AUTUMN/WINTER 2022
“I have accepted that it’s part of me” The magazine for members of the PHA UK www.phauk.org
Cover star Sophie on life with a Hickman line
PH DAY UK 2 202
#HearOurVoices
Plus...
Our mission for good nutrition, research news, real-life stories, and much more…
Looking back on PH Day UK
Exercising with pulmonary hypertension Your questions answered
Don't miss out on what's yours As the cost of living continues to rise, find out what financial support you may be entitled to.
Benefits Calculator and Grants Search tools now available at www.phauk.org Find out if you could access welfare benefits, charitable grants and other support that you might be missing out on. In association with Turn2Us www.turn2us.org.uk
Hello Welcome to the last Emphasis issue of 2022. I really hope this year has been good to you.
We
have included two special supplements with this issue, of equal importance. ‘A moment in history’ is a snapshot of your experiences from the COVID-19 pandemic, which has dominated so much of the last few years. This supplement is part of a wider project which saw us interview over 30 PHA UK members, some on film. I urge you to visit our new website, www.mypandemic.co.uk, to read personal stories, watch powerful videos, and discover people’s memories and more in the online exhibition. We are hugely grateful to everyone who has been part A MOMENT of this unique in history project and we will be amplifying its reach throughout the coming year and beyond. This issue, we are asking you a very important question: What is it like to live PH, today? By completing the survey enclosed with this magazine, you will be helping to influence so much over the next few years, and its importance simply cannot be overstated. We’re Experiencing the COVID-19 pandemic: Voices from the UK's pulmonary hypertension community
Published with the PHA
UK's member magazine,
Emphasis, in December
2022
asking for just ten minutes of your time to help impact years of support for our PH community. Find out more on page 14. Finally, I’d like to say a huge thank you to everyone who supported PH Day UK in November. We were hugely impressed by the efforts people went to in order to raise awareness. Many of you kindly sponsored me for what was originally to be the ‘Swim Serpentine’ event, a one-mile open water swim in London’s Hyde Park. Unfortunately, this was cancelled due to preparations for the funeral of HM Queen Elizabeth. I completed the mile in my local pool on the morning of PH Day UK instead, and it was an honour to join so many of our members ‘going the extra mile’ on the same day. You can find out more about what people got up to on page 28. I hope you enjoy this packed issue of Emphasis, and I wish you a peaceful Christmas and a positive New Year. Here’s to 2023, together.
THIS ISSUE, WE ARE ASKING YOU A VERY IMPORTANT QUESTION: WHAT IS IT LIKE TO LIVE WITH PH, TODAY?
Iain Armstrong Chair of the PHA UK media@phauk.org
AUTUMN/WINTER 2022 emphasis 3
28
13 KEEPING BUSY AT HOME THIS CHRISTMAS
WHAT A DAY!
Celebrating your support
PH DAY UK 2
Diane’s passion for crafting with PH
202
37 A MISSION FOR GOOD NUTRITION What we eat can have a huge impact on how we feel
CONTENTS AUTUMN/ WINTER 2022
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.
This magazine is printed on paper from sustainably managed sources
LIVING WITH PH
10
Navigating PH as a healthcare professional
12
A stroke of success
15 21
As an advanced nurse practitioner in cardiothoracic surgery, Tania found herself on the other side of the fence when she discovered she had PH
How member Catherine won two medals at the British Transplant Games, combining a love of swimming with a celebration of life
Exercising with PH
Your questions answered by an expert physiotherapist
Embracing life on a line
Sophie’s experiences of living with a Hickman line
42 HOPE, FAMILY, AND FAITH IN THE NHS
Julia looks back on 20 years since her diagnosis
50 WAITING FOR THE CALL How little Zac’s family cope with life on the transplant list
47
FASHION THAT FITS The clothing brand putting people with chronic health conditions first
REGULAR FEATURES
18
Kaylee’s column
45
Just for kids
52 56
How her family has helped her keep positive through PH Emily’s experiences of moving up to secondary school, and a quiz all about bodies!
Hello, my name is…
Meet PH professional Joe Newman
THE BEST OF THE REST
26
A life lived to the full
36
Research news
40
Fundraising Focus
The wonderful ways you’ve been raising money over the last few months
58
As Christine faces her first Christmas without her husband, she shares her reflections on behalf of their family Bringing you up-to-date with the latest developments in treating PH
Welcoming winter
How to prepare for the colder climate and seasonal challenges
Jumping for Julie
Stephen’s skydive in support of his wife
Get in touch: PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH office@phauk.org 01709 761450 @PULHAUK @PHA_UK @pha_uk_insta @PHA ORG UK No part of this magazine may be reproduced without the prior permission of the PHA UK.
UPFRONT Bringing you up-to-date with news from your charity
It’s been a busy few months of meetings and conferences in the PH world, and it’s been wonderful to see our contacts in the healthcare and research services face-to-face once more. The PHA UK helps organise the twice-yearly meetings of PH Professionals and PH Physicians groups in London, where representatives from all the centres come together to share best practice and discuss important issues.
PH professionals meeting
Finally connecting in-person again
We also sponsor the annual PH Research Forum, which took place in November and saw the UK’s top scientists gather to present their studies focused on pulmonary hypertension.
Our Chair Dr Iain Armstrong has flown the flag for PHA UK members at various events over the summer, including the British Heart Foundation and Medical Research Council Idiopathic PAH Cohort meeting, where he was invited as a special guest to deliver a presentation on the importance of engaging patients during research. He also presented at a national gathering of pulmonary hypertension doctors in Birmingham, and in August, he attended a prestigious event to celebrate the British Journal of Nursing award winners from the last two years. Iain was named 'Respiratory Nurse of the Year' in 2020 and the gathering enabled him to raise awareness of PH amongst other healthcare professionals from across the country.
Iain giving a presentation in Birmingham
AUTUMN/WINTER 2022 emphasis 6
>Prestigious award for Paul We’re delighted to share the news that Professor Paul Corris, a long-term associate and advisor to the PHA UK, has been given a Lifetime Achievement Award for his work in transplantation and thoracic surgery.
He was presented with the accolade by the European Respiratory Society, recognising a lifetime of excellence in these fields. Professor Corris’s career has seen him help hundreds of PH patients through his work with The Freeman Hospital in Newcastle, and this is a very well-deserved award. Congratulations from us all!
The cost-of-living crisis and PH With the cost of living continuing to rise, a PHA UK survey has set out to discover where the biggest challenges lay for people with pulmonary hypertension. The questionnaire, conducted during October and November, is helping us to understand if there are specific areas in which we might be able to help. We are currently analysing the results, so we can focus our support in the most effective way. Please check our website for a report into the findings of the survey and look out for news of what we’ll be doing to help. Thank you to everyone who told us how the cost-ofliving crisis is having an impact. We will do our very best to support you through this time.
More UPFRONT news overleaf AUTUMN/WINTER 2022 emphasis 7
UPFRONT
Bringing you up-to-date with news from your charity
>Addressing transplant through art Talented PHA UK member Kevin McAllister has produced a series of artworks to raise awareness of transplantation. Kevin, who has PH and works under the name ‘Wheesy Designs’, created the pieces as part of his fine art degree. He said: “I wanted my artwork to address transplantation, as an artist who will one day need a transplant. It will hopefully help to open a conversation around organ donation.” Three of his pieces are pictured here.
'Heart Lottery' AUTUMN/WINTER 2022 emphasis 8
'Untaught State'
'Lung Lottery'
Would you like to join our Feedback Forum?
Raising sunny smiles We’re proud to be supporting a scheme that sees cheering gift boxes posted to young people with chronic illness. young ess gift to a Giving a th a chronic illn person wi shine.co.uk sun sof www.boxe
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‘Boxes of Sunshine’ are aimed at those aged 11-16 and are sent through the post as a surprise. Each box contains 11 items, and mystery contents could include sweets, sunflower seeds, card games, bubble bath, and more.
The organisation is inviting parents, carers, relatives and friends to nominate someone who might benefit from a box.
The PHA UK has sponsored 20 of them, which have been reserved for youngsters with pulmonary hypertension. You can find out more, or nominate someone to receive a box, at www.boxesofsunshine.co.uk
Here at the PHA UK we are committed to providing high quality resources and support materials for people affected by pulmonary hypertension. Whether it’s a booklet, poster, video, or web page, we need to be sure that it meets the needs of the PH community. Your opinions matter, and by joining the PHA UK Feedback Forum you'll be helping us to produce the best support materials we can. If you'd be happy to review resources before they are launched, or offer feedback on ideas and initiatives, please sign up to be part of this panel – which has been hugely helpful over the last few months. We contact all forum members with opportunities via email, and it is up to you whether you respond. We appreciate that there can be bad days with PH, so we understand if you need to give some of our invitations a miss. We're looking for people with pulmonary hypertension, and their family / friends / carers too, to be part of this panel. Find out more or sign up at www.bit.ly/PHAUKFeedbackForum AUTUMN/WINTER 2022 emphasis 9
NAVIGATING PH AS A HEALTHCARE PROFESSIONAL As an advanced nurse practitioner in cardiothoracic surgery, Tania Riches found herself on the other side of the fence when she discovered she had pulmonary hypertension. Here, the 55-year-old shares her experiences of being a patient with a rare disease, and explains why she believes the NHS has ‘a lot to learn’ from the UK’s specialist PH service…
I
first noticed increased shortness of breath during moderate exercise. I found it increasingly difficult to maintain the level of activity I had previously managed comfortably. Over the next 12-18 months this worsened to a point where I found myself modifying the routes I would take, to avoid stairs or inclines. Eventually people started to comment on my shortness of breath. Embarrassingly, even a very frail and sick cardiac patient I was taking to another department said, “oh dear love, you’re more out of breath then me”. It started to affect my private life as well as my working life.
AUTUMN/WINTER 2022 emphasis 10
I am extremely fortunate to live in Cornwall and I would normally take full advantage of everything the county has to offer, with its beautiful beaches and walks. But I found I was becoming very tired and fatigued and once again started to avoid such activities. Unfortunately for me, this all happened during the pandemic, and consequently, trying to access the GP service was nearly impossible. I also felt like they didn’t take me seriously and thought that I was just slightly overweight and unfit – ‘nothing that a bit of regular exercise wouldn’t put right’.
As a patient I have felt fully supported and comforted by all those I have had contact with
Eventually I managed to get them to do an echocardiogram (the results of which were normal) and I had to push for pulmonary function tests, which did show some restrictive issues. Once again things seemed to come to a halt, and only by being assertive and persistent was I able to move things forward. Following lots of investigations, and by understanding how the system works - and my own clinical knowledge - after 15 long months I finally got a diagnosis. By this point, June 2022, I was finding even getting dressed in the morning difficult. I am not a shy person and I have worked in the NHS for more than 30 years. I kept thinking to myself, ‘if I found this process so hard to navigate, how would someone who was less persistent and knowledgeable manage? And more importantly, how long would it take to reach a diagnosis?’ My diagnosis came as a shock, but it was also a relief to finally know what was happening to me. I knew that this was a very serious condition which would ultimately impact on my quality and length of life. My main concerns were being there for my children, worrying if I would ever become a grandmother, and wondering whether I would have to give up work.
Even as a healthcare professional I did the worst possible thing and searched the internet on the subject. My advice is do not Google! Talk to your specialist team, who will give you the most up-to-date, research-based information. A lot of the information online is out of date and obsolete. I now know that so much has changed with the treatment and management over the last five years, resulting in transformative outcomes for patients. I can honestly say I started to see a difference within about three to four weeks of starting on treatment and I have steadily improved since. I have been very fortunate and not suffered any side effects from the drugs, however, I am fully aware that every patient reacts differently. I can now do everything I could do before (albeit not necessarily at the same speed) and I am very optimistic for the future. I have been amazed by the specialist teams and the service they offer. As a patient and a healthcare professional, I believe that the specialist PH service is one that the NHS could learn a lot from. I have been impressed by the co-ordination and multi-disciplinary team working, not only between various specialists, but also between NHS Trusts. As a patient I have felt fully supported and comforted by all those I have had contact with. Everything is geared towards supporting me as an individual. Reflecting on the last few months, I feel strongly that awareness and understanding of this condition at primary care level needs to be raised. Once referred to the relevant specialist, reaching early diagnosis can be achieved. One of the most time-limiting issues revolves around access to investigations, as limited resources such as computerised tomography (CT) scans can result in delays. If I was to give advice to anyone newly diagnosed with PH, I’d advise to trust your specialist team, as you are in safe hands. Don’t be afraid to ask questions and take one day at a time.
AUTUMN/WINTER 2022 emphasis 11
A stroke of success for Catherine PHA UK member Catherine Makin won two medals at the British Transplant Games, combining a love of swimming with a celebration of life.
T
aking gold in the breaststroke and silver in the backstroke was the icing on the cake for Catherine, who entered the Games to give thanks for her second chance. She had a double lung transplant in January 2020, five years after being diagnosed with pulmonary hypertension, and swimming is now
“I’m absolutely chuffed to pieces and so proud of myself. It’s all thanks to my beautiful donor who lives on in me.” AUTUMN/WINTER 2022 emphasis 12
an important part of her routine. The British Transplant Games took place in Leeds at the end of July and saw 850 transplant recipients come together to compete in different disciplines. Catherine, who has been swimming since a child, was inspired to enter following a conversation with her transplant team and after seeing the Games covered in this magazine previously. She had already been swimming two or three times a week since her operation, so it was an easy decision to make. “I thought why not give it a go?”, she said. “Swimming helps my lung function and keeps me healthy, so I was already ‘training’, but it was more about taking part than winning. I couldn’t believe it when I got the medals!” Catherine was part of a team of 20 transplant recipients from Manchester’s Wythenshawe Hospital, and they all took part in different disciplines. Despite being an experienced swimmer, she admits to feeling nervous when she saw the size of
the pool at the venue. “I panicked when I saw it was 50 metres as I’m used to 25. I’m also not used to people watching me swim, but it was a really good atmosphere.” Catherine and her family stayed in Leeds for five days over the event, and together they took part in the non-competitive ‘Donor Run’, a mass participation jog organised by the British Transplant Games to honour those who give the gift of life. “It was just a really good weekend, and I met lots of nice people”, Catherine added. “I’m absolutely chuffed to pieces with the wins and so proud of myself. It’s all thanks to my beautiful donor who lives on in me. There isn’t a day that goes by when I don’t think about her, or her family.”
.
w ith Diane dson n a r g her s scrubs in hi
Keeping busy
at home this
Christmas
Far from being ‘stuck’ in the house because of PH, Diane Taylor enjoys hours creating crafts for people she loves. This is what her handiwork means to her…
I've
I've lived on my own since my husband died in 2005 and I struggle with a lot of things now, like getting dressed. I have nurses that come in and I can go a long time without leaving the house. I went out just five time in the first eight months of this year, but there is a lot that I do to keep busy at home. I started making scrubs for hospitals during the pandemic and I taught my grandson how to make his own for his dentistry course at university. I do little needle-felted animals, Christmas calendars, nativity scenes, and Harry Potter characters too. I also spend time doing genealogy for people, investigating who they are related to, and I attach little resin photos of ancestors onto dangling strings that can be hung on a Christmas tree. I mostly give things away to family, and I also give bags of what I make to my local hospice who cared for my husband, so they can sell them on a stall. I love new challenges, so once I have mastered the art of making one thing, I’ll move onto the next.
I order my supplies online, and I teach myself. Looking on YouTube is a good way of getting started. Over the years the family have all had bits of what I make. At the moment my daughter-in-law keeps asking for little mice for her cats! I’m lucky that my family live locally and visit a lot; they are always popping down or phoning me and asking if I need any help. Every Saturday, my two sisters come round and cook for me, and we all eat together. This will probably be the first Christmas that we don’t all cook for the whole family as it’s too much for us now, but we will be together. The crafting helps me stay positive and I stay positive because I’m stubborn. I’ve been ill since 1997, when medical stuff started going wrong, and I’ve had that many things done to me that nothing bothers me now. Things don’t frighten me anymore.
AUTUMN/WINTER 2022 emphasis 13
TODAY
Could you help us understand what it’s like to live with PH today? TODAY
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Five years ago, we conducted the largest ever survey into the lived experiences of pulmonary hypertension in the UK – and it is now time to see what’s changed. The impact of that survey has been huge. Since 2017, the findings have been used to inform and underpin our work as a charity, secure access to new treatments, and influence government decisions. They have been used in our collaborative work with NHS commissioners and specialist centres, and they have influenced the National Audit of PH, service provision, and much more. It’s vital that we understand what it really means to live with PH now, so we can compare the findings and use new evidence to influence change. This is especially important as we move out of the pandemic and work to secure access to the best treatments and services for this disease. The findings of this survey will influence so much over the next five years, so it cannot be underestimated how important your voice is today. Please take the time to share it.
AUTUMN/WINTER 2022 emphasis 14
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We have included a freepost envelope with the questionnaire mailed with this magazine, so there’s no need for a stamp. If it’s easier for you, and you’d like to save us the postage fee, you can complete the survey online instead. Just type bit.ly/LivingWithPHToday into the address bar or search engine, or scan this code >>> Please share your thoughts and experiences before
31st January 2023
YOUR EXERCISE
QUESTIONS ANSWERED
Carol Keen spent five years as a specialist physiotherapist in pulmonary hypertension, helping hundreds of people get fitter and stronger with the condition. And when we invited members to submit questions for her, so many came in that we’re having to spread them over two issues! Exercise is clearly a topic that’s important to many, so if moving more is top of your New Year's Resolution list, we hope you’ll find these answers useful.
ith Is exercising w why are PH safe, and o do it? we advised t er to this is
CAROL : The answ e know that exercise is safe. W
yes, a lot of research because we have ary hypertension around pulmon s PH d also because a and exercise, an r been getting ou ve e’ w , ls a n io ss profe re ercise and be mo patients to do ex mber of years. active over a nu if ference it can We’ve seen the d t . It’s not just tha ts en ti a p to ke a m t it e also know tha w , fe sa is se ci er ex to to do more day ts en ti a p p el h n ca
ing further day, such as walk g, getting up the without stoppin , or eeding to pause stairs without n ath at the top. re b f o rt o sh ss le being n ts who have bee en ti a p en se ve We’ s, to other activitie in ck a b et g to able randchildren, or play with their g as a result of the rk o w to in ck a b get n n doing. So, it ca ee b e ’v ey th se ci exer of life. improve quality of benefits for Exercise has lots l well as physica your mental as d it’s a really goo wellbeing, and ke ts to start to ta way for patien . their condition some control of u can manage It is something yo ay that you can yourself and a w your health and have input into your wellbeing. nd it’s really Exercise is safe a tients with beneficial for pa tension. pulmonary hyper
AUTUMN/WINTER 2022 emphasis 15
!
Always speak to your PH specialist before significantly increasing your physical activity.
What is the difference between ‘being active’ and ‘exercising’?
Is it ok for me to get out of breath ?
ple worry CAROL: One of the reasons peo they about exercising is because when ath. bre exercise, they might feel short of like And when you’ve got a condition short of pulmonary hypertension, feeling because it’s breath can be worrying for you one of your symptoms. likely to When you’re exercising, you are t, if you’re feel short of breath, and in fac u feel exercising it is important that yo how you’re short of breath because that is . going to get fitter and stronger and to It is important though to gauge are. manage how short of breath you ant that When you’re exercising it’s import but that you feel a little bit short of breath out for a you can still chat. So, if you were in your brisk walk or doing some exercise you, living room, and I was there with ’d be I might ask you how it is going. You wer would able to answer me, but your ans be a little bit breathless. sentences You might have to shorten your ses as you a little bit or take some extra pau that's catch your breath. That’s perfect; s you want exactly the level of breathlessnes to be at when exercising. can’t catch If you are gasping or panting, or you exercising your breath to speak, then you are n. too hard, and you need to slow dow all, If you’re not feeling breathless at then you are being ‘active’ but you’re not exercising.
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CAROL: People of ten get a little bit confused about the dif feren ce between being active and exercisin g. Both are important, wheth er you are managing a long-term co ndition or not. Staying active is doing thing s that involve moving, getting about, an d physical activities that you might do during the day. Generally, they shouldn’t ma ke you breathless, and they shouldn ’t increase your heart rate significantly; th ey should just keep you at a level pace. Exercising is what gets your heart rate up, gets your breathing going , and gets you a little bit sweaty. What counts as activity an d what counts as exercise will be very ind ividual, particularly for people wi th pulmonary hypertension. For some patients, going for a walk might be exercise because it gets them out of breath, it gets their heart rate up and it gets them a bit sweaty. For other patients, who ma ybe have less symptoms, going for a wa lk might simply be an activity for them, an d something they do as part of their rou tine day to day. Some people would be exha usted by walking around the shops. Some people would be able to go round the shops quite comfortably and that would be an activity for them. It’s very individual and you have to work out for yourself when you’r e being active and when you’re exercisin g. Like I said, it is important to do both.
How much exercise should I actually be doing?
dance CAROL: The same rules and gui re is a applies to everyone, whether the We should health condition involved or not. ate intensity aim to do 150 minutes of moder activity every week. as I’ve Moderate intensity activity is, a little ’re described opposite, when you still chat. bit short of breath but you can vated, Your heart rate will be a bit ele t. but it is not going ver y, ver y fas ng little At the moment you might be doi case, or no exercise at all. If that is the t week I wouldn’t suggest you go out nex t away; and aim to do 150 minutes straigh do, gradually increase the amount you by five or ten per cent each week. ght be If you’ve got quite severe PH, it mi y count that only small amounts of activit you might for you as exercise. In that case, get up to 150 minutes quite easily. minutes Anything that is a chunk of ten al, so you or more counts towards your tot doing an don’t have to be going out and ve to be hour of exercise, and you don’t ha . going to the gym for 40 minutes t gets you If you’re doing something tha minutes a little bit out of breath for ten s your 150 or more then it counts toward exercise. minutes of moderate intensity are doing The key is to work out what you now and gradually build it up.
Carol spent five years working within the Sheffield Pulmonary Vascular Unit, with part of her role funded by the PHA UK.
Are there any specific exer that I should or shouldn cises ’t be doing if I have PH?
CAROL: The main thing is that the exercise you are doing is something you enjoy and that is accessible for you. Th at is the best form of exercise; everything else is pretty much on the table. There are no specific exerc ises that you shouldn’t do, but we would advise to avoid lifting anything heavy, an d by that, I mean anything that makes you strain to lift. That is not just lifting weigh ts at the gym, but it might also involve movin g furniture around the house or carrying big ba gs of shopping. Anything that makes you strain or hold your breath to lift is something that might be a bit too heavy for you as somebody with pulmonary hypertension. Other than that, if you’re a little bit short of breath but can still breath e, you can still chat and you’re not feeling dizzy, and you’ve not got chest pain, then you’re ok to go and do your exercise. In terms of safety, the ma in principle is to start small and graduall y build up the amount you are doing – wh ether that is the amount of time you are ex ercising for, or the intensity of your exercise. Start with things you know you can achieve and gradually build it up. That way you will stay motivated, but also ke ep within the boundaries of your limits.
NEXT ISSUE
Carol answers more of your questions, with topics including how to exercise with joint problems, walking, lung function, and how to keep motivated if fitness just isn’t your ‘thing’. AUTUMN/WINTER 2022 emphasis 17
Having grown up with pulmonary hypertension, 21-year-old Kaylee Mynot knows a thing or two about life with a rare disease. In her latest column for Emphasis, she shares the difference her family has made to her journey with PH.
e r a e W ily! m a f be difficult to live with As most of us know, PH can an understanding and at times. However, having has made it so much supportive family behind me easier to cope with. Since I have had PH from the age of one, my family have never really known any n different and they have bee y. bab a s wa amazing since I Even though my parents aren’t together anymore, my mum and dad are still always working together on everything that concerns me and my siblings. I spend a lot of time with my family as we are all really close.
So let me introduce you to my family !
First, we have my mum, Kay. Some of you reading this of may have met her or know my ut her. I’ve also written abo mum in previous articles! My y mum is my best friend, I trul sn’t wouldn’t be here if it wa for her. She is always making , sure I get the most out of life ch and we spend pretty mu
every day with each other. Next is my dad, Scott. He really is my hero. I have always been a daddy’s girl, and my nan is always saying how alike we are ! My dad works full time, but I still see him every Wednesday and we also get to spend the weekend together.
There is so much I could write about when it comes s to my dad. He never ever fail e sinc r Eve le. to make me smi I was little, we have had our little sayings and traditions that are special to us, and most of these really helped when it came to hospital appointments and operations as a child. They are just little things that I’ll remember forever and hope to pass down if I ever have children. I know when he reads this
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my dad will know exactly what I’m talking about and that is what makes it so special. My dad is just the per fect example of the saying ‘not all heroes wear capes’. I feel ver y grateful to have someone so special by my side. He really means the world to me. Then we have my brother Max and sister Cassie! We adore each other and I honestly think life would be y so boring without them. The il unt really do make me laugh er I cry. When we’re togeth there is never dull moment between us. They are the type of people that always have you doing the massive belly laughs. They do of course get on my ner ves sometimes, but that’s siblings for you ! Next up is Nanny Star and Pops. These two people I will truly treasure forever. Most of my childhood memories
Me a nd M y d ad
Me a nd m y m
um
, Ma x, Jayden ucy ,L Cassie
me,
Me a nd r Na n n y Sta
consist of baking with my nan and Pops always coming in and moaning about the mess we made. But I know he secretly loved watching us have fun, and he always got a cake ou t of it! I spent a lot of time with them wh en I was going through a really hard tim e with school and life in general, and I wouldn’t have got through it without them. I have so much love for them. Then there’s Nanny Pa m, and where do I even start wi th her? I could honestly do the worst thing in the world and she would still think I was the best granddaughte r. She’s the nan that worries for everyone ; if it was her way I’d be covered in bu bble wrap and bundled in a blanket all the time. My nan’s house is my saf e space, and there’s nowhere I’d rather be if I’ve had a tough day or I’m feeling down. Lastly there’s my nephew Jayden and niece Lucy – my two litt le busy bees who always keep everyo ne on their toes! I adore being their auntie and they always makes me so pro ud. I always look forward to them telling me all the new things they’ve learned at school. Our favourite thing to do together is the river walk that lea ds to the park.
I’m definitely always exh austed after spending the day with the m, but I wouldn’t have it any oth er way! That’s almost everyone ! We have such a big family I’d be here forever writing about them all, but these are just the special few tha t really do make living with PH bearable. I couldn’t do it without them. Family really is so impo rtant to me, and I feel very grateful that I get to make memories that wi ll last forever with the people I love.
sie Me a nd Cas
Kaylee's column
Me, Na nn a nd Ma y Pa m x
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PHA UK
partner research
Have you been an inpatient in the last 6 months because of PH? If so, you could take part in a unique study into hope in hospital Rev Fran Kissack (pictured) is a chaplain at the Royal Hallamshire Hospital, working to support people across all departments, including the Sheffield Pulmonary Vascular Disease Unit. As part of her PhD studies, she is trying to understand more about what hope is like for PH patients who are in hospital.
What’s involved?
Study participants will be asked to read through a set of statements about hope and arrange them in order of importance. This can be done from home, either via a video call, or by having the statements posted to you. There will just be a few questions to answer about yourself too.
Who can take part?
Fran is looking for people aged 18 or over, and resident in the UK, to take part in this study. You must have spent time as an inpatient in hospital, because of your PH, at some point in the last six months.
How do I sign up?
If you would like to get involved, please complete the online form at www.phauk.org/hope-in-hospital or email fran.kissack@nhs.net. You can also contact her using this email address, with any questions you may have about the study.
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You can be a pa under a tient n PH cen y UK tr take pa e to rt !
Embracing life on a line
“I don’t think anyone can really understand breathlessness until they’ve got it 24 hours a day” At 28, Sophie Gloag lives a full and happy life with pulmonary arterial hypertension. And although it’s not always been plain sailing, she credits her intravenous treatment for making it possible.
>>>>>
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keen and successful equestrian, Sophie used to ride daily and competed multiple times per week with her horses. But shortly after finishing university, at the age of just 21, things started to change. A fall left her in a back brace for three months, and symptoms progressed quickly. “I resumed riding again, and it was my coach that pointed out my cough”, said Sophie. “She asked me where it had come from, and I realised I didn’t know. Then one day when I was in a showjumping competition, I had to pull up my horse because I was so breathless and dizzy, and I had a metallic taste in my mouth.” Following numerous consultations, Sophie was given a diagnosis of idiopathic pulmonary arterial hypertension – a condition she had never heard of. “I remember saying to the nurse, ‘at least it’s not cancer’. She replied that at least with cancer there can be a cure, but there isn’t for pulmonary hypertension. I was just in shock really.” It’s taken time to find a treatment plan that works, but Sophie is now stable and happy on triple therapy consisting of an intravenous (IV) Hickman line and tablets. “I was initially started only on oral meds to which I didn’t respond. I then went onto IV and after six to eight months of the treatment I still wasn’t responding. I was told at this point that I probably wouldn’t be here within five years, and within two years I wouldn’t have any quality of life. “It was at this stage they said they could try putting me on triple therapy, and finally on this I started responding. I had an amazing two-and-a-half years on that combination.” Adapting to life on a line wasn’t easy to begin with.
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“I remember my consultants telling me the line was going to change my life and I wouldn’t think twice because I’d have a decent quality of life”, Sophie remembered. “I found this hard to believe with how poorly I was feeling, and with the thought of having to make the IV up in a sterile place every morning, and being attached to a line at such a young age 24/7. But it’s definitely been worth it.” After two-and-a-half years, Sophie was doing so well that she was deemed suitable to come off the line and start taking the oral medication Selexipag instead. But after a year of feeling ‘fine’ on it, she started going downhill. Swapping to nebulised medication and tablets didn’t help, and in July 2022, she went back onto IV. “I literally had no quality of life with the nebuliser and tablets. I couldn’t even get up the stairs because I wasn’t responding. In the end, I just kept thinking about what I had been like on the IV, and I knew I needed to go back on it.” Sophie said that within 24 hours of being back on IV, she felt like a ‘different person’. And although it does come with some challenges, she has learned to adapt and be organised. “I like to travel and go away places to stay, so packing up all the medication, making sure I have enough spares, and issues like leaky tubes can add to the worry and stress. Even small things like having a shower can feel like a task. But [in terms of daily life] I have the pump in a bumbag and I don’t really notice it’s there anymore.” Having to give up competitive
riding is something Sophie has found difficult, but she now runs her own business supplying equipment to horseracing yards. And living on her parent’s farm, she can still spend time around the horses and go for an occasional ride out. Despite the challenges, Sophie remains positive about her treatment. “I am very lucky to have the IV line because it means I’m able to have as normal a life as possible. “I don’t try and hide the line, it doesn’t bother me, and I have just accepted that it is part of me. If I’m going out or to a party, or wearing a dress, I just thread the line under my arm and put it all into a shoulder bag that I keep hold of.” Sophie credits her ‘amazing’ family and friends for helping her through the last six years, especially when her condition and its symptoms are so often misunderstood. “I don’t think anyone can really understand breathlessness until they’ve got it 24 hours a day. I do feel embarrassed sometimes to say I need to take a break, as I know people are thinking I’m only 28, I look fit and healthy, so what can be wrong with me?” Having the right attitude towards everything, she added, has been paramount. “At the beginning I remember getting really upset about conversations around things like life expectancy, but getting upset doesn’t help, it just causes more stress. I think you’ve just got to be positive, and for me, although the whole process of going to IV medication was scary, it’s 100% been worth it.”
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In September, Sophie’s family and friends raised over £18,000 for the PHA UK by taking on The Great North Run in Newcastle. Find out more on page 56.
“If I’m going out or to a party, or wearing a dress, I just thread the line under my arm and put it all into a shoulder bag that I keep hold of.”
Competing before her diagnosis
A night out with friends
In July 2022, having a Hickman line fitted again
Family and friends have been a huge support
Sophie still enjoys travel and holidays
Sophie with her mum
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Self-help programme from the PHA UK
ARE YOU STRUGGLING WITH ANXIETY?
100% of people with PH who tested the programme said it helped with their anxiety. This four-week self-help programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help you take control of problematic worry and anxiety. ✓ Developed with a team of clinical psychologists ✓ Tried and tested by people with PH ✓ Complete in your own time at home ✓ Totally free of charge
“When I received the booklets, I was determined to get the best out of them. I cannot express my gratitude enough. The clear explanations and easy-to-use strategies to cope with anxiety have been life-changing.” PHA UK member
Request the programme at www.phauk.org or call 01709 761450
www.mypandemic.co.uk
A unique website dedicated to preserving this period of history
VISIT OUR ONLINE
TIME CAPSULE
Featuring pandemic experiences from the UK’s pulmonary hypertension community with over 30 stories, 12 short films, and 2 reports. Captured forever.
We are incredibly grateful to everyone who contributed to this very special project, either by sharing their experiences or submitting something for our online exhibition. We couldn’t have done it without you.
Plus!
Browse our online exhibition, showcasing your photos, poems, memories and more from the last two-and-a-half years
“People living with pulmonary hypertension made huge sacrifices throughout the COVID-19 pandemic to protect the NHS. We must never forget what they and their loved ones did, the challenges they faced, and the strength and resilience they showed.” Dr Iain Armstrong, Chair, PHA UK
Scan this code with your mobile phone to go straight to the website
A life lived to THE FULL Christine Took is thankful for the many years of memories with her husband John. As she prepares for her first Christmas without him, she shares her reflections on behalf of their family.
W
When my husband John was diagnosed with pulmonary hypertension at 59 in 2006, I feared the worst. On the brink of retirement, it seemed all the plans that we’d made would not be fulfilled. Whilst John was very poorly at the beginning of his diagnosis, he did make huge improvements after finding the right balance of medication. When John was given the all clear to travel, we began our tour of the globe. We were incredibly fortunate to build so many wonderful memories in the US, Europe, Australia and New Zealand, including a wonderful Christmas in Florence in 2013 – most memorable for a three-hour midnight mass! Back home, John was a dab hand at DIY. Our four sons, whilst we love them dearly, are not the best when it comes to home maintenance. Many calls were
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Our allotment provided a sanctuary from what was going on in the wider world
made to come over and fix all manner of household issues. Regardless of John’s PH, he was always ready with his toolbox and paint-splattered overalls to get to work. When the first lockdown hit in March 2020, we did find life challenging but always found ways to keep ourselves entertained. Our allotment provided a sanctuary from what was going on in the wider world. We visited daily (socially distanced from everyone else, of course) and watched our vegetables grow as the seasons changed. We’d pickle onions from our allotment and John turned his hand to cooking, baking bread and delicious savoury treats.
“He is sorely missed by us all, but the memories we have made together keep us smiling” John loved his four boys and four grandchildren. They meant the world to him. Just six months before John passed away, we spent a family weekend in Stratford during Halloween. Despite being very poorly, John was front and centre of
the proceedings, dressed as a ghost to accompany my witch outfit. Our final Christmas together was a low-key affair at home… until our third son, based in the US, came through the door unannounced. John with his sons, John was ecstatic L-R Robert, Christopher, to see him Michael and David. (as was I). John loved a flutter, especially PHA UK for all their support over on the horses and football, but he was the years, as well as Hammersmith a conversative gambler, never betting Hospital, the doctors and the anything more than a pound each way. specialist nurses, all of whom Just before John passed away, he was in cared for John so wonderfully. the process of picking his horses for the Our boys have raised over £10,000 Grand National. for the PHA UK with their marathon He is sorely missed by us all, but the endeavours over the years, and memories we have made together keep we’ve raised a further £630 since us smiling. John’s love of the Rolling John passed away. Stones meant his recessional music at We will be sending a further donation his funeral had to be ‘Hey, you, get off of to them at Christmas, as a present to my cloud.’ He wanted us all leaving the our dad, bampi, brother and beloved service with a smile on our face, and he (but sometimes exasperating!) husband! certainly did that. Yours was a life well lived, John. I want to give my thanks to the
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PH Y A D UK 2 202
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Lots of you rose to our ‘Go the extra mile’ challenge, covering the distance in support of everyone affected by PH.
Myra went Morrison a t he e xtra nd her hu m il e toge sband t her
In many cases, funds were raised as well as awareness and we are truly grateful for this kindness. This is just a small selection of what some of you got up to…
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ed re kk e t l o c Ni on Alan m in just n, k 43 ss Londo c ro very day a km for e his one year of e ’s lif wife
Iv y C o gran x joined d ma her a for a mile nd dog in t h e rain Mark the fl Pincock fl a e durin g for PH w g a ru even t in D nning ubai
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The theme for PH Day UK was #HearOurVoices and many of you shared your stories to make yourself heard. Over the next few pages, hear from three members who did just that >>>>>>>>>
s i e r e “Thmuch so earn l o t ” H P t u o ab Preston-based Danielle Masterson was diagnosed with idiopathic pulmonary arterial hypertension just months after giving birth.
At 34, she shared her story for PH Day UK to show that the condition affects people of all ages.
I
gave birth to my little girl Loretta in August 2020, and by December, I was so breathless I couldn’t get up the stairs. I was given an inhaler by my GP, but things didn’t change. Seven months later, I was shopping in Asda with my mother-in-law and kept having to sit down. She told me my lips had turned blue and insisted on calling the doctors. They checked my oxygen levels, and they were so low that I was sent to my local hospital in an ambulance. A scan showed the right side of my heart was double the size of the left, and more tests followed. I was referred to a specialist centre in Sheffield, where I was diagnosed with pulmonary hypertension. Everything was explained to me, but I was so poorly and panicked that it just went in one ear and out the other. I had already spent two weeks at my local hospital, and I then spent another four weeks in Sheffield. I missed Loretta’s first birthday, and my husband’s 30th.
I thought I was going to die, and that I’d never see my daughter start school. I was on eight litres of oxygen at rest, and I couldn’t even get out of bed to go the toilet. I was so ill that my independence was gone, and for someone so young, that was a big thing.
An altered life
My only option was to start on intravenous medication via a Hickman line, and although I was worried about it, I knew it would mean I would have longer with my little girl. Within a couple of days of being started on it I could manage to walk, and every day I got stronger. When I was discharged from the specialist centre, I cried with
21 on the Danielle in Ju ly 20 spita l ho to day she went in
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PH Y A D UK 2 the emotion because it felt like the team there had become part of my family. They saved my life, and I am so grateful to them. I do feel like PH has changed everything. I have to carry oxygen around with me and I can’t pick my little girl up. I can sit on the floor with her, but I can’t play with her properly. I used to love having baths with her, but I can’t anymore [because of the Hickman line] and I can’t go swimming with her either. Loretta, now two, has been brilliant with it all though. If she sees my line hanging out my bum bag, she’ll tuck it back in. It’s all just part of her life now.
Changing perceptions
Because I’m young, I get funny looks and stares from the older generations when I park in disabled bays. Someone even wrote ‘60 +’ on my windscreen as a way of telling me I couldn’t park there because I wasn’t over 60. I have to take oxygen with me when I go out and if
tt Danielle, Lore
a and Adam
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people are close enough to see the cannula in my noise, I then notice snide comments about what might be wrong with me. I just wish people would be more understanding. I waited so long to have Loretta. Before her, I’d experienced three miscarriages, and lost my baby Lilly-May when she was stillborn at 38 weeks. I had a lifetime planned of things I wanted to do with Loretta, but all of a sudden, not even a year after she was born, I was told I had this disease. Being diagnosed with PH was such a big shock for me and my family and even now we don’t fully understand it. There is so much to learn, and I just want to spread awareness and help more people to know about it. It’s important for me to help people understand that you don’t have to be over 60 to have this disease; you can be 34, or any other age, too.
Read Talisa's story AUTUMN/WINTER 2022 emphasis 31
l e e f l l i t s “I have to I t e a k h t li e v o r p ’m ill” I Talisa Shurlock is 34 and lives in Essex. She was diagnosed with PH in July, after a long battle to find out what was wrong – and some people still don’t understand her invisible illness. Talisa shared her story for PH Day UK to raise awareness and help others who may be feeling the same.
I
was exercising at home during the first lockdown when I started getting dizzy and out of breath. I used to go the gym every day before they shut, so I was a fit person, which is why I noticed it wasn’t right. When I saw my GP about it, I was referred to an asthma nurse and given an inhaler. I knew I didn’t have asthma, but because of the pandemic, having a spirometry (lung function) test wasn’t an option. For a whole year, I was trialed on different inhalers, but none made any difference. Just after Christmas 2020, I went back to my GP and asked for a respiratory referral. I was also given a long covid referral, as they thought that’s what could have been making me ill.
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The long covid appointment came first, and the doctor couldn’t understand why my oxygen levels were so low during the six-minute walk test I was asked to do. I had five or six appointments to investigate long covid, but it wasn’t diagnosed. Things were getting worse and worse throughout last year. I went abroad, and when I walked up a flight of stairs at the airport I passed out. It got to the point where I couldn’t even get dressed without being out of breath, and I couldn’t walk and talk at the same time. It was all very frustrating because I felt like the doctors I saw thought I was making it up. I was trying to explain I was out of breath – but they were telling me I had a clear chest x-ray, I didn’t have asthma, and I didn’t have long covid. I kind of felt like no-one really believed me.
Eventually, in March of this year (2022), my respiratory referral came through and I had a number of scans, one of which showed a thickened artery. I was referred from my local hospital to the specialist PH centre at Royal Papworth Hospital. When I knew I was being referred, I looked up PH and researched everything about it, so I sort of accepted that’s what it would be. I did a weightlifting competition just one day before my right heart catheter [a ‘gold standard’ but invasive test used to diagnose PH] and the pulmonary hypertension was confirmed. A tiny bit of me was relieved they knew what was wrong so I could then go forward and have treatment. I was told straight away that I shouldn’t do any more weightlifting. I still work out, but without weights, as it helps with my anxiety. Sometimes I wonder what the point is, but it’s important to me that I still exercise every day.
Living with a disease no-one knows about
My family and friends are as supportive as they can be, but it’s hard because no-one has ever heard of pulmonary hypertension. I feel like I’m always having to explain what it is because I don’t look ill. It’s invisible unless I try and walk up some stairs. I feel paranoid that people don’t believe I have a serious health problem, because I go to the gym, and I don’t look unwell. I feel like I have to prove there is something wrong.
ing Ta lisa weightlift s si no before her diag
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I have social anxiety, so I didn’t go out much anyway, but PH has made the anxiety worse. I feel self-conscious using disabled toilets when I’m out because of PH being a hidden disability. The toilets are often in the middle of a restaurant or in front of everybody, and I feel uncomfortable that people may be thinking there is nothing wrong with me. Having PH has affected the anxiety in a number of ways. I haven’t been able to work for a while [because of being ill] so now I’m scared to go back to work. It’s also the low mood. It does sometimes catch me and make me feel quite depressed, even though I know there are other people with PH who are worse off than me. Thinking about the future is difficult. But exercising helps keep me positive and I’m also having cognitive behavioural therapy (CBT) for the anxiety which is helping. My specialist centre has also been amazing. I want people to understand that just because you can’t ‘see’ PH, it should still be taken seriously. I still feel like I have to prove that I’m ill sometimes, and it would be so much better if people knew more about it. I also wanted to share my story because it has really helped me reading about others who have PH. So, if I can help just one person in return, it will be worth it.
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Finally getting answers
Read Charoula's story AUTUMN/WINTER 2022 emphasis 33
, n o s r e p a " c m i t a s I i t “ a t s a t o n Charoula Michael was diagnosed with PH whilst pregnant during the pandemic, and she defied the odds to be able to share her story. To mark PH Day UK, the 39-year-old from Surrey explained what she went through, and why more people to need to understand this complex disease.
I
felt very breathless and had extreme fatigue throughout my pregnancy with Andreas, who is now two. I just knew there was something wrong, and at around seven months pregnant I was being asked to go into hospital for daily checks on the baby because of the position of my placenta. During one of these visits, I asked the midwives to check my oxygen levels, as the previous night I had been gasping for air. The levels were so low that I was admitted immediately, because they thought I had covid. This was during the fist lockdown in April 2020, and I was taken to an isolation room. My husband couldn’t be with me, and all the staff were in full PPE. It was terrifying. I had numerous tests, and a consultant came to see me. I will never forget the look on his face; he looked like he had seen a ghost and he was stumbling over his words. He told me my heart was double the size it should be, and I was being transferred to a high dependency pregnancy unit at another hospital. I can’t explain how petrified I was.
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Getting the right support
I was met at the unit by seven consultants, all pacing up and down. They said I had a serious condition called pulmonary arterial hypertension and there was a 50% chance of survival for both me and my baby. I was transferred to a room in intensive care and started on some PH treatment that would give me a better chance of living when the baby was delivered. I had nurses with me 24 hours a day. One stayed next to me and one stood guard at the door, because I was at such high risk of covid. I still couldn’t see my husband, and none of my family live in the UK, so I felt completely isolated. But I was determined to live, for my baby. After a week, he was delivered by caesarean section. There were about 20 people involved in the surgery and I had to have life support lines inserted, in case I crashed. Andreas was tiny, and struggling to breathe, so I could only hold him for four minutes before he was taken to intensive care. Because of covid risks, I was only able to see him twice in two weeks. I was fighting for my life, and the only thought I had was that my son was doing the same and I couldn’t be with him. After three weeks doctors decided that because I was now responding to PH medication, I’d be safer at my house, away from covid risks in hospital. Andreas was moved to a nearer hospital, and eventually he came home. Doctors think I had PH for a long time, and it was the
A ndreas w as care after h ta ken to intensive e was born
PH Y A D UK 2 202
in hospita l
2020
pregnancy that exacerbated it. I was told that if I hadn’t got pregnant, I would never have started on treatment, and one day my heart would have just stopped. I do believe that getting pregnant essentially saved my life. Two and a half years after all of this, I am stable on my medication and the size of my heart is reducing. I’m able to live a fairly normal life, and for that I feel lucky. I want other people with PH, especially mums diagnosed during pregnancy, to know that it doesn’t have to be a life sentence. My story shows that a happy ever after is possible. Andreas has been the main motivation to keep me going through all of this, to wake up every day and fight. PH is not going to win. Not all days are good ones. You carry your life expectancy on your shoulders, but there is no shame in not coping sometimes. I still have nightmares about everything that has happened, but I am getting help.
or tly as sh ir th e r d A n er h i s b af t
Fighting an invisible illness
#HearOurVoices
in Charou la
A lot of people don’t understand what it means to have PH and how it can affect your life. To many, a sick person is someone who has cancer. I don’t look ill and I am a very determined person, so most people around me don’t understand just how unwell I am and how serious my condition is. They don’t have any empathy or sympathy because they don’t understand it. I feel like the only people who do are the PH community. I get judged by people that don’t know me too. I’ve been told by a stranger that I should be ashamed of myself for using a disabled parking space when I don’t need one. There have been times when I’ve refused to use my blue badge even though I desperately needed it, because I just couldn’t cope with the looks and what people would say. I wanted to share my story so the wider public can learn more about invisible illnesses and understand that those living with them need support rather than judgement. I am a person, not a statistic, and not everything is black or white.
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Promising results for new PAH drug A new medication, that could be approved for use next year, has produced promising results in its latest clinical trial. Using six-minute walk tests, the STELLAR trial showed that when sotatercept is given in addition to other therapies, it significantly improves exercise capacity in people with pulmonary arterial hypertension. The drug, which is given under the skin as a subcutaneous injection, is the first of its kind to rebalance what’s known as the ‘bone morphogenic protein pathway’. While existing treatments are designed to help manage the symptoms of PH, sotatercept is the first to target the root cause of the disease. Neil Hamilton, Consultant Pharmacist in PH, told us: “Sotatercept is an exciting new treatment which works in a different way to any of the current medicines we can prescribe. We are optimistic about sotatercept because the results from early clinical trials have been very positive. More evidence of effectiveness and safety is needed, so further studies are underway. These international trials will involve large numbers of patients and if these prove successful, sotatercept could be approved by regulatory bodies next year. As such, it is not currently available to anyone outside clinical trials. Sotatercept may not be suitable for everyone with PH,
AUTUMN/WINTER 2022 emphasis 36
but expert centres in the UK are recruiting patients to these trials – so if you are eligible, your centre would discuss your participation at your next clinic visit.” Online reaction to the results of the STELLAR trial: "This is a big deal in pulmonary hypertension”
Dr Mark Toshner (@mark_toshner)
“This might be the most exciting advancement in pulmonary arterial hypertension since I started practice” Dr Jason Weatherald (@AlbertaPHdoc)
Blood sample research may help identify the best treatment for CTEPH A study by scientists at Royal Papworth Hospital could lead to doctors being able to identify which patients with chronic thromboembolic pulmonary hypertension (CTEPH) would be best suited to pulmonary endarterectomy surgery. The surgery, knows as a PEA, removes scars made by old blood clots in the pulmonary arteries and it is potentially curative. However, some may be left with residual PH, and as a major and complex operation, it is only suitable for approximately 60-70% of patients.
Researchers at Royal Papworth Hospital have studied blood samples from patients before and after this surgery, to identify changes in chemicals contained within the blood. The study, titled Plasma metabolomics exhibit response to therapy in chronic thromboembolic pulmonary hypertension, has shown differences between healthy individuals and patients with CTEPH, including changes correlating with the severity of the disease. A small number of the chemicals were also found to be different from those in patients with idiopathic pulmonary arterial hypertension (IPAH), which may lead to a new a way of identifying the type of PH a person has. Ultimately, those behind the study believe that chemicals that are either produced, used or changed by the heart and lungs may eventually be used to identify which patients are most suitable for PEA surgery to treat CTEPH. The researchers would like to thank all the patients who took part in this important study.
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Have you ever heard the saying ‘food is medicine’? Here at the PHA UK we have long been advocates of a healthy lifestyle alongside medical treatment – and what we eat is a significant part of the puzzle.
n o i s s i m A d o o g r o f ! n o i t i r nut N
utrition is something we can all control, even when there so many other things we can’t, and as a charity we will be focusing more on this over the next few months. This important work will be led by Shaun Clayton (pictured), Director of Membership Support at the PHA UK. As well as ten years of experience supporting the PH community, Shaun is a certified nutritionist – and passionate about the power of food. Here, he explains more…
“It’s so important to look at health holistically, and what we eat is an integral part of ‘feeling good’ – both physically and mentally. This work will all be focused on helping people live the best lives they can by optimising what they eat, whatever their specific goals may be. Priorities could be weight loss, weight gain, maximising energy, or simply making the best nutritional choices. My aim is to empower members to make the best choices for them and
their nutrition, with tips on how they can eat in a way that fits with their lives as well as their goals. At the PHA UK we understand that even when you know what you ‘should’ be doing, it isn’t always easy. Challenges can come in the way of time, physical limitations, costs, and of course, willpower and emotional obstructions. That’s why our work will focus on these aspects too. We have consulted with a focus group of members around priorities in nutrition, and guided by this feedback, we will be producing a number of resources throughout 2023. The PHA UK will be leading this work whilst collaborating with the network of specialist PH centres, and I’m really looking forward to supporting the PH community in this way.”
Find out more over the page
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A missiodn for goo ! nutrition
Supporting our ‘mission for good nutrition’ will be Chermaine Kwant, a nutritionist with personal experience of PH. Chermaine was diagnosed with idiopathic pulmonary arterial hypertension in 2011, and she has spent the last ten years learning more about how good nutrition can improve quality of life in illness. She is now a researcher at Amsterdam University Medical Centre and is completing a PhD in the subject of nutrition and pulmonary hypertension.
A cup of tea with
Chermaine… Has food and nutrition always been of interest to you?
“When I was 12 years old, I really gained interest in cooking. I decided I wanted to become a cook. When the brother of my former partner became very sick, he got help from a dietician. I’d never heard of this profession, and it sparked my interest. I decided I wanted to become a researcher and study a rare disease and help these patients with their nutrition. What I never could have imagined was that I first had to get a rare disease myself, before I would even get the opportunity to become a researcher.”
Can you tell us about your personal journey with PH and how that led to researching nutrition in a professional capacity? “In the summer of 2011, I was feeling very sick during my vacation, and I thought I had pneumonia. When I returned, I kept feeling really tired and was short of breath. On Christmas Eve of that same year, I had a mild stroke and whilst in hospital the doctors noticed that there was something really wrong with my heart. After a few tests they told me that I suffered from idiopathic PAH and had approximately one year left to live. However, I responded very well to treatment, and couldn’t believe I was that sick. But after the first year, things worsened. Although I travelled, worked, and lived my life to the fullest, I needed more and more medication and I started trying different diets to make myself feel better. They did make me feel better, but the PAH still progressed, and a lung transplant was inevitable. This took place five years after my diagnosis.
AUTUMN/WINTER 2022 emphasis 38
“It’s not about ‘curing’ the disease. But every opportunity to make yourself feel better is a win.”
A year after the surgery, I visited the hospital in Amsterdam where I was treated for my PH and spoke to my former doctor. He asked about my thoughts on nutrition and PH and while I spoke, he started to draw a timeline on a whiteboard. ‘And there is your thesis!’ he said. He explained he was asking me to start a PhD. It felt like a fairytale after being hospitalised for so long, and the long recovery after my transplant.”
Can you give us an overview of your research in the area of nutrition, and what the findings have been so far? “I study how nutrition and lifestyle interventions in pulmonary arterial hypertension affect quality of life. First, my research involved studying what patients actually eat and if there were any deficiencies of vitamins and minerals in their blood. The most important finding of this part of the study was that sugar plays a bigger role when it comes to fluid retention than salt – which is different to what is commonly advised in terms of cardiovascular disease. In the second part of my study, we tested an e-learning tool and two types of diets. The main focus of the e-learning was to give insight on nutrition in relation to quality of life. The patients were coached in setting their own goals in making nutritional changes. This part of the intervention was very effective and the patients that participated best, and made most changes during the e-learning, had the best improvement in their quality of life. We are very excited about these outcomes, and we want to study the effect of this e-learning in a worldwide cohort. There is a lot of interest in nutrition, so hopefully this will help us the raise money for what I believe is a very important study.”
Why is nutrition so important when it comes to managing chronic health conditions like PH? “I think nutrition is the base of every form of life. Every cell in your body can function, whether this is good or maybe not so good, because of the way you feed it. You can compare yourself with a car. When you need petrol for fuel, and you use diesel instead, you know that you won’t be able to drive as far (or maybe at all). I also think nutrition is a relatively easy way to empower yourself. You eat and drink every day, so why not take control over your disease and try to make yourself feel better? It’s not about ‘curing’ the disease. But every opportunity to make yourself feel better is a win. I’m not saying this as a researcher or as a nutritionist, but as a patient. Because I know from that point of view that nutrition can make a difference. It can make the difference between feeling completely tired, feeling okay, or maybe even feeling really good. And that is a huge difference when it comes to PH.”
How do you feel about being able to help educate people with PH in the UK about the importance of nutrition?
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“I’m really excited about this next step and can’t wait to meet the PH teams and some patients. Hopefully I can help and inspire them to make different choices when it comes to nutrition, that will improve their quality of life.”
Take 5
In future issues of Emphasis, we will bring you detailed guidance on specific aspects of nutrition and PH. If you’re keen to make changes now, these are Shaun’s top five tips for eating well with PH:
With PH you can have good days and bad ones 11 and often cooking can be the
last thing on our minds during those bad days. Something like batch cooking on the good days can really help. It sounds simple but knowing that you have a hearty stew sat in the freezer read y to go may just make the day that bit easier and gives you one less thing to think about.
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We often hear about how we shou ld cook using ‘organic’ produce or how ‘fresh’ vege tables are best. Whilst there is a small amo unt of truth in this, the evidence shows that froz en vegetables are just as good. They still contain all the vitamins and minerals to aid a healthy diet but at a fraction of the cost of their organic counterp arts.
Certain medications can cause nast y side effects 33 whi ch makes it hard to gain weight. Simple changes like adding more olive oil to your cooking can add extra calories without hav ing to give it too much thought. These extra calories could help you gain weight healthily quite quickly.
4 4
‘What if’ statements are something I’ll talk about more in depth in the futu re. But for now, it’s always handy to ‘plan ’ for things. So, for example “what if I’m going to be an inpatient for a few days, is there anything I can pack to take with me that match my nutritional goals?”.
Finally, don’t underestimate the pow er of 55 sma ll changes. Don’t put und
ue pressure on yourself to get your diet perfect. Good in this case is great! And making a few small changes can make a huge difference.
AUTUMN/WINTER 2022 emphasis 39
t r e p x e ic e
Welcoming
winter There’s plenty you can do to prepare for both the colder climate and seasonal challenges, as Consultant Pharmacist Neil Hamilton explains…
I
thought that I’d take this opportunity to summarise the most important considerations to keep you well over the coming months.
Vaccination
A new COVID-19 vaccine has been developed, which covers two strains of the virus (the original, plus Omicron). This vaccine is currently being rolled out and I would recommend you have it as soon as you can. COVID-19 infections and hospital admissions are on the increase, so this is the best way of protecting yourself. In our hospital (The Royal Hallamshire, in Sheffield), the staff are being offered the flu vaccine too.
Not many people caught flu last winter, so there isn’t so much natural immunity in the population this time around. In addition, we can all socialise without restrictions this winter, so vaccines will be vital in protecting our loved ones and ourselves. Making sure everyone who is eligible has the flu vaccine as well as the COVID-19 booster has become a priority for the NHS and there are national advertising campaigns reminding everyone, with very good reason. It is safe to have these together if you are offered them at the same time, and you may be able to receive vaccines at your local pharmacy if that is more accessible to you than a clinic.
Cold & flu remedies
For anyone with PH unfortunate enough to come down with a nasty cold, or even flu, the local pharmacy should also be your first stop for some helpful advice. Not only is your pharmacist available without an appointment, but pharmacies are usually open longer hours than a GP surgery, so should be much more accessible. The pharmacist will be able to advise
AUTUMN/WINTER 2022 emphasis 40
Neil Hamilton is a Consultant Pharmacist at the Sheffield Pulmonary Vascular Disease Unit. He has many years of experience in the field of PH, both in his clinical role and through his long-standing association with the PHA UK.
adv
you which remedies will be best for you. In terms of PH-specific advice, I would advise against patients with PH taking decongestants such as pseudoephedrine (found in Sudafed and other products) as this constricts blood vessels. I also advise to avoid drugs known as anti-inflammatories such as ibuprofen. Whilst one-off doses may be harmless, these can cause problems with your kidneys and possibly worsen breathlessness. Whenever you seek advice over the pharmacy counter, it is important that you take along an up-to-date list of current prescribed medicines so that the pharmacist can avoid any potential interactions.
Homecare medication deliveries
Although the homecare providers involved in PH do a great job for the vast majority of deliveries, there are occasional glitches, as with any service.
Postal strikes
Some of you will need to post blood boxes to your PH centre because you are prescribed ambrisentan, macitentan or bosentan. As I write this in the autumn of 2022, the strikes at Royal Mail are already impacting some samples being sent in, and there are further strikes planned in December. It is much better that your appointment is rearranged for a later date when there is not a strike, than
A few extra thoughts…
Over and above preparing for a healthy and safe winter, readers of Emphasis may have taken part in PH Day UK on November 4th. As a pharmacist involved in PH, this coincided with the annual 'Ask Your Pharmacist’ week in the UK (31st October - 7th November). You may have seen posters or other communications in your community pharmacy or GP surgery, as we in the profession want people to be more aware of long-standing and new NHS services, plus the skills and expertise on offer in pharmacies across the UK. Community pharmacies are very often open longer and are more accessible than GP surgeries, whilst online pharmacies are increasingly
We are also seeing occasional medicine shortages across the board (not just PH medication). In order to protect yourself from potentially running out, please take the time to do regular ‘stock checks’, so that you can place orders, request repeat prescriptions, or arrange deliveries, in plenty of time. My advice is to always carry approximately two weeks of additional supply as a buffer. That way if there is any problem, you are much less likely to run out. If you are told of an issue with your repeat medication, have a chat with your local pharmacist who can advise of the likely length of problems and, if necessary, discuss suitable alternatives. If you have any queries regarding
your stock levels or delivery dates, your PH centre is unlikely to have the information you need, so the best people to contact are the delivery companies directly. You may have their number from a welcome pack, but here is a reminder:
for the samples to arrive at the lab unsuitable for testing. As always, please arrange your bloods to be taken on Monday, Tuesday or Wednesday so they are not held up over a weekend, but also think about the strike dates so that hopefully your sample is not held up. The strikes may also affect clinic letters, appointment dates and other correspondence, so please be patient. Winter is often a busy time of year
and there is a lot going on, so hopefully these suggestions may help you through it.
popular as a convenient way of accessing GP-prescribed medicines. Many of you will know that the PH centres in the UK work closely together, with regular meetings and dialogue. This is so important to ensure that we can maintain the high standards of care we strive for. We all met up in Birmingham recently for the first faceto-face meeting since the COVID-19 pandemic and it was great to see all the centres represented. In addition to an excellent line-up of presentations and speakers, the renewed interaction with colleagues (some new, some old friends) was a real highlight. Closely following that was our first in-person PH Professionals meeting for a long time, in London. We are
fortunate that having not met up in person for three years, it was not de-railed (literally!) by train strikes before and after our meeting. Regardless of your political view and support (or not) of industrial action, we are having to cope with disruption to our plans in a number of ways, and as I write this, in autumn 2022, COVID-19 infection numbers are rising again in the expected seasonal wave. Although everyone will cope with winter in different ways, my advice is to plan ahead and be especially organised to try and reduce the impact of all this disruption. That’s why I thought ‘welcoming winter’ would be an appropriate subject for this issue’s column.
Sciensus (formerly known as Healthcare at Home)
0333 103 9499 Polar Speed 0800 783 3178 (+ option 3) Pharmaxo 01225 302188 (+ option 1) Healthnet 0800 083 3060 Lloyds Pharmacy Clinical Homecare 0800 090 2056
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Hope, family, and faith in the NHS This winter marks 20 years since Julia Taylor was diagnosed with PH. Here, she shares what has meant the most to her over the last two decades – and why she wouldn’t change a thing…
AUTUMN/WINTER 2022 emphasis 42
Julia on her wedding day in 2017 with children (L-R) Chelsea, Matt and Kerry With her grandsons
I
was 32 years old when I was told I had idiopathic pulmonary arterial hypertension. It was October 2002, and the diagnosis followed a year of being really breathless. I have had asthma since being a child, so my doctor kept putting it down to that, but things got so bad that I couldn’t even carry my handbag. Eventually, after many tests, I was told that I had PH. I was a single mother, and my children were just ten, nine, and seven. Our lives were turned upside down. I remember my mum looking PH up on the internet and it saying the prognosis was just 18 months. I started off on tablets and ended up
With her children in 2002, a few months before her diagnosis
going onto a nebuliser for a few years. I would go along to my son’s football matches with a big leisure battery so I could take my medication there. I was in a wheelchair at that point too, and it would be dragged out rain or shine. It was an ‘interesting’ time! It turned out the nebuliser was helping my lungs but not my heart, so I went onto intravenous medication for quite a few years. I didn’t think about the prognosis on the internet, I just took every day as it came. My 40th birthday, eight years after diagnosis, was a real milestone. We had an eighties-themed fancy dress disco to celebrate; we never thought I’d get there. These days, I’m on subcutaneous remodulin, which is implanted under my skin. And although I’ve been very poorly at times over the years, I now basically live a normal life. I am very well, I can look after my grandchildren, and I can walk to a certain degree. I do have extreme pain when the drug is re-inserted into a different site, which has to happen every few weeks for me, but you take the rough with the smooth. I’m still here, I’m still alive, and that’s the most important thing. Alongside the medication, I’m sure it’s my mindset that has helped me through the last 20 years. You have to find something to be thankful for, however small, and hold onto it.
I’m very lucky. I have seen my children grow up, which I didn’t think would happen, and I now have two grandsons. Of course, my medical team have been amazing and played a huge part too. I’m under Royal Papworth Hospital and because I live in Cambridge, my journeys to my specialist centre have never been long. The team there have seen my highs, my lows, and everything in-between. They have saved my life, and I follow what they say to a T. If they tell me to jump, I ask them how high, and how many times. Having my children as a focus has also really helped. They have always given me a purpose; family is everything. I do sometimes imagine what life would have been like without PH, but I don’t think I would change anything because it has made me a better person. I see life differently; I appreciate the smallest of things. I love being out in nature, I love walking, I love all the seasons… I just have a different perspective and I don’t think that would be the case without everything that’s happened. I do what I can to give back for the help I’ve had from the NHS. I get involved in trials whenever possible, and I’ve spoken to other patients, at the request of my clinical team, about what it’s like being on IV medication. Hope has been huge for me over the last 20 years. I even have a tattoo on my arm of a Nordic rune which means ‘hope’. You have to find things to be hopeful for, or grateful for, no matter how small. If the sun is shining, that’s great – but if it’s raining, it means there might be a rainbow, or it’s good because your plants are getting watered. There is always something. Hope is everything. If you have got hope, then there is a future in front of you.
AUTUMN/WINTER 2022 emphasis 43
Safe spaces to talk to others affected by PH
Our private Facebook groups are a valuable source of support and advice from people who truly understand. Each group has a strict screening process to ensure those requesting to join are genuine, so you can be confident of privacy. They are safe spaces to talk to other people with similar lived experiences.
PHA UK Official Facebook group
This is our original forum, which now has almost 2000 members. It’s a very active group, with responsive members who offer advice and support at all times of the day and night.
Join here: www.facebook.com/groups/125342770826215
PHA UK Official Carers Group
This forum is exclusively for family members, loved ones, and anyone who provides care or support for someone with pulmonary hypertension. Set up in 2021, it is growing to become a valuable source of connection.
Join here: www.facebook.com/groups/402808577486104
PHighting On: Life after loss to PH
This group was set up by PHA UK members with our support. It is a safe space for families and friends to support each other, share their experiences, feelings and memories – and connect with others that have experienced loss due to PH.
Join here: www.facebook.com/groups/215307796620821
rofile in a Facebook p e v a h to d ee p at You do n roups. Sign u g e es th in jo order to and easy ! om – it’s free .c k o o b ce a .f www
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. . . T N A BRILLdgIe in our quick quiz for kids!
Test your knowle
5 Sneezes can t r
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e name 1 What is thin an of the ma orgath that helps you bre e? me as a pair!) (Clue: They co
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2 Babies have
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more bones that adults – true or false?
mps blood u p n a rg o h ic h W 3 around your body? 4 Where is the smallest
bone in the body? A. Leg B. Wrist C. Ear
7 How many ribs are
in a human body? A. 12 B. 24 C. 18
e human 8 Two parts of thto grow
body continue for your entire life.? Can you name them
above your neck!) (Clue: They are both
How did you do? Turn to page 63 to check if you got the right answers!
AUTUMN/WINTER 2022 emphasis 45
nist sis colum had a h p m E d has Young ars old an tension e y 1 1 is y er Emil erial hyp t r a y r a n s 3. pulmo ce she wa ool in in s ) H A (P ary sch d second e t r a t ’t wait s e Sh d couldn n a r, e b it… Septem all about to tell us
Starting y r a d n o c e s y l i m E y e d b l e o t o s h n sc e v a r G with PH da y t s r i f y ool e on m M sch y r a d n of seco
d secondary This September I starte School school. I go to the Clere d so I can which is in my village an to school, I meet up with walk there. On my way really enjoying my new a few of my friends. I am ferent subjects. I have school – I love all the dif e, netball and choir. take with me joined three clubs – danc portable fold up chair to but still , ds en fri w ne d an br need to sit down I have made some going upstairs in case I en wh . too ol ho sc old see some friends from my and rest. ent fer dif few a in me ts ec en I get to my At school my PH aff times I use the chair wh me , So ms roo ss cla of ors o flo her than stand while ways. The school has tw classroom so I can sit rat irs, sta e th on t ou d ffe pu t but no lift. I find I ge waiting for the teacher. und floor to gro e th m fro go to ve ha I especially if ve my class 5 minutes rd to stop to breathe on I am also allowed to lea the second floor. It’s ha e ground floor to the dors are busy becaus if I have to go from the rly ea the stairs when the corri the busy corridors. the crowd. In PE at the top floor so I can avoid you get swept along with a es y goal shooter, tball and that requir netball, I will usually pla In moment we are doing ne nning, it, where there is less ru so a lot of the time I am e d an lik t ou ion ab sit po ing a nn or ru of lot , ups as well as matches joy netball! and when doing warm out of breath, but I do en eath. out if I get too out of br sit to ed ow all ys am wa I d fin helped me to Luckily, the school has ges. I have a card to carry to overcome the challen explain to teachers why with me that I can use to stop to breathe on my I am late if I have had to en given a light way to a lesson. I have be
ng I hope you are all enjoyi your new school term!
AUTUMN/WINTER 2022 emphasis 46
Clothing range Unhidden is designed specifically for people with health conditions, taking into account mobility problems, swelling, Hickman lines, and more. We spoke to founder Victoria Jenkins, who lives with chronic illness herself, about how her ‘adaptive fashion’ business is aiming to change representations of disability.
Fashion that fits
As
a former employee of Victoria Beckham’s fashion empire, London-based Victoria has made the move from celebrity status pieces to clothes that really matter. 'Unhidden' was launched in 2020 after a chance encounter with a woman with cancer chimed with Victoria’s own experiences of the challenges of ‘regular’ clothing. With a paralysed stomach, diseased digestive organs, and chronic pain, Victoria found fashion physically hurt – and admits she used to stay at home following her many surgeries, simply to avoid having to get dressed. During one hospital stay, she met a fellow patient who, with cancer and other health conditions, was constantly having to undress for doctors to deal with her arm line, chest port and stoma. “This lady told me she couldn’t dress for work, or even how she wanted at home, and she had to get naked every time doctors came around”, said Victoria. “This made me think about modesty and dignity as well, which is obviously a huge problem”. Victoria heard from her that pyjama tops and loungewear were the only options, because ‘nicer’ clothes wouldn’t adapt to her needs, and suddenly the idea for Unhidden was born.
CONTINUED >>> AUTUMN/WINTER 2022 emphasis 47
The range, which includes products for both men and women, caters for many different health conditions through the use of adaptive features. For example, the shirts all have openings in the arm for easy access for lines or procedures, and wrap tops are designed for discreet tube access. Twill trousers have adjustable front wraps to allow for changing stomach size, and the dress allows access to the stomach through a hidden zip underneath the outer layer. “I don’t use buttons, everything is snap fastenings, to help people with reduced dexterity. I try and make sure all the seams are flat from a sensory point of view, and there are a lot of considerations, generally, across the board.” The collection also includes seated trousers specifically designed for wheelchair users, and all of the pieces are created to be attractive as well as functional – something that is important to Victoria. “The focus is on dignity and style”, she said. “When I first started looking into [adaptive clothing] I saw how ugly it was, and I thought it was terrible that was the only choice. I wanted to create what looks like ‘everybody else’s clothing’. “I subscribe to the idea that everything
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Unhidden pricing ranges from £55 for a wrap top, to £70 for twill trousers and £90 for a double layer dress. Each piece is currently made to order, and Victoria hopes that when she moves to making the clothes in large batches, as the business grows, the price point will reduce.
is universally designed, so the range isn’t just for people with disabilities, it’s for non-disabled people too.” It’s not just for adults either. Unhidden will launch an adaptive clothing range for children, in collaboration with Paw Patrol, before the end of the year – and a SpongeBob SquarePants collection will follow in 2023. With a focus on sustainability, all of Unhidden’s garments are made from ‘deadstock’, which is excess cloth from other retail companies that would otherwise go to landfill. And Victoria is working hard to use the business as a platform for change when it comes to representation. “I chose the name ‘Unhidden’ because representation of the disabled community is so bad. We are literally hidden away, and essentially segregated. The brand
is very much about taking that back and saying ‘we won’t be hidden anymore’. “Unhidden is about more than just fashion. It’s about raising awareness in the industry. It’s the first adaptive brand to join the British Fashion Council, and every time I talk about Unhidden, I’m advocating disability inclusion.” Victoria also lives her values as a brand ambassador for a modelling diversity charity, and as co-founder of 'No Comment Required', an ethical slogan clothing range focusing on positive representation for people with mental health issues and disabilities. Her future plans include the launch of a not-for-profit training arm, with workshops to teach people with disabilities and chronic health conditions how to make their own clothing alterations. Victoria runs Unhidden alone,
Victoria Jenkins
and admits that managing the demands of the business and her advocacy work alongside her health conditions can sometimes be a challenge. But speaking to Emphasis fresh from featuring in a Kurt Geiger campaign, and with more high-profile collaborations in the pipeline, Victoria is adamant it’s worth it. “This has all given me one hell of a purpose”, she added. “When I was working on clothes at Victoria Beckham, they were beautiful clothes, but who was I really helping? “Unhidden has helped me realise I still have value, as I spent so long [with my health conditions] just trying to survive, rather than thinking about a future career. We can do an awful lot more than the world thinks we can, and I’m quite proud of that.”
“Every time I talk about Unhidden, I’m advocating You can find out more about Unhidden and see the full range at www.unhiddenclothing.com
disability inclusion”
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fm
Zac Gunn was listed for a lung transplant in the summer of 2021 and his family are doing their best to live full lives while they wait. His mother Ashley told us why…
the call Waiting for
Zac, who is four, was diagnosed with pulmonary hypertension at the age of one. He lives with his parents Ashley and Gordon, and five-year-old brother Jacob, in Motherwell in Scotland.
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familymatters
W
e were told that Zac would need a double lung transplant just over a year ago and for the first few months it was really hard. I would just sit and wait for the call, not feeling like I could live my life. I was scared to do certain things, like go out for dinner with Gordon, in case it came then. It felt irresponsible. But now, a year down the line, I’ve realised we need to live our lives as much as we can. As a family we’re all living through the journey; I know we’re still going to get the call, and we all need to be happy. We have a bag ready to go just in case, and we’re raring to go whenever the call comes, but if you’ve not got a happy mum and dad then you’re not going to have a happy child. That’s what I keep saying to people – you need to strive for a happy life. Zac knows that he’s going to get new lungs and the two boys know exactly what’s going to happen. Gordon and I have been very honest with them, and we talk about it all the time. Zac is so excited for it; he can’t wait to stick on his backpack and go down to London for it when the time comes. Zac is charismatic, cheeky, and funny. He is so resilient and really is a force to be reckoned with. As adults, we couldn’t go through what he does. Just like his brother, he needs to understand that there are rules; sometimes that’s hard because he’s a typical four-year-old and likes to test the boundaries, but I guess that’s why he’s such a loveable rogue. I cannot wait until his new lungs mean he can be out playing all day with his brother and running around. Jacob absolutely worships Zac. He looks after him, he knows when the meds are due, and I’m just so proud of the two of them. We travel from Scotland to Great Ormond Street in London every three months with Zac, and Jacob goes to stay with my mum. As a family, you deal with it, but as a sibling, it’s another kettle of fish. He smashes it though. We did as much as we could with them over the summer holidays. We can’t go swimming because of Zac’s Hickman line, and we can’t go abroad in case the
Off icially a ‘child of courage’
In June this year, Zac was given a national bravery award in recognition of his strength. The youngster walked the red carpet with his parents and brother at the Daily Record Pride of Scotland Awards, where he was presented with the ‘Child of Courage’ accolade. Mum Ashley said: “The evening was absolutely magical. It was beautiful, and although Zac and his brother Jacob are superstars in our eyes, other people got to see how amazing they are too. I felt like the award was for both of them, as Jacob deals with a lot too.” The Pride of Scotland Awards celebrate ordinary people doing extraordinary things, and sees awe-inspiring Scots being recognised for their outstanding achievements. “As amazing as it was to see Zac win this award, it would be a million times better to get the phone call to say there are lungs available. I just need people to know how rare it is to get a new set of lungs and how much we need them.” call comes, but we went to Flamingo Land and stayed in a caravan, we went to Glasgow for the day, and we just did as much as we could. It’s difficult to plan things too much but whatever chances we are given, we take with both hands. I’ve always been signed up to donate my organs myself but naively, I didn’t think kids would ever need to go through this. I’ve been at Great Ormond Street with Zac when children have come in for heart and lung transplants and I’ve seen the difference in their lives. It’s a game changer, and how phenomenal is it that one child could potentially save another eight. That in itself is absolutely beautiful.
Ashley spoke to us about the family’s situation in the summer of 2022. You can find out more about organ donation, and transplant in children, at www.organdonation.nhs.uk
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Behind the
job title
Joe Newman is training to be a specialist in respiratory medicine, and following a sidestep during the pandemic, he is also a Clinical Research Fellow dedicated to making a difference in PH. Working at the shiny new Heart and Lung Research Institute in Cambridge, Joe combines clinical expertise from Royal Papworth Hospital with research at the University of Cambridge – all as part of his PhD. We caught up with him to find out more…
“The most rewarding thing for me is when I can actually see research make a difference to a patient’s life.”
AUTUMN/WINTER 2022 emphasis 52
n a m w e N e Jo What does a ‘typical’ day look like for you? (If there is such a thing!)
Can you tell us what led to your work in the field of pulmonary hypertension?
Surprisingly perhaps, it was the pandemic. I had been a hospital doctor for seven years, working with patients every day, but then for the first time in my career, we had a new serious disease in COVID-19 that we had no idea how to treat. I got involved in helping to find patients willing to participate in a drug trial called RECOVERY and soon after, I started working in interstitial lung diseases (lung scarring or inflammation) at the Royal Papworth Hospital. Some of these patients went on to develop what we refer to as Group 3 PH. My desk in our big open plan office was right next to the pulmonary hypertension team, who always seemed to be having lots of interesting discussions.
How did that bring you to your PhD?
I was lucky enough to then start a Clinical Research Fellowship specifically in COVID-19 at Royal Papworth. This included vaccine studies, a follow-up clinic, and looking for a possible link between the blood clots seen with
COVID-19 and Chronic Thromboembolic Pulmonary Hypertension (CTEPH). My supervisor is a PH specialist and researcher who encouraged me to join his research team to undertake a PhD to apply some of the lessons learnt from our COVID-19 research work to PH. This has been a great move! Medicine is a perfect blend of a career in applying science to work with and help people. I didn’t imagine I’d be a researcher though, even as recently as a couple of years ago.
What’s keeping you busy at the moment?
Recognising the move (driven by the pandemic) of delivering more healthcare remotely via the internet and phones, we’re looking at whether clinical trials in PH can also benefit from this shift. So rather than patients having to attend hospital regularly for monitoring or to see if a drug is effective, we can collect the same information via an app – including questions on quality of life, exercise tests and eventually even things like blood tests. We’re working closely with a technology company and the PHA UK who have helped us co-design aspects of this research with patients. Keeping our research as patient-centred as possible is the leading principle.
It’s fairly varied and mainly officebased at the moment as our project is nearing the end of the set-up phase. So, lots of Zoom meetings, writing documents, attending conferences and in my case, trying to catch up on reading over 30 years of research in PH – not an easy task! As a team we’ve recently moved into the new Heart and Lung Research Institute in Cambridge which is really exciting. It is set up with laboratories to understand the biology of disease right through to our Clinical Research Facility in which patients can take part in drug trials – and everything in-between.
What aspect of your job do you enjoy the most, or find most rewarding?
As with clinical medicine, I enjoy the team element of research and how professionally diverse our team is with scientists, doctors, nurses and trial coordinators all working together to develop discoveries in the lab into to treatments for patients. We have so much to learn from each other and as a team we are greater than the sum of our parts. I enjoy actively bringing people together, as we’ve done with our collaboration of patients, researchers, doctors, the PHA UK and tech companies. This links in to another interest of mine; medical education – training medical
AUTUMN/WINTER 2022 emphasis 53
“I have been struck by how collaborative PH research in the UK is… as team we are greater than the sum of our parts” students, junior doctors and other colleagues, encouraging them to get involved with research too. The most rewarding thing for me is when I can actually see research make a difference to a patient’s life.
Who or what inspires you in your work?
Of course, patients are a very powerful reminder of why we are doing what we’re doing. I also have to mention here my supervisor (boss) in Cambridge, Dr Mark Toshner, who I’m sure is well known to many of you in the PH community. He is a daily inspiration as someone who juggles many different jobs simultaneously – researcher, doctor, and lecturer. Mark has made (and will continue to make) a huge difference in the field of both PH and COVID-19 medicine through coming up with big ideas and then making them happen.
What do you think PH research does well, and what could it do better?
I have been struck by how collaborative PH research in the UK is. As it is a rare disease, the community is tightknit, well established and highly active. When I attend national meetings there is a sense that everyone is keen to work together on projects. An area that is a particular interest of mine, is thinking more about how we involve patients and their loved ones in shaping how we do research. How does a trial impact on the patients who volunteer to take part? What can we measure that most accurately reflects how patients feel and what they can do? We need to work closely with patients, carers and the PHA UK to continue to co-design research into the future.
AUTUMN/WINTER 2022 emphasis 54
What excites you about research in the field of PH?
I am most excited about using the technology that many of us carry about every day to help understand PH in clinical trials – smartphones, wearables devices, apps and so on. This gives us a much better picture of the impact on patients’ lives whilst not placing a burden (time, cost, stress) on them needing to travel into hospital to undergo tests. These digital and remote tools will undoubtedly be an important aspect of future healthcare and we are working to understand how best to use them. But again, it needs to be easy to use and designed alongside patients. I appreciate that this technology is not always the best solution for everyone, so we also need to think of other innovative ways to include all patients who would like to take part in research.
Finally, when you do get some time off, how do you relax outside of work?
We are lucky enough to have two wonderful nursery-age daughters at home, so my wife thinks that I come to work to relax (!). Having a fulfilling family life is very important to me and a daily reminder of the need to balance work-life commitments. Increasingly, post-pandemic and with a young family, I find that I value more the simple things in life. Walking the dog (our whippet Lyra) in rural Cambridgeshire helps clear my head and keeps me happy.
These people have all had their lives transformed by organ donation
Hilaria
Olivia
Yuri Max
Right now, more than 7000 people are waiting for a transplant to change their lives. As an organ donor you could save up to nine lives and transform many more by also donating tissue. Add your name to the NHS Organ Donor Register, and let your family know what you’ve decided.
Visit organdonation.nhs.uk Use the NHS App or call 0300 123 23 23 @nhsorgandonor
g n i s i a r d n Fu
We are so g rateful for (and im pressed by !) all the brill iant ways our suppor ters have raised mon ey over the last few mo nths. Here are ju st some of the m…
S U C O F
Tea party raises smiles and funds in celebration of Keir
Great north fundraising from the Great North Run We were blown away when friends and family of our cover star Sophie Gloag hit a total of over £18,000 in sponsorship for taking on the Great North Run in September.
Calling themselves ‘Sophie’s squad’, the group from North Yorkshire took on the iconic half marathon in eye-catching t-shirts, flying the flag for PH whilst pounding the Newcastle pavements.
17 miles with 17 friends When Dan Huddlestone completed a 17.5 mile walk in memory of Kelly Graham, it was the furthest he’d ever managed on his prosthetic leg. Dan was joined by 17 others from the Winston Churchill pub in Bradford, and together the group trekked from Shipley to Skipton whilst reminiscing about happy times with Kelly. His employers Drive DeVilbiss Healthcare Ltd donated £500 in support of the challenge, and he raised a further £220 himself. Dan said: “I felt really good when I’d finished, and it was for a brilliant cause. I was proud of myself for walking so far, but I’ll be getting taxis everywhere from now on!”
The walk was part of a wider charity event at the pub, which included a raffle and tombola. It was organised by Dan’s wife Melissa, Kelly’s best friend, in celebration of her life. WINTER 2019 emphasis AUTUMN/WINTER 202222 emphasis 56
Rain failed to dampen spirits at a garden tea party held in memory of Keir MacGruer, who died in 2012 at the age of just eight. The event in Inverness was held on 16th June, on the day he would have turned 18. The theme was Keep a smile on your face for Keir’s 18th, in recognition of his positive affirmations, and over £3,300 was raised. The tea party featured yellow tablecloths, sunflowers, finger food, a raffle and a giant cake with one of Keir's artworks, 'Monster Goblin', printed on it. His mother Angela Cran said: “We wanted to do something positive to celebrate what would have been such a special day in Keir's life. We do try to keep a smile on our faces, as he would have wanted.”
GREARTT! EFFO
Jamie Atherton and his friend Hamish took on the Three Peaks Challenge in memory of Will Acres. The pair scaled the three highest mountains in the UK, all within 24 hours, to raise over £2,000. The Wharncliffe Arms pub in Sheffield raised £2,000 from an autumn harvest festival auction, and landlady Bethany Hartley hand-delivered the money to our office. She’s pictured here with her son Billy, and the PHA UK’s Shaun Clayton.
Dave Englefield was joined by daughter Katie for a skydive from 15,000 feet, raising money in memory of his wife Sue.
Shelley Higham and her husband used their tenth wedding anniversary party to generate funds and awareness, with a collection box and leaflets about PH.
Friends and family of Cas Lawson held an afternoon tea party, sharing stories and memories of her, and raising £1,600. Nerys Jones and her husband held an open garden event at their home in North Shropshire, enabling people to enjoy their beautiful outdoor space in return for donations.
mp u j e h T “ ing t a r a l i h was ex omething and s ver forget” e I will n for our intervieiwck,
e tw he pag en Bes Turn t orter Steph dive for upp sky . with s ompleted a mmer who c e over the su f his wi
me fundraising so o d to e d ci e d w if you s on 01709 761450 Please let us kno u ll ca , rg .o k u a h ffice @p for us :-) Email o or Instagram book, Twitter or tag us on Face
AUTUMN/WINTER 2022 emphasis 57
g n i p m Ju fo r e i l u J
When Stephen Bestwick was gifted a skydive experience, he chose to turn it into a fundraising opportunity in support of his wife. With over £2,700 raised for the PHA UK, and unforgettable memories made, he told us it’s an experience he will treasure.
£ r e t r o supp ££
t h g i l t o p S
AUTUMN/WINTER 2022 emphasis 58
Stephen & Julie
A
skydive is something I’d been wanting to do for many years, but never got around to it. So I was so grateful to everyone at my company, BPW in Leicester, for donating the jump as my retirement present. I wanted to use the opportunity to say thank you to the PHA UK and give something back. I contacted friends, family, and old work customers for sponsorship and so many then asked about PH and Julie’s circumstances. It’s been important for me to thank every single person that donated. It’s been a fantastic and humbling experience. When we wrote details on our Just Giving page, about PH and the charity, I think people donating recognised that were raising funds for a charity that really needed the support. That’s been one of the greatest rewards from doing this; that more people now understand PH. The jump was exhilarating and something I will never forget. I was the second person out of the plane and had to sit in the doorway with my legs tucked under, before rolling out with the instructor. Suddenly we were in freefall, and all I could feel was the wind whistling around me. Then we dropped through the cloud barrier and my instructor deployed the parachute and suddenly everything became very quiet. I had the opportunity to fly the parachute and do some manoeuvres and it was a very gentle landing. I collected my certificate and was so proud; it really was a fantastic day. I think the biggest thing has been being able to give back and say thank you to the PHA UK for their support, because there were very dark days back in 2020 when Julie was diagnosed with PH. But the charity provided light, and we just knew they were there, so it was an easy decision to do this fundraising for them.”
Stephen's wife Julie helped him with the fundraising and supported him through the challenge. She said: “We started with an initial target of raising £500 but very quickly we saw that would be reached – so we raised it to £1,400 and then again to £2,000. I just feel that it’s been so good for people to donate so much during these times, and to also take the time to find out more about PH. Stephen eventually managed to do the skydive on 31st August, which was the fourth attempt as it kept getting cancelled due to bad weather. Even though there were a lot of clouds high in the sky, it was the perfect day. We went with friends, and it was fantastic to watch as spectators. I am so proud of Stephen and how much has been raised for the PHA UK. When I was diagnosed in 2020, I was lost. I didn’t know what PH was; but the information they provided, and the stories of others they shared, has all been so encouraging. It made me realise that it’s not all black. I’m thankful for everything they have done, and to everyone who has supported them by sponsoring Stephen.”
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We spoke to Stephen and Julie about their fundraising via a recorded chat on Zoom. You can watch our video, including footage of the jump, by scanning this code with your mobile phone. AUTUMN/WINTER 2022 emphasis 59
PHAUK
Specialist support from someone who understands
LISTENING
LINE
Our Listening Line support service gives you dedicated time with a PH professional to discuss your worries or concerns. • Free and confidential • An impartial listening ear • Available to all PHA UK members, family and friends too Talking to someone who already understands PH means you don’t have to explain your condition first.
Find out more or book an appointment by emailing listeningline@phauk.org or calling 01709 761450 Appointments can also be booked via our website at www.phauk.org
Calls take place with Paul Sephton, a former clinical nurse specialist in PH. Paul has many years of experience supporting people affected by pulmonary hypertension, both in a clinical environment and as part of the PHA UK team. “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
This is not a formal counselling service and it is not designed to replace clinical advice from your specialist centre team.
Spread the word!
Not yet a member? Join our PH family for free today Be part of a 4,500-strong national support network
Are you living with PH, or do you have friends and family who are? We’re here to support people like you. Join today and benefit from: • Support and advice • Helpful printed information & resources • Emphasis magazine delivered to your door • Free access to financial advice from qualified professionals via our partnership with Turn2Us • Fundraising ideas and guidance
Being part of the PHA UK also enables you to participate in important research, and our friendly office staff are just one call away when you need advice. Join our PH family and you’ll be joining 4,500 members in a unique network of support and inspiration.
Join FREE today www.phauk.org 01709 761450 office@phauk.org
Andlly... fina
Even MORE of this magazine!
Don’t forget you can read all back issues of Emphasis online. Head to www.phauk.org where you’ll find every issue of Emphasis that’s been published since 2015. That’s eight years of reading! Want another copy? Extra printed copies of the latest issue are available to purchase from our online shop for £3.99.
Scan here to go straight to the back issues >>>>
Your next issue of Emphasis will land in the spring We’re back to four issues through 2023 so look out for your next edition during the first quarter of the year! We’ve already got lots of exciting content planned, and as always, if you’d like to be involved you can contact us using the details on the right
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