in Devon so we go on holiday there every year and I see my three grandchildren regularly.

They were all born after the operation, and I’ve enjoyed being able to see them grow up. We’re a very close family.

I have been married to my wife Jennie for 54 years and I could not have recovered as well as I did without her support and help.

Unfortunately, my health over the years still hasn’t been great – but that’s nothing to do with the CTEPH or the surgery.

In December 2018, I was rushed to hospital with pains in my stomach.

It turns out that my gut had twisted and exploded, and I had sepsis. Surgery saved my life - again - and I am now living with a stoma [an opening on the surface of the abdomen which has been surgically created to divert the flow of faeces.]

I was in the hospital bed for a month, so my right knee completely seized up and I’ve walked with a crutch for 15 years.

However, knee replacement surgery is due to take place soon, so I have lots to continue to look forward to.”

“I was sent home af ter 19 days, where I’ve lived a f ull lif e ever since” Ray and wife Jennie

EMPHASIS ISSUE 2 / 2024 _PAGE 21

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EMPHASIS ISSUE 2 / 2024 _PAGE 23

Celebrating PAGE 24_ EMPHASIS ISSUE 2 / 2024

Nothing could have prepared Nadine and Jacs Stanistreet for the news that their newborn had two rare diseases, and their time as a family was cut short after only a year. In their own words, the couple remember Aidan and his extraordinary fight.

A

idan was a little miracle.

We’d been trying to get pregnant for a few years, and it was Nadine’s last try.

So, a week later we also tried with Jacs for the first time, thinking it wouldn’t happen for either of us.

Against all odds we both fell pregnant at the same time. Nadine carried Aidan, and Jacs carried Edith. Nadine’s pregnancy was normal, but Aidan arrived early at 34 weeks, in November 2022.

He was a stocky little boy, and we were so grateful that we appeared to have a healthy premature baby when others on the ward around us didn’t.

He was home for seven weeks before Edith was born, and although he was very sleepy and seemed breathless,

the midwives assured us it was just because he was premature. It was only when Edith arrived, and we compared their ability to feed, that we realised something wasn’t right.

In two months, Edith grew quickly and overtook him in size – and Aidan was admitted to hospital as ‘failure to thrive’. Doctors said they could hear something with his heart and his oxygen sats were intermittently low.

He was in for three weeks having tests, but they couldn’t find any explanation.

It was on the last day that he finally had a proper echocardiogram, which showed thickening and dilation on the right side of his heart.

Doctors provisionally diagnosed cardiomyopathy even though it didn’t fit with a normal presentation. We went

Nadine (left) & Jacs

our little miracle Aidan & sister Edith

home without any idea that there was an acute health risk, and took on the battle of feeding tubes and milk intolerance.

On a follow-up echocardiogram in June 2023 the cardiac doctor decided to take a closer look at Aidan’s pulmonary pressures, but did not suggest there was any urgency to confirm them.

Over the summer we took the babies camping in Cornwall, not knowing how dangerous Aidan’s condition really was, and we regularly found ourselves in hospital for his blue lips and cold sweats (intermittent signs of heart failure).

The doctors who saw him could never identify the problem, and as it appeared

to resolve itself, we would be discharged on the advice that it had been a virus.

Aidan had his right heart catheter a few weeks later and the doctor told us they were the worst pressures he’d ever seen in a baby, especially presenting as well as he did. He laid it out for us, and explained it was pulmonary hypertension, the potential prognosis, and severity. We were shocked and devastated. The only thing preventing a cardiac arrest at that point had been a hole in his heart which acted as a pressure relief, like a shunt.

Continued...

EMPHASIS ISSUE 2 / 2024 _PAGE 25

Aidan only had a year... but he made it count We were taken down to Great Ormond Street Children’s Hospital within five days of the right heart catheter and we stayed there for seven weeks with the support of family and friends. It was incredibly stressful for all of us. We were totally exhausted but also making great family memories, being together and knowing Aidan was getting the medical focus he needed.

When Aidan was eventually discharged, he was on oxygen and triple therapy, including the iloprost nebuliser. He was home for a total of four days before he had to be re-admitted to our local children’s hospital with bronchitis caused by respiratory syncytial virus (RSV).

It resulted in an emergency transfer to Alder Hey Children’s Hospital where he was put on a ventilator. He fought hard and managed to get out of ICU and back onto the cardiac ward.

While recovering, he caught Norovirus which wiped him out, but again he managed to get through it.

At a similar time, we found out he had an extremely rare neurodevelopmental condition called FOXP1 syndrome, which is thought to affect just 200 children in the world.

Edith with her 'Adie Bear', named after her brother We were pushing on to get any potential support he might need developmentally, and also agreed to go for the epoprostenol Hickman line in the January to tackle the PH as aggressively as we could.

We were trying to keep him alive, whilst at the same time getting our heads around potential disabilities from the syndrome. Currently there is no known correlation between PH and FOXP1, but we don’t think it’s a coincidence that he had both conditions and hope to see FOXP1 added to the gene panel for PH. We really wanted Aidan home for his first birthday, but it wasn’t to be. He showed signs of mini pressure crisis that were mistaken for a virus, and he died suddenly in hospital, just a day after he turned one, on 23rd November 2023.

Aidan was charismatic and sociable with a great sense of humour. More often than not he was laughing and smiling and seemed happy with his lot. More than anything he adored being with his sister Edith and watching her play.

Aidan’s funeral reflected him and was a celebration of his life. It was a very fitting day. There was dancing, music and poetry from everyone who loved him. It felt like a celebration of his first birthday too, because he was never able to have that party.

You never stop thinking about the ‘what ifs’ and it’s hard to let go of what we could have changed to keep him here.

In reality, he had excellent care and a wonderful life.

Aidan only had a year, but he had a big impact in that time and he made it count. He was loved, and he loved us. We are very lucky to be his mums.

PAGE 26_ EMPHASIS ISSUE 2 / 2024

United for Aidan An outpouring of kindness has seen people touched by Aidan’s story come together to raise vital funds for the PHA UK in his memory.

His mums Jacs and Nadine spearheaded the drive with an online fundraising page set up in his memory, and friends and family made generous donations – with some taking on their own challenges in celebration of his life.

In April, Scott Blanks took to the streets of the capital to run the 26.2 mile-London Marathon, and The Mulberry Street Nursery, attended by Aidan’s sister Edith, held an event in June that raised both funds and awareness. October will see Sophie Holmes tackle the Marathon Eryri, a challenging running route encircling the highest peak in Wales.

More fantastic fundraising for Aidan overleaf

Here at the PHA UK we are hugely grateful for the kindness people have shown to our charity in celebration of Aidan’s life.

EMPHASIS ISSUE 2 / 2024 _PAGE 27

United for Aidan Battling hailstones, wind, rain and mud, Michelle Davis and her partner Kevin Rowlands ran 50 miles straight to raise money in Aidan’s name. We spoke to Michelle to hear more about their March challenge, and why the pain was worth it…

Until I decided to do the Chester Ultra, the furthest I’d run was a half marathon (13.1 miles), but Kev had done a few full marathons.

Jacs is a good friend from playing rugby, so when everything happened with Aidan, we knew we wanted to support the PHA UK with our fundraising for the event. Something so close to our hearts gave us the push we needed to complete the challenge, and we needed it, because the day turned out to have the worst weather the event had ever seen.

It was horrendous. We had hail, snow, rain, everything. But thinking about Aidan’s story, and what Jacs and Nadine were going through, got us through the really tough moments.

It took us longer than we expected to finish - 15 and a half hours - and the worst point was at about 24 miles.

My shoe was pulled off by the mud and I couldn’t get it back on, so I had to run through it barefoot.

The support we got on the day was a real highlight though. People popped up at different points to cheer us on – family and friends, and our colleagues from Ellesmere Port Fire Station too. That meant a lot.

We were made up with how much we raised. I’ve never really done any fundraising before, and we set our target at £500, but ended up with over £1,700 including Gift Aid. Raising that much for Aidan made it all worth it, and it was a great way of sparking conversations with people about PH too.

For a few days after the event, I swore I’d never do anything like this again. But now my body has healed from it, I think I’d never say never!

The support we got on the day was a real highlight

PAGE 28_ EMPHASIS ISSUE 2 / 2024

Emil y

Gravenstede

You might be reading this in nice hot sunny weather during the summer holidays. Well, I’m writing this in Spring, so I thought I’d tell you about my plans for the summer holidays.

My main plan (which I’m most excited about) is that during August, I’m going on a holiday to Mallorca with my family and friends.

We’ve hired a massive villa with a swimming pool and a beautiful view. Personally, I’m extremely excited to sight-see, because some of the images I have seen are very impressive and scenic.

We should have a whole week of warm weather and swimming in the sea to look forward to. I’m also excited to try the local cuisine and maybe go on a boat trip. I’ve already bought myself a cool new pair of sunglasses and I have lots

more holiday clothes shopping to do before we go.

The other big plan I have for the school holidays is a ‘Summer Rock Workshop’ with StageCoach Performing Arts.

That will be a week of fun rehearsals and games and then we will put on a show at the end of the week.

I’m going for a visit to GOSH to see the PH team this summer too and we are going to stay over, so hopefully I might get to go out in London for dinner and maybe even see another musical there.

*Last issue, Emily shared the challenges of coping with a fractured femur and cartilage and ligament damage.

I hope everyone reading has a brilliant break from school in the summer. I am going into year nine in September, so will be choosing my GCSE options next year.

Last thing, in case you are wondering, my knee is LOADS better*. I’m still doing physiotherapy, but I can pretty much do everything (walking, jumping, dancing etc) again now.

Emily in her new sunglasses

Emily is 13 an d h as h ad PA H sinc e she w as a baby. Following a fr us tr at ing leg inju r y at t he star t of t he ye ar, she is now looking fo r war d to a f un-packed sum mer…

EMPHASIS ISSUE 2 / 2024 _PAGE 29

Drug development has come a long way in the last few decades, and science is painting a brighter picture for the years ahead. Joshua Miller, a pharmacist at the Scottish Pulmonary Vascular Disease Unit, explores the past, present and future of treatments for pulmonary hypertension...

I recently attended a meeting of PH professionals from around the UK, and there was a lot of discussion regarding the past, present and future of the disease. I thought it would be good to recap how far we have come in terms of treatments, and what the future may look like.

TH E

Pulmonary hypertension can be broken down into five main types, however, treatment is typically only offered to patients with pulmonary arterial hypertension (PAH - group 1), pulmonary hypertension secondary to lung disease (group 3) and chronic thromboembolic pulmonary hypertension (CTEPH – group 4).

T S PA When pulmonary hypertension was first discovered as a disease in the late 1900s, we only had supportive medicines.

This includes blood thinners to prevent blood clots, oxygen for those who have low oxygen levels, and water tablets to prevent and relieve fluid accumulation.

Whilst these treatments helped with symptoms, none treated the high pressures within the pulmonary arteries, and therefore did not help improve life expectancy.

PAGE 30_ EMPHASIS ISSUE 2 / 2024

T

MAPPING THE JOURNEY OF PH TREATMENTS ))) E H

T N E S E PR

In 1996 there was emerging evidence for the use of synthetic prostacyclin to reduce pulmonary artery pressure. Prostacyclin is a circulating hormone that causes blood vessel relaxation amongst other effects. This medicine was later named epoprostenol and branded as ‘Flolan’. This was the first targeted treatment for pulmonary hypertension, which helped reduce the pressure and not simply treat the symptoms.

Epoprostenol is a continuously infused medicine, which means it is given through a long-term cannula (a fine tube) which commonly sits within a vein in the upper chest. Current guidelines suggest this continuous intravenous therapy should be used in patients who have more severe pulmonary arterial hypertension (group 1). Treprostinil is a similar drug which is normally delivered under the skin, which some patients find more agreeable.

In 2001, bosentan, a new oral tablet, was manufactured. It works by reducing the degree to which blood vessels are narrowed, therefore causing a reduction in the blood pressure in the lungs. Ambrisentan and macitentan were developed shortly after in 2007 and 2014. All three tablets are taken orally and need varying degrees of blood monitoring. These medicines have some degree of side effects, however, they are generally well tolerated.

In 2005 sildenafil, better known as Viagra, was licensed for use in patients with pulmonary hypertension. Sildenafil works by actively promoting blood vessel relaxation,

THE F UT U

E R Sotatercept is a new drug currently in clinical trials which has shown very promising results for patients with pulmonary arterial hypertension (read more about this on page 56).

This is potentially the first medicine to target the underlying cause of pulmonary arterial hypertension, and not simply aim to reduce pressure.

There are also many studies looking at easier ways to take medicine. We know that taking multiple tablets or infusions can result in side effects which can be difficult to manage in some patients. By using different applications, it may give better results with fewer side effects. For example, there are currently studies looking at inhalers or nebulised options which mean medicines can get into the lungs where they are needed without causing side effects in other parts of the body.

In a more general view of the future of drug treatments, an upcoming field of medicine known as pharmacogenomics looks specifically at ‘patient-targeted medicines’. In a nutshell, pharmacogenomics looks at individual patient genes to work out how a medicine will affect them personally.

which subsequently reduces pulmonary artery pressures. Its once-daily counterpart tadalafil was licensed in 2009 for use in pulmonary hypertension and can be used in patients who may not tolerate sildenafil or would benefit from a once-daily administration.

Although generally well tolerated, these tablets cannot be taken with certain medications.

Other newer agents made available more recently include riociguat and selexipag.

Riociguat is often used as an alternative when sildenafil and tadalafil are not tolerated. Selexipag is an oral agent which is suitable for patients who are more stable or may not tolerate intravenous or subcutaneous (under-the-skin) medications.

As with all the above therapies, these medications are only started by specialist PH teams, and patients should be carefully monitored in the first few months.

We are aware that all of the targeted treatments we have currently focus on one main aspect – to relax the blood vessels, which can reduce pulmonary artery pressures. We currently have no treatments that target the underlying cause of the pulmonary hypertension. For example, we understand that in some types of pulmonary hypertension, the blood vessels in the lungs are too narrow due to the overgrowth of cells in the blood vessel walls.

Current medicines help to relax these blood vessels but as of yet we have no way to stop this over-growth from happening in the first place.

We know that not every medicine gives the same response to all patients. By researching into pharmacogenomics, it may give the option to have individual tailored medicines and doses that are guaranteed to give beneficial results without harmful side effects. It’s almost like a made-to-measure suit or dress – it will only fit you!

))) A FINAL NOTE… There are increasingly more clinical trials within the world of pulmonary hypertension currently.

Clinical trials allow patients to be enrolled (if eligible) and gain access to either new medicines or current medicines that may be used in different doses, preparations or indications.

Since pulmonary hypertension is a rare disease, it can be hard for clinical trials to recruit large amounts of patients to demonstrate results.

However, all PH centres in the UK have active research departments and patients should be encouraged to ask about upcoming trials with their clinical teams.

EMPHASIS ISSUE 2 / 2024 _PAGE 31

Living a

good life with PH

"M

RASHIDA BEGUM was diagnosed with pulmonary arterial hypertension in the spring of 2023, and after receiving specialist care, joy has returned to her world. The mum-of-four from Bradford recounts the challenges of her journey, and explains why she now celebrates every little thing…

y symptoms started in November 2022, about six months before I was diagnosed. I was really out of breath, and I couldn’t walk properly; it was really getting to me.

I used to do lots of walking, and I lifted heavy things, but suddenly just getting out of the car and to my front door was an absolute mission.

I had a cough, and I couldn’t even talk properly because I was so breathless. My GP simply suggested that I should lose a bit of weight.

Eventually I started having blackouts, and the coughing and the breathlessness was stopping me from sleeping.

A waiting game

One night, I passed out and was taken to hospital by ambulance.

Scans showed my heart was enlarged, but they didn’t tell me why,

PAGE 32_ EMPHASIS ISSUE 2 / 2024

and I was kept in for a week with beta blockers and blood thinners.

An echocardiogram even showed the right valve of my heart was leaking.

I was referred for further tests but was sent home in the meantime, as there was a long wait for everything.

My situation was the same; the breathlessness was getting worse, and I had another blackout. I eventually paid to see a private cardiologist, and he just told me to take an inhaler.

Another coughing fit led to me passing out again, and I spent another week in hospital, but they still couldn’t work out what was going on. When I was discharged, I was back to square one again.

By this point I couldn’t even lift my legs, or physically put one foot in front of the other. I couldn’t breathe, I was still blacking out, and I was in A&E every other night.

It was very scary, and although my children are all adults, it wasn’t nice for them to watch me have the blackouts.

With daughters Khansa and Musqaan in hospital

In her

"My specialist centre team are just amazing" Continued overleaf...

EMPHASIS ISSUE 2 / 2024 _PAGE 33

Light at the end of the tunnel

With daughter Musqaaan

Losing hope

I remember having an outpatient appointment at my local hospital and I had to go in a wheelchair because I was finding it so difficult to walk by then.

The lifts weren’t working that day, so I tried to take the stairs, and I remember it as one of the worst days of my life.

I couldn’t breathe, and I just thought ‘this is it’. I couldn’t see how I was going to survive.

My friends and my sisters helped to keep pushing the hospital for answers, and if we didn’t push as much, I don’t think I’d be here today.

Finally, I was referred to a specialist centre, but I had to wait for two weeks as an inpatient at my local hospital first, until a bed there became available. I missed Eid [an annual Islamic celebration], the last ten days of Ramadan, and my daughter’s 21st birthday whilst I was waiting. It was a horrible, horrible time.

Once I got to the centre, I had a right heart catheter which showed sky-high pulmonary artery pressures and the diagnosis of PAH was confirmed.

That’s when everything changed.

PAGE 34_ EMPHASIS ISSUE 2 / 2024

I was started on oral medication, and it’s been a lifeline. It feels like a miracle, because it’s made such a difference.

My specialist centre team are just amazing.

They explained everything so well to me, and it’s a special feeling every time I go there. They have made me feel so much better in every way.

My religion (I’m Muslim) is about hope and believing that God will pull you through. I had faith that God would take me to the specialist centre at the right time, and it all happened the way it was supposed to happen.

When I first got there, I couldn’t see any light. I was giving up, and I wasn’t the same person I am now. I definitely got to the right place at the right time.

The care I received gave me a boost and made me want to get better to see my children and grandchildren. Now, I live for that. I take my tablets on time, and I try not to overdo things as I want to be a part of their lives for as long as I can.

to me, and I can’t fast anymore because of my medication, which does make me feel a bit down at times because it’s something I’ve done my whole life.

But my religion excuses me from fasting because it doesn’t allow you to burden your body with more than it can handle, and illness removes my sins.

I am grateful to all the NHS staff I’ve come across for not ever judging me and for being very kind and understanding of my beliefs.

I love to travel, but the idea of flying with PH was scary at first. I’ve conquered that fear though, as now I simply cut long flights into two. For example, my son lives in Quatar, so I fly four hours to Istanbul, spend some time there, and then get another four-hour flight onwards. I think it’s amazing that I can still travel and enjoy life, and it’s important to celebrate every little thing.

Before the PH, I felt like I was invincible. I take things easier now, but I still do things I enjoy.

"

Balance and happiness

I can now do a lot of things that I used to, because treatment has helped me so much. But I do listen to my body, and I know when to stop.

It's about trying to find that balance.

I’ve found eating better has made a huge difference to how I feel; and I believe good nutrition is helping me to live a good life with PH. My religion is important

Rashida with her eldest daughter Nidah (above) and her sister (below)

Is excessive worry or anxiety consuming you?

S E LF - H E LP P RO G R A M M FROM THE E PH A U K

You don’t have to suffer alone. Our free self-help programme has

been developed with psychologists specifically for people with pulmonary hypertension – and 100% of those who tested it said it helped with their anxiety. Based on Cognitive Behavioural Therapy (CBT), the programme consists of four workbooks designed to complete in your own time at home.

Order the free programme by scanning the code, visiting phauk.org/HelpForAnxiety or calling 0300 373 5367

"I'm happier, more relaxed, a more confident nd making the prin since part of everyda ciples y life.

Thank you!"

PHA U K me

mber

In her

“I’m living my life in colour once again” Sue Deutsch is 73 and she lives in Worcestershire with pulmonary hypertension. Here, she reflects upon decades of health challenges and thanks palliative care for the difference it has made to her quality of life.

It Sue (right) with one of the St Richards nurses.

St Richard’s Hospice is based in Worcester.

Visit www.strichards.org.uk to find out more about them.

PAGE 36_ EMPHASIS ISSUE 2 / 2024

all started in 1972, when I developed a bone marrow disease called agranulocytosis. This returned when I was living in Spain in 1979, resulting in organ failure. I was in hospital for four months, while my little boy was just 18 months old, and that was very hard.

I was doing pretty well until Hepatitis C showed up. It took many years to show itself, and by that time much damage had occurred to my liver and other organs. Although it has now cleared (leaving a legacy of cirrhosis), it was that which laid the groundwork for everything that happened later on.

In 2002 I returned to the UK after 30 years of living in Spain. My life had been colourful, vibrant, and I knew lots

of interesting people. It was a noisy life, with lots of friends and experiences.

I began to get unwell after my return to England, with an immune problem, and the Hepatitis C. In 2009 I developed Non-Hodgkin lymphoma (a type of cancer) and from then until 2015, my life was taken over by hospital visits relating to all of these things. My health then settled, and I was feeling well; better than I had in 16 years. But on one day in 2021, everything changed.

A life-altering diagnosis

I remember the day clearly. It was boiling hot, and I was walking back from the shops with my young granddaughter when I experienced a sudden pain across my chest, and I couldn’t breathe. From

A hanging basket made by Sue during a hospice workshop

then, I just seemed to go downhill.

I became more and more breathless, to the point where I couldn’t walk more than four steps without having to stop.

I had real trouble getting to the bottom of what was wrong.

I was given my official diagnosis of pulmonary hypertension by a PH specialist at the Royal Free Hospital in December 2021, the week of my mother’s funeral.

It’s all a bit hazy now because there was so much going on, but I know I lost the will to live.

And I knew that I couldn’t do anything.

So much for my plans for more travel… Before, I would get in the car and go explore for hours by myself, but I could do nothing anymore.

I was totally dependent, and I’m not used to being dependent on anybody.

It was really hard, and it put me in a very bad place.

I came across the PHA UK, and they sent me a lot of information, including a booklet about palliative care. I looked at it and thought it just wasn’t for me.

Opening my mind to palliative care

In January of last year (2023) I went to see my GP, and she happened to mention a ‘Living Well’ programme run

by St Richards Hospice, my local hospice.

I looked it up and it seemed interesting, not as I imagined, so I agreed to a referral. I was contacted by phone for the assessment, and they explained the different projects they had going on.

I was invited for a taster day for their therapeutic programme, which is a six-week project involving weekly visits to see nurses, physiotherapists, occupational therapists, art therapists, creative therapists, and more.

Before I went along, I was really apprehensive. When you say the word ‘hospice’, it is horrible in your mouth.

It feels like a strange thing to be saying to people, so I didn't. I just said, ‘I’m going

to St Richards’, and they could just guess whatever that meant.

That first day I was there, I began to relax. I felt I was ‘contained’, and there were other people there who knew exactly what I was going through – maybe not the PH specifically, but the situation.

I remember this very clearly. I came home after the first visit, and I had the PHA UK palliative care booklet in front of me, and my sense of relief was enormous. I felt like a weight had been taken off my shoulders.

Before, I felt like I was an immense burden. It felt like my whole world had shrunk and I felt so alone.

But the hospice has changed that.

That first visit, they had some plants outside for sale and I bought a very small winter jasmine, which I planted when I got home. In the year I’ve been attending the hospice it’s grown so much and it’s glorious (pictured below in May 2024). It’s symbolic of the growth, expansion and renewed quality of life that engaging with the hospice's Living Well centre fostered.

It’s so helpful to have somewhere to go that doesn’t just help me clinically, but that has so many things I can get involved in.

They offer courses on coping with illness, Tai Chi, relaxation, wellness and nature, and more. I belong to their art group, I receive counselling there, and I’ve done a journalling course. I feel like I’ve found myself again.

The cradle that caught me

Perhaps the single most important thing about my hospice experience is that I feel relaxed and have regained a sense of trust.

When I left that very first day, my sense of relief was enormous. I had found somewhere that empathically understood all the different levels of challenges I was going through.

Aside from the familiar feeling of returning optimism and the potential renewing of a ‘can-do’ attitude and ‘I know how to do this’, it’s hard to put into words the enormous difference the Living Well centre at St Richard’s Hospice has made to me.

I can sum it up like this, though: After my diagnosis and with all of the symptoms I was experiencing - because I was really ill - I was living my life in a monochrome black and grey. Now today, with all of the support from Living Well, I can honestly say I’m living my life in colour once again.

Everything I have learnt in the past has served me well and continues to do so. But this is bolstered by the care, support, and any necessary assistance from all the experienced, wonderful people that make up the team at St. Richard’s Hospice. They truly are the cradle that caught me.

The jasmine a year into its growth

You can find out more about palliative care, and how it can help you, by ordering our free publication. Scan the code or visit phauk.org/PalliativeCare

EMPHASIS ISSUE 2 / 2024 _PAGE 37

N I S I A R D N U F

G

S U C O F

We’ve been blown away by all your effo rts over the last few months!

This is just a small selection of what you’ve been up to…

Remembering Margaret "She was the strongest mum, wife and granny we could have asked for, and she kept fighting until her last breath" These are the words of Margaret McLaughlin's daughter Christine, who sent us these photos of the family's fundraising efforts in her memory.

A fun-filled race night included a raffle with generously donated prizes, and information about PH was spread around the tables to help people understand more about the disease.

The Edinburgh Marathon was a soggier affair, but the rain didn't stop the dedicated fundraisers smashing their challenge in Mags' memory.

Definitely summit to be proud of...

Sarah Renton told us she 'loved every second' of her sponsored hike up the highest mountain in Ireland. She climbed to the top of Carrauntoohil on a beautiful early summer day and was rewarded with outstanding views.

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Clocking up the miles

10ks, half marathons, full marathons and more…

These fantastic fundraisers have truly gone the extra mile in their sponsored runs this year!

Duncan Craig

& Rory

Stacey

Aidan

Olly & Jonny

Mark and friends

Erin & Katie

Steve Chelsi Alicia Suzi & Richard

Your kindness ma kes

a difference

We are an indepe nden funding, so we rely t charity with no government on the kindness of to help us support our fundraisers people affected by pulmonary hypertension. From ba to motor racing - an ke sales to bike rides, marathons d everything you’ve feature - we’re cons seen in this ta supporters go to in ntly amazed by the lengths our our name.

We are so grateful for every penny ra ised!

Find out more, ge t inspired, or requ es t your free fundraising kit, by scanning the code on the right.

More fabulouser fundraisers ov>> the page >>>> EMPHASIS ISSUE 2 / 2024 _PAGE 39

Brilliant bracelets

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Shane Hackett raised his fitness levels as well as sponsorship w hen he walked 5k m on every day of May. He co vered a total of 15 4km across the month, supp orting our charit y in memory of someone spec ial to him.

What a great idea for a fundraiser Jason Smith asked for donations in return for having wet sponges thrown at him in stocks at his local fair - raising £170 in memory of mum Lucinda.

Sea, sand and ste ps

Mark Bernhardt’s coast to coast wal k raised over £1,800 earlier this summer .

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EMPHASIS ISSUE 2 / 2024 _PAGE 41

In her

Delayed diagn Margaret’s story

When Maragret Bennett’s symptoms were put down to her liver disease, she was told she wouldn’t see Christmas. It was a stroke of luck that led to her correct diagnosis of PH, and after starting on treatment, life is looking very different…

I

was told I had the immune system disorder Common Variable Immune Deficiency (CVID) in 2003 – a diagnosis which itself took 30 years to get. In 2011, this caused Nodular Regenerative Hyperplasia of the liver, a rare autoimmune condition with no cure.

I was managing quite well until a couple of years ago, when I started becoming breathless and experiencing fluid retention. It got to the point where I could no longer walk up the stairs without having to stop halfway to catch my breath, and the swelling was out of control, so in October last year (2023) I was admitted to my local hospital.

They drained fluid from my abdomen and ran lots of tests, which included an echocardiogram – for the very first time.

The results of this scan were referred to the cardiology team. A registrar came in to talk to me about them, and he’d obviously missed the training on how to deliver bad news sympathetically.

I was told quite bluntly that I was in extreme heart failure, and doctors didn’t

PAGE 42_ EMPHASIS ISSUE 2 / 2024

think I would last more than a few weeks.

I wouldn’t make it to Christmas, and I was being referred for palliative care.

The cardiology team’s advice was to ‘give her diuretics and keep her comfortable’. I felt like I’d been written off. It was absolutely horrific; there’s no other word for it really. This was 5pm on a Friday, and I spent the weekend trying to deal with all this news I’d been given.

On the Monday morning, it was a different liver consultant on-shift, and this changed everything. It was he who suspected it may be pulmonary hypertension, rather than my liver, that was causing the heart failure.

I was referred to a specialist centre, where I had a right heart catheter test which confirmed the diagnosis.

This represented a huge shift in my prognosis and my outlook. I was started on oral medication, and when I was discharged, the consultant said ‘I will see you here again in three months’. That’s when it hit me that I was now expected to live that long.

nosis

I was hoping that the treatment for my PH would simply stop the symptoms from getting worse, but I’m now able to walk five miles again and the right side of my heart has significantly reduced in size. It’s absolutely incredible.

I feel like I did a couple of years ago now, and I’m just so grateful.

Simply being able to walk in the countryside feels like the greatest gift, and there aren’t enough words to describe how wonderful my PH team are.

They have helped to restore my trust in the NHS as if it hadn’t been for that consultant being on shift at my local hospital on that Monday morning, I’m not sure what would have happened to me.

I think part of the problem was that I was such a complex case, seen by different hospitals for different disease areas. I know doctors can’t be experts in all areas, but there should be some sort of awareness of how conditions overlap.

I have since been told that one in 20 patients with portal vein hypertension - which I have had for years as a complication of liver disease - go on to have pulmonary hypertension.

This shows the importance of all liver and heart specialists understanding it.

I survived the process of being misdiagnosed and got the right treatment in the end, but other people might not be so fortunate.

This shouldn’t be left to luck.

“Simply being able to walk in the countryside feels like the greatest gift”

EMPHASIS ISSUE 2 / 2024 _PAGE 43

Connect online with others affected by PH

Our private Facebook groups are a valuable source of support and advice from people who truly understand. They are safe spaces to talk to other people with lived experiences of pulmonary hypertension.

You need to have a Facebook profile in order to join these groups. Sign up at www.facebook.com. It’s free and easy!

We have dedicated groups for patients, carers, and loved ones too.

Scan the code to access the groups, or visit phauk.org/SafeSpaces

y a d My

e t a l p on a

Chermaine Kwant is a registered dietician who lived with pulmonary hypertension before undergoing a lung transplant. She shares what a recent day of food looked like for her – and how you can recreate one of the meals for yourself…

WITH RE AL PHOTOS OF CHERMAIN'S FOOD

BREAKFAST Greek full fat yogurt with cashews, Brazil nuts, raspberries, and banana chips.

The banana chips are quite sweet, but I add them for the taste.

Food for.. thought.

OUR REGULAR NUTRITION FEATURE TO HELP YOU MAKE THE MOST OF LIFE

DINNER

I made a curry. This curry is very green, thanks to the vegetables and herbs I used.

These herbs are cooling, even on hot days, and if you like, you can further flavour the dish with something like red peppers. Because this curry is full of herbs, you don’t need much salt or other unhealthy flavour enhancers. By blending the vegetables into the sauce, you also get a lot of vegetables without noticing it. This curry is delicious with rice but can also be eaten on its own. For a vegetarian and vegan version, you can use tempeh, and it's also very tasty with shrimp.

MY CURRY RECIPE (serves two people):

• Clean a green bell pepper, 2 white onions, 1 red onion,

and 1 clove of garlic. Put them in a blender with a generous bunch of cilantro, or you can use flat-leaf parsley if you prefer. If blending is difficult, you can use a bit of coconut milk (you'll use the rest of the can later).

• Once everything is finely blended, put it in a pan with some oil or butter and cook on low heat. This way, all the flavours are released without burning the herbs and vegetables.

LUNCH I had a salad with roasted chicken breast. I didn't use any salt but added plenty of Parmesan cheese (which naturally contains salt, but this flavour enhancer is also rich in proteins). I made this salad with lettuce and a dressing of mayonnaise with some chopped pickles. I also had a chopped bell pepper on the side and for dessert, a beschuit (a typical Dutch product, similar to what you may know as rusk) with lots of butter and extra dark chocolate sprinkles.

• Meanwhile, cut 2 chicken breasts into small cubes

and add them to the pan, briefly cook everything together and add the rest of the coconut milk. Lower the heat when the sauce starts to simmer gently.

This way, the chicken cooks slowly and doesn’t dry out.

• Check if the chicken is cooked through, taste the sauce, and season with some lemon (zest or juice) and a little brown sugar if necessary.

Find out more about Chermaine and her experiences of PH at phauk.org/MeetChermaine EMPHASIS ISSUE 2 / 2024 _PAGE 45

Food for. thought..

Protein is one of the key components of a healthy diet, as Shaun Clayton, a Certified Nutritionist and Operations and Finance Director at the PHA UK, explains…

WHAT YOU NEED TO KNOW ABOUT PROTEIN

W

hen it comes to managing our weight and overseeing conditions like pulmonary hypertension (PH), our diet plays a pivotal role. Among the nutrients we consume, protein stands out for its profound impact on our health.

This article explores the significance of protein in our diet, how it aids in weight management, supports individuals with PH, and the role of other dietary components such as carbohydrates, dietary fats, and supplements like creatine.

UNDERSTANDING THE ROLE OF PROTEIN Protein, a key building block of life, is essential for repairing cells, making new ones, and supporting muscle health.

Its importance in weight management is twofold: protein-rich foods keep us feeling fuller for longer, reducing the temptation to snack, and they increase our metabolic rate, meaning our bodies burn energy more efficiently.

For individuals with pulmonary hypertension, maintaining optimal nutrition is crucial. Protein can support muscle strength and energy

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levels, aspects particularly important for those with PH, where fatigue and muscle weakness are common symptoms.

THE BEST SOURCES OF PROTEIN While protein can be found in a variety of foods, natural sources are often recommended for their additional nutritional benefits.

Lean meats, fish, eggs, dairy products, legumes (peas, beans etc,), and nuts are excellentsourcesofhigh-qualityprotein.

Thesefoodsnotonlyprovideproteinbut also essential vitamins and minerals.

However, there are situations where eating enough protein through food alone can be challenging, particularly for individuals managing weight or health conditions like PH. This is where protein shakes and supplements can be a useful tool. They offer a convenient and efficient way to ensure adequate protein intake.

PROTEIN INTAKE: WHAT SHOULD YOU AIM FOR? This is a very individual question depending on your goals. For most individuals with PH, muscle maintenance and general wellbeing are the aims. The rule of thumb when it comes to this is to use a simple equation to work out your daily requirement of protein. That equation is, take your bodyweight in kilograms and using a calculator, times that number by 1.2 and press equals – this will give you a number. That number is your daily requirement of protein in grams.

Whilst consuming this would be optimal, making efforts to get as close to it as possible for many is very good and all you need to do.

My advice is to try to consume some protein with each meal. Eggs in the morning, chicken for lunch, and salmon for dinner etc.

If you have a question about food or nutrition email nutrition@phauk.org and Shaun will be happy to help BEYOND PROTEIN: A BALANCED DIET

While protein is vital, a balanced diet also includes carbohydrates and dietary fats - each playing unique roles in our health. Carbohydrates are our main energy source, crucial for fuelling daily activities and exercise routines.

Whole grains, fruits, and vegetables are excellent carbohydrate sources, offering fibre, vitamins, and minerals.

Dietary fats are equally important, especially unsaturated fats found in olive oil, nuts, and fish, supporting heart health and reducing inflammation. For those with PH, a diet low in saturated fat and salt can help manage symptoms and improve overall well-being.

CONC LUSION

SUPPLEMENTING WITH CREATINE

cial role Protein plays a cru ting ement and suppor in weight manag like s on iti nd co th heal individuals with g sin natural rtension. By choo pulmonar y hype ting wisely, n and supplemen sources of protei alth goals he r ei pport th individuals can su diet that ever, a balanced effectively. How y fats, rates and health includes carbohyd ine, at cre e lements lik along with supp ng ei lb el w nce can further enha e. and quality of lif

Beyond protein supplements, creatine is another supplement gaining attention for its health benefits, including improving exercise performance and muscle strength.

This can be particularly beneficial for weight management and supporting individuals with PH in maintaining muscle strength and function.

REMEMBER, when making significant changes to your diet or exercise regime, especially when managing a condition like PH, consulting with healthcare professionals is essential. They can provide tailored advice that considers your specific health needs and circumstances.

EMPHASIS ISSUE 2 / 2024 _PAGE 47

“There are incredible

s e c n e i r e p x e life can bring out there that

” y a d h c a e y o you j

"Approaching a milestone birthday is a good time to reflect and as my 40th birthday looms, a part of me is dreading entering a new decade, but another part of me is feeling extremely grateful for getting to where I am today.

I was diagnosed with idiopathic pulmonary arterial hypertension two days after my 13th birthday, back in 1997.

After over three years of medical investigations following a series of blackouts, it was a relief to finally get some answers.

PH wasn’t very well known back then and when I was diagnosed the outlook was bleak. My parents were told by the doctors I probably wouldn’t live to see my 21st

PAGE 48_ EMPHASIS ISSUE 2 / 2024

birthday – a prognosis that thankfully my parents only told me about after I turned 21.

My parents shouldered most of the burden of my condition. They wanted me to know it was to be taken seriously, but they didn’t want me to know how serious it was. My mum wanted me to put my focus into school, which is what I did, making sure that I kept up with classwork around all my medical appointments.

I’ve never wanted PH to define me, and ever since I was young, I was desperate to keep up with what my friends were doing – whether that be going to university, partying or travelling.

I remember years of having dreadful side effects from medication, and at the end of a night out my friends would sit with me while I had my feet in a freezing cold bath to bring down the swelling after dancing all night.

My mum used to keep a damp tea towel in the freezer to put on my swollen red legs after I’d been on my feet all day at my weekend job. I look back at these memories fondly, thinking of the people who enabled me to live my life

Me and my husband in Western Australia cycling around Rottnest Island

It’s been 27 years since Vicki Macdonald was diagnosed with PAH, and as she prepares to celebrate her 40th birthday, she looks back on her journey...

Me and my dog Lexi

to the absolute fullest.

As part of my university course, I completed a one-year work placement in London. Living in the city expanded my horizons and with money finally in my bank account, I went backpacking with friends to South East Asia for six weeks. My mum was nervous about me being so far away for so long, especially considering this was in 2006, when you had to go to an internet café to send an email back home. But I was determined to go, and this trip would become the start of my love affair with travel.

After I finished university, I moved to London permanently where I started a job as a Management Consultant and was flat sharing with a friend.

This was a huge period of change for me, as I also transitioned to a new PH hospital and they wanted to change my medication.

Me on my 13th birthday.

I was diagnosed with PH two days after this picture was taken.

Me and my husband in Vietnam, Halong Bay

After being on the same medication for ten years, my side effects had grown worse as time had gone on. I was now working full time and commuting on the tube, my days were long, and I was keen to find a treatment that suited my new lifestyle.

It took time, but it’s important to work with your medical team to keep pushing for a solution that works for you. It’s important to know what you can tolerate, but also, you need to be able to live your life – so a balance must be struck.

It was in London 16 years ago that I met my now husband. We’ve been married for 11 years, and I cannot imagine my life without him by my side.

I don’t remember having the conversation with him about my health condition, but knowing me, I probably dropped it in casually and moved the topic onto something else.

Even now I don’t like anyone coming with me to my hospital appointments, because it’s a vulnerable part of me that I don’t like people seeing.

Maybe that’s why I ran into trouble with my condition six years ago. I was going through a stressful time at work, working in the head office of a high street retailer in a senior finance position, and I stupidly ran up the escalator at an underground station to make the next train. I found myself collapsing at the ticket barrier.

“Travelling has been a passion of mine since I went backpacking in my early twenties ” After it happened, I was so upset and angry. I’d spent too many years putting pressure on myself, and I couldn’t remember a time where I’d prioritised my health. Looking back, it was the wake up call I needed.

I quit my job immediately and took some time off work to focus on my own physical and mental wellbeing. It was a scary time. I wasn’t sure if my condition was worsening, and questions would whirl around my head. Would I ever be able to work again? How would I pay the mortgage? Would I be able to travel?

Even now I get anxious at tube stations and on the tube, as it brings back these memories.

Travelling has been a passion of mine since I went backpacking in my early twenties, and since then I’ve travelled to almost 40 countries.

My husband and I took three months off work in our mid-thirties to travel around Australia and South East Asia and we had the time of our lives. Every year I plan my leave days from work around my travel bucket list– which is harder since we got a dog, because I never want to leave her. I look forward to the days where dogs can travel with you on the plane!

Looking back, I don’t think there is anything I would change other than putting my health first earlier in my life, rather than waiting for health episodes to happen.

Sometimes I feel sad that having children hasn’t been an option for me, which a lot of other people with PH will sympathise with. But there are other incredible life experiences out there that can bring you joy each day.”

EMPHASIS ISSUE 2 / 2024 _PAGE 49

Y N N U S S N O S SEA & PH Raya Mynot h through 23 sum as lived m pulmonary hy ers with pe – so she’s learn rtension ed a or two about c thing op with hot weat ing her…

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As nice as summer is, with the sunshine and holidays, it definitely is something that can be a struggle for people with PH. With the hot weather and humidity, it can make PH symptoms worse.

Although we definitely don’t have a ‘big summer’ in the UK the hot weather does make things a little harder. I find during this time I become more tired, get more headaches, and sometimes the humidity can cause my breathing to get harder.

So, I thought I’d share with you how I make summer easier when living with PH! Most importantly you need to make sure you’re staying hydrated. I’m not the best drinker and don’t drink as much as I should, but in the summer I’m definitely more mindful.

I don’t really like water, so I make sure I have my favourite drinks in stock with the hot weather. I like to drink Coke and Lucozade (not the energy version) especially. These also help to keep my sugar levels up too, which I’ve found helps lessen my dizzy spells.

Another thing I love having in the summer is a cool mat. These are actually made for pets but I have a big one that sits under the sheet on my bed and helps to stop me getting so hot at night. These are so useful and pretty inexpensive too. I also like using it if we are out and I’m in my wheelchair, as it just goes over the back and keeps me cool when I sit back in my chair.

We are really lucky that we are able to keep our house cool, as we live right on the corner of flats on the ground floor, surrounded by trees, so our house is actually never in direct sunlight.

Raya's column

S

‘Although we definitely don’t have a ‘big summer’ in the UK the hot weather does make things a little harder.’

My room is also round the back and is the coolest room in the house which works out so well. Along with this I always make sure to keep my door shut, and curtains closed as this also helps to rooms shaded and cool.

As silly as this sounds, we also keep the windows closed during the hottest time of day, because you’re just letting hot air in.

We open the windows in the mornings and evenings when it’s cooler.

During the hot weather, I also try and keep plans and going out to a minimum as I don’t want to exert myself too much.

Staying out in the sun is just not for me!

I love doing some shopping and making full use of the shops’ air conditioning.

I hope you all have an amazing summer. Make sure you keep cool and stay hydrated!

EMPHASIS ISSUE 2 / 2024 _PAGE 51

Don’t miss out on what’s yours!

NEW! Help to make your PIP application Applying for Personal Independence Payments (PIP) can be stressful, so Turn2us have launched a new free tool to support you through the process. It’s completely confidential, and it isn’t attached to the DWP. Walk through the PIP application process step by step Check what PIP award you are likely to get Get personalised tips on how to fill out your application form Find extra help you can get based on your PIP award Sign up to receive reminders and use checklists to track your progress

Try it now at bit.ly/PIPhelper or scan the code.

These other free tools will help you discover what support may be available to you, based upon your personal circumstances…

Benefits Calculator phauk.org/BenefitsCalculator

Grants Search phauk.org/GrantsSearch

Tools provided by Turn2Us www.turn2us.org.uk

E T A D E !

H K T U E Y V SA PH DA R O F

PH Y A D UK 4 2 0 2

R E B M E V NO

Y A D I FR

1

ST

Our annual awareness day puts this rare condition under the spotlight, and this year, we’ll be asking you to GO PURPLE FOR PH! We’re busy making plans, so for now, please pop the date in your diary.

Keep an eye on our social media channels, or scan the code above to sign up for our e-newsletter, and be among the first to find out how you can get involved…

Psychotherapist Sophie Papageorgis lives with pulmonary hypertension and is passionate about helping others with the condition. In her latest column, she explores the link between sleep and mental wellbeing – and explains what you can do if PH is scuppering your slumber.

Let's talk

sleep...

Ah, a good night’s sleep. Something which you’d hope would be natural and simple, is often so difficult to achieve!

It feels as though nowadays we all have such busy lives and are always thinking of the next thing on the to-do list, or worrying about something that’s coming up. Throw in some anxiety around living life with pulmonary hypertension, managing symptoms, and being physically exhausted, and it’s often a recipe for a poor night.

Sleep is vital for physical and mental health recovery. Not being allowed to sleep is a form of torture. I’m sure we all know too well how horrible it is in the middle of the night, watching the time barely move, thinking “If I fall asleep

PAGE 54_ EMPHASIS ISSUE 2 / 2024

now, I can get four hours in… two hours in…” and so on.

Lack of sleep has a big negative impact on mood. It can cause depression, heighten anxiety, increase irritability, and make life feel more overwhelming. It can lead us to want to self-medicate, which is a bit of a vicious cycle. Alcohol, for example, may help us fall asleep – but it will make us wake up earlier and increase anxiety.

So, we can agree that sleep is super important, but sometimes it is elusive.

There are some things that we can try to help get a better night’s sleep. I’m not a

fan of the expression ‘sleep hygiene’, but that’s what we’re aiming for.

Here are some ideas…

Keep your bedtime routine consistent.

If you can have some time away from your phone or screens that may help (though playing the colouring app on my phone often sends me to sleep – we’re all different!) Avoid eating and drinking, especially caffeine, too late, and try to go to bed and get up around the same time each day. These things aren’t always possible, but if you can keep them as a framework then it can be a useful place to start.

Avoid napping during the day.

This is often easier said than done with a chronic condition like PH, but napping can take the edge off your tiredness at night.

Let’s all be kind to ourselves on days when our energy levels are particularly low Do something relaxing before bed.

TEARING UP THE RULEBOOK

Practice some mindfulness or take a relaxing bath, read a sleepy book (no murder mysteries!), play some calming music… anything that helps you to unwind and take away some of the stress of the day. If you’re into breathing exercises, then doing some deep slow breathing can help calm your body (although my scepticism about breathing exercises and lung conditions is rearing its head here).

Here’s an uninvited insight into my mind now…

Lots of the common sleep hygiene ‘rules’ tell you to get up if you can’t sleep, do something boring until you’re sleepy, and then go back to bed. This has never worked for me, so I’ve come up with these alternatives over the years that have proved more fruitful:

Sort out those worries.

Body mapping: Lay in bed and list all your body parts from head to foot. Personally, I don’t do it in a ‘mindfulness body scan type way’, it’s just something boring to occupy the mind. This also works in terms of playing the alphabet game (food and drink…Apple, Bread, Carrots…), and counting (aim to get to 1000 and see how you get on).

If you can empty your head of some of your worries before bed (quite a bit before bed, so you have time to unwind after), this will help with getting off to sleep.

Writing worries down is a pretty effective way of getting them out. If you have a worry monster, they can keep them safe for you overnight! It can be worth keeping a pen and paper by your bed, because if you wake up early overthinking, you can write down those thoughts/outstanding tasks to come back to later. At 5am, the thoughts and concerns we have are often a whole lot bigger than they need to be, and reminding yourself about this can help with recognising that they are just feelings, not facts.

Listen to a bedtime story (seriously!)

Personally, the Calm app (other apps are available) has been a life-saver for me.

It’s got some great boring stories, some fiction stories, people reading the shipping forecast, music, sleep routines, mindfulness, and more. If your mind wanders, you can gently pull it back to listening to the app, and getting sleepy.

Yawning: I don’t know if this is a universal thing, but fake yawning quickly makes me genuinely yawn, and the more I yawn, the more sleepy I get.

Trying to stay awake: This one is normally my winner. I try really hard to stay awake. I lay in bed all comfy and wide awake and tell myself ‘I am not going to sleep tonight, and if I am still awake in an hour then I will get up and give up’. My mum always said I liked to be awkward… perhaps she had a point.

In summary: We work hard managing PH every day, and this means that we’re more likely to be knackered and in need of rest. Let’s all be kind to ourselves on days when the energy levels are particularly low, and accept that sometimes the sleep schedule is going to go out the window.

Sweet dreams!

Visit www.bit.ly/SophiesExperiences to read about Sophie’s own experiences of PH. Look out for more of her advice in the next issue of this magazine.

EMPHASIS ISSUE 2 / 2024 _PAGE 55

SOTATERCEPT: What happens next?

Lots of people are talking about the first-in-class PH drug sotatercept, which has recently been approved for use in America. Here, PHA UK Chair Dr Iain Armstrong explains what happens next – and what will be considered when it comes to making decisions for the UK.

S

otatercept is what’s known as ‘first-in-class’, and what makes it so exciting is that it’s treating part of the problem that’s not been treated before. It potentially is very important, but is it more important that the other PH drugs? Time will tell. However, it’s the first new drug we’ve had for many years, so that’s the reason we’re talking about it so much.

It’s also a hot topic because it has recently been given a licence by the Federal Drug Agency, which means it can be used in America if patients fit the criteria and insurance companies will pay for it.

So where are we at in this part of the world? Sotatercept is yet to gain a European licence, but we think that is likely to happen before the end of 2024.

There are key differences between Europe, the UK, and America though.

Once sotatercept has its European licence it will then need to get a UK licence, because we are no longer part of the European Union.

It’s important to remember that our

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health system is different to America’s, so obtaining a licence is only part of the issue. The next stage will be getting the drug commissioned by the NHS, and the challenge here is likely to be the cost. Because PH is a rare disease, drugs are very expensive.

Once it’s been licenced, the National Institute for Clinical Excellence (NICE) will put sotatercept through a process to decide whether the benefit of the drug is worth the cost to the NHS. As a patient organisation, the PHA UK will be very much involved in this process – something we have done for different drugs over the last couple of decades. We can’t present clinical data, but we can present the patient narrative, and the stories that will help commissioners understand what it’s like to be impacted by PH. It is this involvement that we hope will persuade them that the benefits will be worth the cost.

Without a doubt, the biggest challenge in getting access to this drug will be its price. We have some idea how much it costs in different

parts of the world, but drugs are sold at different prices in different countries. We need to be prepared for this challenge.

In summary, I think we can be very positive. It is very likely that sotatercept will get a UK licence, and this is a new drug that works in a different way by targeting the root cause of the disease.

However, we do need to be prepared for commissioning challenges. Here at the PHA UK we put every effort into any drug that we think has a place in the world of PH, and as Chair of this organisation I can assure you we will fight on your behalf.

Thanks to you sharing your voices in our surveys, we have already built a strong dossier of evidence of the need for drugs that ease the burden of PH. Please continue to get engaged with our research, as it really does make a difference when it comes to securing access to treatments. We’re a small disease area, and we’re so much stronger together.

What is sotatercept and what makes it different?

Sotatercept is a totally new type of drug for pulmonary arterial hypertension. There are already a number of existing drugs that are known as ‘vasodilators’ – which work by opening up some of the arteries that have narrowed or closed down. But these drugs are treating the symptoms of PH, rather than what’s causing the disease.

Sotatercept arose from some of the work done in genetic forms of pulmonary arterial hypertension, and the drug works by changing the expression of proteins that underly them.

So, rather than just opening up vessels, it works more directly on the underlying ‘problem proteins’ that are causing the disease in the first place. It’s the first time a PH drug is getting to the root cause of the problem, rather than treating the consequences of it.

Although it was developed by studying genetic forms of PAH, trials have shown that sotatercept can be used in non-genetic forms of PAH too. It is designed to be taken alongside other therapies, via an injection administered at home every few weeks.

Scan this code to watch a video of Iain explaining more about the NICE drug review process.

EMPHASIS ISSUE 2 / 2024 _PAGE 57

Behind the

JOB TITLE

i l A m a S Meet Sam Ali, a Clinical Nurse Specialist in Pulmonary Hypertension at Royal Papworth Hospital in Cambridge.

Did you always want to be a nurse?

Yes, ever since being a little girl. It runs in our family, so there was never a doubt! I came to Royal Papworth Hospital in 2006 and spent a six-month secondment in the pulmonary hypertension unit – where I’ve been ever since.

You must have seen a lot of changes in the 17 years you’ve been working in PH. Can you tell us about some of them?

Lots of the medications have changed, and we’ve got newer, more up-to-date pumps for administering IV medication.

A lot more has been learned about disease

PAGE 58_ EMPHASIS ISSUE 2 / 2024

progression and of course, we’ve had balloon angioplasty treatment become available here at Papworth too.* Patients are looked at much more holistically now, with a real emphasis on quality of life, and I think that’s very important.

Plus, there are also many more research trials happening. Patients aren’t always aware of what goes on behind the scenes in that respect, so I try and do a good job of keeping them informed.

What does a typical day at work look like for you?

(If there is such a thing!)

As nurses here we spend a week on the wards, a week doing clinics, and a week doing administration, rotating between the three. As well as seeing patients in the hospital I do a lot of telephone support too, and patient contact is definitely my favourite part of the job.

“It’s important to understand that as specialist nurses, we are here to help.

If you have any questions, queries or concerns, please contact the nurses at your centre.

No question is a silly question, so don’t be frightened to ask it.

And if we don’t know the answer, we’ll find someone who does!

Each specialist centre has a multidisciplinary team made up of nurses, consultants, pharmacists and more, and we are all here for you.”

What’s most rewarding about your work?

I find we get to know our patients very well and it’s so nice to hear them say they are feeling better from the treatment we put them on and the care that we give. It might be that they’ve been able to walk to the shop for the first time in a long time or make it up a flight of stairs… it’s really rewarding to hear things like that and know that we’re making a difference.

I'm proud to be a specialist nurse, looking after such a special group of patients. I find both them and my colleagues really inspiring.

Finally, how do you relax when you’re not being a nurse?

I enjoy family time with my husband and my two children. We have a dog now, a black labrador called Oscar, who’s only one, so we spend a lot of time training and walking him.

We try and do lots together as a family.

* Royal Papworth Hospital carried out the first balloon pulmonary angioplasty (BPA) in 2015 and the hospital was then commissioned by the NHS to provide the service across the UK from 2018. The pioneering procedure is now a treatment option for patients with chronic thromboembolic pulmonary hypertension (CTEPH) who are unsuitable for surgery.

EMPHASIS ISSUE 2 / 2024 _PAGE 59

KIDS

CORNER

r e m m Su e r u t a n X o g bin

Our regular space for children with PH 1.

4.

7.

2.

3.

6.

5.

8.

G N I K C A N S R E M M U S R SUPE

just 3 nanas – made with ba en oz fr t nu d an t frui uity and refreshing Tr y making these fr ays. lengthw ze e c li s d n ee a y and fr ananas Peel 2 b n a baking tra til just solid. o n Lay flat st an hour or u a le t f or a

Spread each half w peanut butter (sm ith 1 tbsp ooth or crunchy – the choice is yo urs!)

2

1

Ask an adult to help you with the PAGE 60_ EMPHASIS ISSUE 1 / 2024 slicing

☺

ts! steps and 3 ingredien

Slice some strawberries and lay out on top of the peanut butter.

3

Enjoy!

* Images and recipe courtesy of tesco.com

into nature is Getting outside and hen the sun is great – especially w 9. of these things shining! How many ily m fa xt ne ur can you spot on yo take it with you, walk? Cut this out, 9. Squirrel as you go! dog 7. Fluffy cloud 8. Bird and cross them of f wn Bro 6. f lea een Gr 5. isy 3. Pink flower 4. Da 1. Butterfly 2. Bumble bee

Y M F O W E F A

. . .

S G N I H T E T I R FAVOU re has PH Eight-year-old Abbie Hampshi York. and lives with her family neargs!

She has lots of favourite thin My favourite colour…

My favourite character…

I love Disney I love pink and princesses but my purple colours. favourite character at I wear lots of pink the moment is Asha and purple dresse from Wish. I love her They are special s. because she made a colours because wish and a star came make me feel hathey down to help her. ppy.

She was really brave.

My favourite things about school…

I have so much fun at school and I love learning how to write and do maths. I went on my first school residential this year and I enjoyed paddling in the stream, eating marshmallows at the campfire, and dancing with my friends at disco before bedtime.

My favourite food…

My Daddy makes the best 'snotty' pasta (green pesto). It is bright green but tastes yummy! I like to sprinkle cheese on top too. I had my first afternoon tea, which was really good, too! I like to help chop veggies for meals and bake cupcakes for my family, but sometimes I need a bit of help as I get tired after a while and need a rest.

My favou rite place s…

My favou where myrite places to visit a visit them relatives live and re all the place where we. I love to see my Gwhere we go to my Nana go to a real fairy ranny in Silloth who take and Grandad in cafe, and visit P me to fee d the bigocklington fish.

More of Abbie's favourite things...

EMPHASIS ISSUE 2 / 2024 _PAGE 61

KIDS

CORNER

My favourite things to watch on TV…

MORE OF MY FAVOURITE THINGS...

the I like to watch Wish and sing toPaw tch wa to e lov o songs, but I als e because Patrol. My favourite Pup is Sky en I was she is pink and she can fly! Wh tched in hospital, earlier this year, I wa d lots of the Taylor Swift concert lots an wearing times. It helped me get used to my NIV mask.

My favou rite book to

read…

Oh, that's like lots of a tricky one becaus Kiki the K books. I like to reade

by Julia Dooala and Paper D for World B naldson. This year, olls as Prince ook Day, I dressed up which I lovss Poppy e d a s I got to wear a at school. ballet tutu

PAGE 62_ EMPHASIS ISSUE 2 / 2024

My favourite song to sing…

I love lots and lots of songs because love singing! I love to sing and danceI Taylor Swift songs, especially Shake It to I am part of the school choir and at theOff. moment we are learning to sing Try Everything by Shikira, a Matilda Me and My Lighthouse, and I know all the dley actions too! I have been practicing a because I am going to a Big Sing evelot nt with other local schools.

My favourite things to do when I visit hospital…

There are lots of things I like to do wh I always visit the GOSH shop for a treaen I go to GOSH. go to the Lagoon restaurant for my t and I like to like to say hello to the Peter Pan sta breakfast. I also Mummy takes me to Coram's Fields tue, and then my appointments for a play. I like the playground after sandpit best. We stay overnight in Weswings and the and last time we were there, I made ston House, a new friend.

S ’ O C CO UMN COL

arted being CoCo Praest, 10, st e was 5 years old. sh n e h w H P r fo d treate for Emphasis, she n m lu co d n co se r e In h r coding hobby… e h t u o b a ll a s u lls te

Me coding on Scratch

d things that you people, animals an do something. can programme to ScratchJr for Beginners can use t I prefer Scratch coding projects, bu share projects metimes if because you can’t ere are no bugs. So th t os m e ’t work five, th a bug the code won is e on ScratchJr. In year er th is ay on Scratch in sister Aika four, I first popular game to pl properly, but my tw e m When I was in year ga o I have vide ways figure it out. during ometry Dash. It’s a al r I hJ Ge d tc an ra Sc t ou ab learnt ps over pointy ts that we where a block jum ared lots of projec s and I made a sh to it g in computing lesson by mak er. y class. Scratch spikes and you win have made togeth u yo p, m ju maze game with m to r te pu ternet ds where you can the end. On a com you n using Scratch, in ad he iP is a fun app for ki W an on or ar os eb press the spac ations or vide rtant because code games, anim safety is very impo etry Dash om Ge . en . re ld sc or e w th e line, touch ith th ed to keep safe on 2013 in ne u and share them w la yo pa To rt be to Ro ks was made by can use bloc ecking with To get started you so I recommend ch y remixed an m e ar e ok er lo th ks w oc are a but no The bl n up before you sh ow code your sprites. gr a h. tc ra fit at’s cause they games on Sc ving a username th ha t, ec like jigsaw pieces be oj pr ing your or Science and ding there are ur real name, keep In The Week Juni yo t together. When co no n io n ct are a se that you ca cret, and if you sh magazine, there is se re d tu or w Na ss nine types of blocks pa rn the that has a Scratch rites. Sprites are oject, you could tu called Coding Club use to code your sp pr a e ad cently, I m u want to. project for kids. Re messages off if yo ng di Co from hool, a bus stop project a good week at sc ve by ha ng I di If en e th d e on the Club and change d a new I am allowed screen tim Coding an e rit sp nt re ffe di ratch or adding a with my and weekend so I often play Sc rd ha as w it st fir ve Scratch sister Aika background. At r video games. I lo it in the he ed ot lv so I t bu , ed complicat t for learning because it is grea y own project m e ad m so al I d. en coding and it the dinosaurs. about the end of of fun!

Scratch, is lots on t ec oj pr a g in ak After m out to make sure you need to test it

At the moment, s one of my hobbietch is coding on Scra. because it is fun

EMPHASIS ISSUE 2 / 2024 _PAGE 63

Learning from the best 4

“ The UK is still very much unrivalled in terms of medical expertise and research”

PAGE 66_ EMPHASIS ISSUE 2 / 2024

Chris Chew has left the sunny skies of Australia to learn from London as he takes up a temporary residency within the Royal Brompton Hospital. We caught up with the Senior Clinical Fellow in Interstitial Lung Disease and PH as he started his year of working with UK patients.

Q

Welcome to England, Chris!

What brought you over here?

A

“I arrived in April from Australia, where I was born and bred (my parents emigrated there from Malaysia).

I finished my respiratory and sleep training in Melbourne, and I’ve come here to the UK to learn from the best in both interstitial lung disease and pulmonary hypertension.

I’m working across these two areas at the Royal Brompton, as a Senior Clinical Fellow – which means as a doctor, having completed my basic training in respiratory medicine, I’m now working at a higher and more specialised level.

This role is enabling me to get more experience in managing patients in this field, learning more about clinical pathways and treatment and management.

I’ve done almost all my clinical training in Melbourne, and I wanted an opportunity to travel and learn from different parts of the world. The UK is still very much unrivalled in terms of medical expertise and research, and there’s a long line of Australian Fellows who have come to the Royal Brompton Hospital over the years.

I’ve come to realise that it’s a very special and protected centre of excellence, and the concentration of patients and expertise and research is certainly like nothing I’ve ever seen before.”

Q A

You’re working across both interstitial lung disease and PH. Can you explain how the two are linked?

“Interstitial lung diseases (also known as ILDs) are a group of quite rare and very varied conditions, which in most patients, can lead to shadows on their lungs and inflammation – including scarring (what’s called fibrosis).

The damage that ILD causes to the lungs can affect the vascular (arterial) bed as well, so a lot of our ILD patients live with pulmonary hypertension too. The prognosis in this group of patients isn’t great, and there are limited treatment options at present.

My job over here is predominantly patient-facing, working with both inpatients and outpatients – so those who are so sick they’ve been admitted to hospital, and those visiting for clinics too.

I really like clinical medicine; this patient-facing side of things, and talking to people, so I’m wanting to learn how to do that better. That’s why I’ve chosen to become a Clinical Fellow.”

Q

What are you enjoying most about your time with the services here?

A

“One of the most rewarding things about being here so far has been the opportunity to work with a really special patient group.

For a number of years now, my clinical interests have really moved toward patients with some of the most severe and incurable chronic diseases, like PH and ILD. These people show the depth of human resilience and spirit, and it’s really rewarding to play a small part in helping to make their lives a little bit better.

It’s also been good to get a better understanding of the NHS here. I really admire the principles of the NHS; the idea that medical care should be accessible to everyone at the point of contact. I’ve not been over here long, but what’s really struck me is how everyone who works in the NHS is purely motivated by that ideal. Everyone I’ve worked with has focused very much on this and doing their best for patients.”

Q

We certainly do value our NHS. How does the PH service in Australia differ from the PH service in the UK?

A

“The big difference is that Australia is much smaller as a country in terms of population. but a lot more spread out. I still find it mind-boggling that you can catch a train from London to Paris in less than two hours!

Because of the distances in Australia, and lower patient numbers, it’s very hard to have dedicated, large pulmonary hypertension services there. Working in London is helping me see what a large, well-functioning PH service is like.

There are what’s known as ‘pulmonary hypertension centres of excellence’ in Australia, and I did a lot of my training at The Alfred Hospital in Melbourne, which has a really good respiratory unit. They run a centralised PH service there, which includes transplant services, but getting there can be a problem for patients.

In Victoria, the state in which Melbourne sits, you can drive for seven or eight hours and still be in the same state. Meeting the needs of patients in such a big and widely spread area can be a challenge.

I’ve only been here in the UK for a few months so I’m still very much getting to know London, the Royal Brompton Hospital, and the NHS. There’s still a lot more to learn, and I’m looking forward to taking some of these lessons back to Australia.”

Hear from Chris again in the next issue of this magazine, as he reflects on his first six months of working in the UK’s PH service.

EMPHASIS ISSUE 2 / 2024 _PAGE 67

We provide support in the ways that work for YOU. If you like to talk…

Our Listening Line support service gives you dedicated time with a PH professional to talk through any worries or concerns you have relating to your emotional or mental wellbeing.

Speaking to someone who already understands PH means you don’t have to explain the condition first, and this service is available to family and friends too.

Find out more or book a telephone chat by emailing listeningline@phauk.org or visiting www.bit.ly/ListeningLine

“Paul’s support lifted me. He was so understanding and supportive, and it was helpful to chat with someone who knows about this disease.”

PHA UK member

il us at

E

m

y an

y time •

time •

an

a Em

If you prefer support by email…

Our e-support service is as valuable as a helpline, but delivered via email instead. We can help with ongoing emails to support you through a difficult time, or with one-off enquiries or problem-solving.

Contact us at support@phauk.org at any time and we’ll get back to you within two working days.

“I'm so grateful to have this chance to email as I'm hearing impaired”

E-support service user

Please note: These are not formal counselling services and are not designed to replace clinical advice from your specialist centre team.

ail us at

Log on for support and information www.phauk.org ✓ Information about PH – including tests, diagnosis and treatment

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Simply tap on this button at the bottom of each web page to access all of the assistive features.

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