AUTUMN 2021
The magazine for supporters of the PHA UK www.phauk.org
#Hear Our OurVoices Voices
PH Awareness Week is back
Studying with pulmonary hypertension
Emma’s university experiences
Walking on
Life after pulmonary endarterectomy surgery
Plus... Real life stories, research news, interviews and more
Our daughter, our strength One family’s journey with PH
Leaving work behind Making the decision to stop
Hello Welcome to your Autumn issue of Emphasis. I hope this message finds you well and enjoying life, as - finally - we start to move forward from the last 18 months dominated by COVID-19.
W
e know the pandemic has had a huge impact on our community, and the sheer number of responses to our research into the issue proves that. We had over 1000 questionnaire completions - the highest ever to a PHA UK survey - and you can find out more about what happens next on page 10. September marks the start of new terms at schools and universities around the country, so it’s appropriate timing to bring you the experiences of a student who learned a lot about er condition during her degree. See page 35 for Emma’s story. When you have a condition like PH, there can be hard decisions you must make - and one of them is whether you are able to continue working. There is a lot to consider in this area, and we hope our special feature, beginning on page 21, is helpful. Thank you to everyone who shared their experiences for this section. As the final quarter of 2021 begins, we’re looking ahead to November and our annual PH Awareness Week. We know that many people shielding during
the pandemic, including those with PH, felt ‘forgotten’ by the government and at times, by society too. This year’s theme, #HearOurVoices, aims to provide a platform for us all to make ourselves heard. You can find out how to get involved in PH Week on page 12. Finally, you’ll have noticed a special supplement in the envelope with this magazine, asking you to pledge your support for our campaign to ensure everyone with PH gets help to achieve the best quality of life. Specialist rehabilitation is so important, but it’s difficult to access for many. Please stand with us on this issue by completing the form enclosed or at www.phauk.org I hope you enjoy this bumper edition of Emphasis.
Iain Armstrong Chair of the PHA UK media@phauk.org
As the final quarter of 2021 begins, we’re looking ahead to November and our annual PH Awareness Week
I’m supporting PH Awareness Week 2021 #HearOurVoices
Turn to the back cover for a PH Week photo prop and get snapping in November! AUTUMN 2021 emphasis 3
12
PH AWARENESS WEEK IS BACK How to get involved
21
LEAVING WORK BEHIND When PH makes it impossible to continue
CONTENTS AUTUMN 2021 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
38
WALKING ON How Malcolm came to a decision about CTEPH surgery
Living with PH... 26 My life on IV medication
Mother-of-two Rinku Puri shares her experiences of living with a line
35 Studying with PH
Emma Ferguson achieved a first-class honours degree and her time as a student taught her invaluable lessons about managing her PH too
44 Moving mountains… One stone at a time
Cindy Regalado hiked 1001 metres up a peak in Snowdonia – 14 years after being told she only had months left to live
50 Keeping up the conversations
Why we need to keep talking about palliative care in PH
52 Delving into diuretics
Consultant Pharmacist Neil Hamilton on the important role of ‘water tablets’ when it comes to managing PH
33
DESIGN WITH MEANING Member Kevin’s sculpture to raise awareness of organ donation
48
OUR DAUGHTER, OUR STRENGTH One family’s journey with PH
54
THE INTERVIEW Meet Clinical Nurse Specialist Javier Jimenez
Latest News...
Regular Features...
08 Promising results for world-first anxiety
06 Emphasis Exchange
programme
A PHA UK-supported study has tested the world’s first self-help intervention for people with PH and anxiety.
15
An update on our major piece of research into how COVID-19 has affected the PH community
17
10 PH and the pandemic 16 Your right to rehab
Our new campaign calling for specialist rehabilitation access for everyone with PH
29 Shortlist success for emPHasis-10
PHA UK chair Iain Armstrong has been shortlisted for a major award for his development of the emPHasis-10 quality of life questionnaire.
41 Introducing Eva and Joy
The newest members of the Royal Brompton’s specialist PH team
News, updates and a special poem
A window to our world
The new regular column from the PHA UK’s Shaun Clayton
Ask the experts
Your questions answered
31 Green Leaf Crew
Comic strip fun and advice from Kaylee and Emily in our special pull-out for children
58 Fundraising Focus
Leaping from planes, multiple 10ks and even car racing – you’ve been supporting us in some wonderful ways!
AUTUMN 2021 emphasis 5
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Can you spare five minutes?
Pulmonary hype rtension can affe ct the lives of partners and fa mily members to o, but we know this import ant impact is ofte n ignored. Researchers at Ca rdiff University ha ve created a simple question naire to measure this impact, but they need yo ur help to test it. They are asking for people with PH , and their partners / family members to spar e five minutes to co mplete a survey at https: // bit.ly/3rN G5qt Questionnaires m ust be completed by the end of Septembe r. The hope is for th is Family Reported Outcom e Measure (FROM -1 6) to be used routinely to better understand an d care for the health an d social needs of pa rt ners and families. We’ ll keep you post ed on developments.
“I am so glad I pushed myself out of my comfort zone”
marked her birthday Member Victoria Sant down the Spinnaker by abseiling 100 metres Tower in Portsmouth. gnosed with She said : “Since being dia , I have made sure I pulmonary hypertension rtunity. Every birthday try and grab every oppo use it's another year I means a lot to me beca family and friends, get to be here, be with my t adventures. Even and experience differen e whole way down the though I was terrified th shed myself out of my tower, I am so glad I pu thing new.” comfort zone to try some
ebsite w r u o r o f eck out A new look hauk.org to ch
.p Head to www r! esher e v o e k a m a gree it’s now fr a l ’l u We’ve had o y e p o h for you website. We that it’s easier y, tl our new look n a rt o p im ments dern, and have any com u o y If r. and more mo fo g ’re lookin ce @phauk.org ffi o il a m find what you e se a nges, ple about the cha AUTUMN 2021 emphasis 7
Promising results for world-first anxiety programme A PHA UK-supported study has tested the world’s first self-help intervention for people with PH and anxiety. Up to 50% of people with pulmonary hypertension experience anxiety that affects everyday life, but we know it’s not always easy to get the help you need. That’s why, in collaboration with leading UK researchers, we helped develop and test the world’s first self-help programme aimed specifically at those with PH. The four-week programme, consisting of a series of workbooks based on Cognitive Behavioural Therapy (CBT), was the brainchild of trainee psychologist Dr Gregg Rawlings. He was supported by Professor Andrew Thompson of Cardiff University, and Professor Nigel Beail of the University of Sheffield, and the aim was to develop tools that patients can access straight away and use in the comfort of their own home.
About the self-help programme (known as the ‘intervention’)
The intervention consists of four workbooks, each focused on different topics to give people the skills and insight to better manage their anxiety. The series, titled 'Overcoming Worry & Anxiety', is designed to be completed over a period of four weeks. The content is based on Cognitive Behavioural Therapy (CBT), which helps people to change their unhelpful thoughts and behaviours and develop better ways of coping. CBT is proven to reduce anxiety in many people, including others with long-term health conditions.
How the study worked
The aim of the study was to test how effective the intervention is in helping people with PH manage their anxiety. 138 people with PH were recruited to the study from the UK, Canada, America, India and the Netherlands, and divided into two different groups. One group was asked to complete the self-help programme, whilst the other did not. Both groups answered questions about their anxiety symptoms at the same points. Data was collected over an eight-month period between August 2020 and April 2021. You can see the results on the page opposite .
AUTUMN 2021 emphasis 8
What happens next?
Although further research is needed, it’s clear that we now have a valuable way of helping people with PH manage their anxiety, and we are keen to help as many people benefit from it as possible. To enable further evidence of the intervention to be gathered, we are working on the next stage of the study which will include making the programme available to all PHA UK members for free. If you would like to be among the first to hear when you can access the programme, please email office@phauk.org with ‘Overcoming Worry & Anxiety’ in the subject line.
The results
100%
of people who completed the programme reported that it helped them with their anxiety
88
%
said they felt more in control of their anxiety
92%
felt that their friends and family would benefit from the intervention
100%
of participants would recommend the intervention to another person with PH
90%
of participants said they valued that the intervention was focused on PH
A word from Dr Gregg Rawlings, leader of the study
“There can be numerous barriers to getting support for anxiety in PH. This could be because of long waiting lists or services not being available, or because people feel uncomfortable talking about their difficulties, or worried that their PH won’t be understood. For these reasons, we wanted to develop an intervention that people can access immediately and complete in the comfort of their own home. While more research is needed and it is still too early to say this intervention is effective for anxiety in people with PH, the results are very promising. It is great that the findings are consistent with what we expected and that participants experienced a number of benefits from taking part.
We developed the intervention with the PHA UK and other experts in PH, experts in CBT, and people living with PH and their caregivers. We took this step to make sure that the information in the programme, and strategies that participants learned, were specifically relevant to the challenges that people with PH experience. It is encouraging that 90% of participants valued that the intervention was focused on PH. When developing the intervention, I learned a great deal about PH from conversations with healthcare professionals, and reading books, research papers and information online about the condition. However, it has been invaluable to listen to the first-hand accounts of people living with PH and the people who support them. Last year, supported by the PHA UK, I reviewed the personal experiences of over 1900 adults living with PH from around the world. Among the experiences that struck me was the huge disruption that developing PH had caused people in their lives. With this came great uncertainty, change and loss, which naturally many people found difficult. Closely related to this however was the strength and courage that was reflected in how people spoke about coping with the impact of PH. This ranged from the ongoing management of everyday activities that we often take for granted, to major life-changing decisions. In the same way that people with PH often need to take additional measures to care for their physical health, they may also need to take more care of their mental health. This is particularly because they are at a greater risk of experiencing psychological and emotional difficulties related to living with a long-term health condition. I would like to take this opportunity to thank the PHA UK. Their expertise, wisdom and insight has been vital in making this project possible and successful.
I also wish to thank you, as members of the PHA UK, including those who took part in the study. Thank you for your time and allowing us to learn from your experiences with the aim of improving the support that is available.”
AUTUMN 2021 emphasis 9
PHA UK
research
Living through the pandemic
with PH
Our surveys to understand the impact of the COVID-19 pandemic on the PH community have now closed, with over 1000 responses received the most we’ve ever had. We asked for the experiences of people with PH, their loved ones and householders, and parents / guardians of children with PH too. The huge response rate shows just how much our community wants to be heard. Data analysis is currently taking place, and the headline findings will be shared next month. We are currently carrying out further qualitative research via telephone interviews, with a view to launching a comprehensive online report later in the year. Thank you to everyone who shared their experiences in this important piece of work. Your voices, along with so many others, will now be part of history.
AUTUMN 2021 emphasis 10
OVER
1000 RESPO NSES
We’d love to share the findings with you! Keep an eye on our website and social media channels for news of the results. And by signing up to our monthly e-newsletters, you’ll receive the findings direct to your inbox! Sign up via the homepage link at www.phauk.org or email media@phauk.org with
'Yes please’ in the subject line (no need to write anything else).
t of A snapshom s t n e m o c your some ll selection of This is a sma ts ds of commen of the hundre surveys : shared in our
“The pressure of having such a ely unique, vulnerable child is extrem I overwhelming at times, something ic.” never really felt before the pandem “I do not go out much anyway so shielding didn't make a lot of difference to me.”
“Repeat presc riptions were difficult to get hold of durin g some parts of the p andemic” around my y r r o w e h T “ to caused me spouse has ntal health develop me rrently cu issues. I am ith OCD suffering w om all the s fr which stem ut keeping o b a g in y r r wo ” e to her PH u d fe a s r e h
“Since covid, I feel like I have lost my identity a little” “The pandemic has cr eated uncertainty and fear which fuels the sense of anxi ety and loss of control over my life.”
d covid “My sister [with PH] ha tter and came through it be mily” than the rest of the fa “I think it was correct to ask clinically extremely vulnerable people to shield but I feel little w as done by the government to accom modate us as they eased restrictions ”
t “I'm still paranoid, bu more resigned to it.” “In some ways my daughter has thrived and in some ways she has struggled”
n hold was “To put life o g for me a very big thin my get to accept and head around”
“My general health and PH have worsened only because of the lack of exercise”
has been s P G g n i s s “Acce mbles” a h s e t le p a com
“I made a deli berate conscious cho ice to come out of the [pa ndemic] situation in a better state than when I s tarted.”
demic “The pan e more m has made out my afraid ab h.” alt future he
“I appreciated being classed as clinically extremely vulnerable as it has helped me to protect myself” “[The pandemic] has validated my thoughts on being a burden”
nxious I am a w o h d e is r p “I am sur about again” d n a t u o g in about gett AUTUMN 2021 emphasis 11
Hear
our voices PH Awareness Week is back! Join us in the first week of November to help people understand more about pulmonary hypertension
21 # 21liln enge C ha
Here are a few ideas, but the only limit is your imagination! • Climb the stairs 21 times during PH Week • Walk 2.1km every day for 21 days during November • Stay silent for 21 minutes or 2.1 hours (great for kids!) • Jog 2.1 miles every day during PH Week
The PHA UK turns 21 this year and to celebrate our coming of age in 2021, we’re inviting you to take on a special #21in21 fundraising challenge.
• Bake 21 buns and sell them to family and friends (great for kids!)
Complete a challenge around the number 21, ask for sponsorship, and mark our anniversary by helping us to support people with PH in years to come.
• Sing 21 songs (great for kids!)
AUTUMN 2021 emphasis 12
• Cycle for 21 minutes on an exercise bike (either all at once or over a few days) We have some amazing new fundraising packs to support your challenges and everyone who takes part will receive a PHA UK medal. Find out more and sign up at www.phauk.org
Pause for PH
Mark the start of PH Week by taking 60 seconds to be still and silent, and draw strength from knowing that others in our PH community, all across the UK, will be doing the same. You might want to think about someone you love, give thanks for the care you receive, or simply take a deep breath and remember what you’re phighting for.
Please let us know if you plan to pause for PH by completing the short form at www.phauk.org
60
Join us as we ‘pause for PH’ together at midday on Monday 1st November.
ONDS C SE
Express yourself We can use our voices in more ways than one. Express yourself through written words, art, film, music, dance, photography - or anything creative that means something to you. You could: • Write a poem or blog about any aspect of life with PH • Draw or paint something or omeone you love (great for kids!) • Take a photograph of a special place or person • Write an open letter to someone - yourself, someone you miss or love, the NHS, or anyone of your choosing • Make a short film on your phone • Record yourself singing a song, playing an instrument, or completing a dance routine (great for kids!) • Sing 21 songs (great for kids!)
Your expression doesn’t have to irectly relate to PH. We are more than our health conditions, and this is about expressing who YOU are. Express Yourself is not just for those with PH either; we’d love to see expressions from relatives, friends, loved ones and healthcare professionals too. More ways to
get involved sion Please send your expres re over the page fo to media @ phauk.org be d Friday 22nd October an e we will share them onlin Week. ess throughout PH Awaren ill Everything you create w e at enjoy a permanent hom g, e.or www.phocusonlifestyl rt fo so others can take com them or draw inspiration from for years.
…or anything else that moves or inspires you! AUTUMN 2021 emphasis 13
Get snapping!
The back page of this magazine doubles up as a photo prop, so snap a selfie and make a statement by sharing it on social media during PH Week. Why not get your little ones and pets involved in the pics too?
ting r o p p I’m suwareness PH Ak 2021 Wee Voices ur #HearO
If you’re feeling camera shy, you could always display the sign in your window instead. We’ve got lots planned for our social channels so join the online conversations and don’t forget the hashtags!
#HearOurVoices #PHWeek21
Let us help you tell your story One of the most effective ways Contac of raising awareness of PH is by u s nowt ! sharing your experiences with your local newspaper and other media outlets. We can help you do this by contacting them on your behalf and guiding you through the process. Please email media@phauk.org or fill in the form at www.phauk.org as soon as possible if you would like to share your story in this way.
Together in real life With the lifting of restrictions, in-person events and gatherings are possible once again for PH Week. If you choose to hold a bake sale, quiz night, or any other kind of gettogether, we can send you plenty of materials and goodies to help. Just drop us a line at office@phauk.org
Look out for a series of special films, made with our members, which will be released during PH Awareness Week. Thank you to everyone who has kindly given their time to be interviewed in this way.
AUTUMN 2021 emphasis 14
t Visit www.phauk.org to find ou more about PH Awareness Week and how you can get involved. Got a question or idea? Email 761450 media @phauk.org or call 01709
£
££ b u y tem ptin a t to hgetlrea p
w o d n i Ato owur world ector of ir D , n o t y la C n By Shau e PHA UK h t t a t r o p p u S Membership
ow me, I’ve been working "For those that don’t kn ost ten years now, helping here at the PHA UK for alm rd, keep all the plates to drive the charity forwa we ensure we are doing all spinning, and, of course, ot mmunity. Here’s a snapsh can to support our PH co … er the last few months what’s been going on ov e making our website th We’ve been working on in following a huge spike best it can possibly be, 19 pandemic. I’m very traffic during the COVIDle turn to our site as a proud that so many peop ation, and the increase in source of trusted inform to look at how we can visitors has prompted us ce even better. Following make our online presen w.phauk.org now has a a complete overhaul, ww and refreshed content new look, new navigation . d what you’re looking for – making it easier to fin n, the new ‘suppor t’ sectio One of the highlights is r suppor tive tools and a central area bringing ou e we’re pretty proud of th resources together, and n too. improved search functio g a new and improved And we’ll soon be addin e line shop – so keep an ey clothing range to our on ch g designs! Do get in tou out for some eye-catchin s. ge k on these website chan if you have any feedbac ernet, we’ve seen a bit On the subject of the int ug forums about a new dr of chatter on our online ought it would be called sotatercept, so I th ht on this therapy. helpful to shed some lig st in class’ drug that is Sotatercept is a new ‘fir -based pharmaceutical being developed by a US at n. ‘First in class’ means th company called Accelero y, a completely dif ferent wa this therapy treats PH in ing development. so it’s potentially an excit
"Welcome to our n ew regular feature, where I’ll be you on what’s bee updating n inside your charity going on ."
t with what happens, bu I’ll keep you in the loop all final stages of trials and at the moment it’s in its re d a wall of non-disclosu the data is locked behin agreements. ank everyone for helping I wanted to personally th pact ent surveys into the im us by completing our rec ic. of the COVID-19 pandem d it ions was staggering, an The number of complet rk e to a piece of survey wo was the largest respons this side of the Atlantic. by any PH organisation o by the response we I was really hear tened to er o care for patients, wheth received from those wh ts. ren family members or pa that be partners, other will truly influence the I know that the findings ct in, from how you intera world of PH that we live you. we as a charity suppor t with healthcare to how ed with the steps we’ve I hope to keep you inform ch issue. taken in this column ea rway to prepare for Finally, work is well unde November. You can find PH Awareness Week in opposite, and we’re really out how to get involved to ng together with you all looking forward to comi this rare disease. spread the word about of just some of the work This is a brief overview of ently. You’ll find details that’s been going on rec e, roughout this magazin other PHA UK projects th you updated via our and of course, we’ll keep l media channels too. e-newsletters and socia AUTUMN 2021 emphasis 15
Pledge before 10th November
www.phauk.org
Your right
to rehab
We believe that everyone with pulmonary hypertension should have access to specialist rehabilitation.
Will you stand with us? Pledge your support for our new campaign to ensure everyone with PH gets help to achieve the best quality of life. e know that living with pulmonary hypertension can be challenging, which is why at the PHA UK we have always championed interventions that improve quality of life and boost wellbeing. For the last four years, we have helped to fund specialist physiotherapist posts that produce evidence of the value of rehabilitation for people with PH. These physios, along with their colleagues in the service, have helped hundreds of patients to manage their breathlessness, get fitter and stronger, and enjoy a better quality of life. There is mounting evidence that moving more (in the right way) helps some of the physical symptoms of PH, as well as easing mental health challenges like anxiety and depression -which we know can go hand-in-hand with a long-term condition like PH. But people with PH need help with this, via rehabilitation from specialist physiotherapists. That support comes at a cost, and we need to be able to justify the investment to NHS commissioners. That’s why we are launching a campaign for rehabilitation to be
AUTUMN 2021 emphasis 16
made available at ALL the specialist centres in the UK, via specialist physio provision. We also want to ensure that community pulmonary rehabilitation programmes are accessible to those with PH, as well as more common respiratory conditions such as COPD. Equity of access is important, and it’s not happening right now. We can shout from the top of our lungs, but it’s the backing of the PH community that will make a difference to this campaign. If you agree that specialist rehab for people with PH is important, and worth investing in, please pledge your support by completing the short form on the back of the supplement sent with this magazine, or at www.phauk.org Please pledge before 10th November. Anyone with a connection to PH can pledge – patients, partners, carers, loved ones and health professionals too. Let’s stand together to make a difference. Find out more about this campaign, and hear from patients who have benefitted from specialist rehab, on our website.
What do we mean by ‘rehabilitation’? Rehabilitation is the process of helping an individual achieve the best quality of life, independence and level of function with PH. Your ri
t to rehgh ab
We belie with pu ve that everyo should lmonary hype ne ha specia ve access to rtension list reh abilitat Will yo ion. u
stand w ith
us?
Turn over support to discover mor using the e abou t our form on the back campaign and page, or pledge your at www .phauk.o rg
Special supplement with this magazine
W
NEW!
Experts ASK THE
The UK has an outstanding national network of PH specialists and our new regular feature makes the most of their expertise…
Paul Sephton
Rachel Crackett
Research and Development Coordinator at the PHA UK and former Clinical Nurse Specialist in PH
Duncan Grady
Clinical Nurse Specialist in PH, Freeman Hospital, Newcastle
MEET THIS ISSUE’S EXPERTS
Highly Specialist Pharmacist for Pulmonary Vascular Diseases, Royal Papworth Hospital
Dr Gregg Rawlings Trainee Psychologist, University of Sheffield
Read their professional advice on oxygen, painkillers, procedural anxiety, and hospice care, over the page…
AUTUMN 2021 emphasis 17
“My wife has been told she would benefit from hospice services, but I didn’t think she was that bad. It’s making us all panic that things are worse than we thought. What can we expect?” There is a common misconception that hospice care is only for people who are dying, but this is very far from the truth. Hospice care (a form of ‘palliative’ care) is for anyone with a life-limiting illness, but there is no timeframe on that. Being referred for hospice care does not always mean you are close to the end of life. With a focus on quality of life, hospices offer many services, including ‘day’ services focused on wellbeing – which can include complementary therapies like massage, arts and crafts activities, and support groups. Remote/online services
“I get a lot of headaches, but I’m not sure what painkillers I’m able to take. Do they interact with PH medication? I’ve not been diagnosed long so I’m a bit nervous about taking other drugs.” Most people will experience a headache at some point in their lives – they are very common and are usually not serious. There are over 150 different types of headaches – each with its own cluster of symptoms, causes and treatments. One of the most common types of headaches is a tension headache. This is usually described as a dull pain or pressure around the head and back of the neck and can be triggered by things such as stress, poor posture, dehydration or lack of sleep. Headaches can usually be effectively treated with simple painkillers. Paracetamol is a great choice because it does not interact with
AUTUMN 2021 emphasis 18
have taken place at many hospices throughout the pandemic. Counselling services are usually available too, and family members can also benefit from this support. Some people access hospice support for years, often in stints, and it can be reassuring to know it’s there when you need it. Services vary between hospices, but once your wife has been referred you will be able to have an informal chat with the staff there to find out what’s available and make a decision about whether it’s right for you. Before becoming a specialist nurse in PH, I spent many years as a nurse within a hospice. People were consistently surprised by how uplifting and positive the environment was and I would encourage you to keep an open mind.
Paul Sephton
Read more about palliative care on page 50.
any PH medicines, is widely available and is very safe so long as you keep within the recommended dose. Ibuprofen also does not interact with targeted PH medicines, but it may interact with other medicines you are taking (in particular medicines to prevent blood clots) and some people with certain health conditions should avoid it, so check with a pharmacist first. Drug-free ways to help headaches include rest and relaxation and drinking plenty of water. For tension headaches, some people find a gentle neck massage or a warm compress to the back of the neck and head helpful. Most importantly however, if your headaches do not resolve despite treatment, you are getting headaches frequently, or if they are much more painful than usual then please seek medical advice. As a footnote: Headaches can also be a side effect of medicines, including the specialist medicines used to treat pulmonary hypertension. However, only an unlucky minority of patients ever get any and they are almost always temporary and usually respond well to paracetamol treatment. Nevertheless, if you are getting regular headaches for more than a couple of weeks after starting a PH medicine then talk to your PH team – you might need a dose or treatment change.
Duncan Grady
“I’ve been told I might need to start oxygen therapy soon, but I’m concerned about how this might affect my life and what I can do or where I can go. What should I expect?” You will probably have to undergo an oxygen assessment to find out how much oxygen you will require and how long you will need to use it for. Some people only need ‘ambulatory oxygen’ which means you only need to use it to exercise and undergo activities. Should this apply to you, then small portable cylinders can be used for this purpose. These are usually carried like a backpack, but some people do find them heavy, so a little trolley is often a good idea. If you require long-term oxygen, then a concentrator will be needed in the home to provide the amount you need. The oxygen company in your area will
“I get really worried and worked up before any kind of medical procedure. Is this normal? Is there anything I can do about it?” Anxiety is a subjective experience, meaning how anxiety is experienced and what triggers it, will vary from person to person. Medical appointments and procedures can trigger our anxiety response and therefore it is very common for people to experience some degree of anxiety. It even has a name, procedural anxiety. The good news is, there are lots of ways to help manage anxiety in response to medical procedures. Coping strategies for dealing with general anxiety can be very helpful,
provide full education for use and the safety measures that you need to adhere to, for example, not smoking. The concentrator can be large and a little noisy so be mindful about which room you choose for installation. Oxygen shouldn’t stop you from doing what you want to do (other than perhaps swimming). You can take your portable cylinders with you, but you will need to be mindful of how long they last, and this will depend on how much you are prescribed (obviously the lower the rate, the longer the cylinder will last.) You can go on holiday with oxygen, however, there are some logistics you will need to sort out. It is much easier to holiday in the UK than going abroad. Ultimately, while it can be a little daunting to be prescribed oxygen and you might feel limited, most situations can be overcome with a degree of forward planning.
Rachel Crackett
such as relaxation, slow breathing, mindfulness, distracting yourself from unhelpful thoughts and sharing your worries with others. Planning can also be a good idea; for example, knowing in advance how to get to your appointment on time, packing your bag beforehand so you don’t feel rushed on the day and writing down questions you may have so you don’t forget them. Try not to over-plan though, because this can also be unhelpful and add to your worry. If you feel you are struggling with anxiety around medical procedures, please share your concerns with members of your care team. Although such conversations can be difficult at first, in the long term they will allow you and your care team to work together to help better manage your anxiety.
Dr Gregg Rawlings
You can read more of Gregg’s advice about procedural anxiety at www.phocusonlifestyle.org
Got a question for next issue? Send it to media@phauk.org and if your query is picked, we’ll find an expert to answer it in print.
AUTUMN 2021 emphasis 19
Can you help researchers understand
what causes PH A major study is trying to uncover the causes of idiopathic and heritable PAH, and more newly-diagnosed patients - and their relatives - are needed to help. The National Cohort Study of Idiopathic and Heritable PAH has been running since 2014, with the aim of understanding more about the triggering factors that lead to PAH and what causes disease progression. There is a genetic susceptibility associated with PAH and the study also aims to observe the impact of having a PAH gene mutation on the course of the disease over time. There are 16 months of the study left to run, and over 1000 patients, relatives and controls have taken part so far – but researchers still need more volunteers.
Who is needed?
Researchers are looking for patients who have been diagnosed with idiopathic or heritable pulmonary arterial hypertension (PAH) within the last 12 months, and their relatives.
What is involved?
Patients who volunteer for the study will be seen at their regular specialist centre appointment (no additional visits are required). Study bloods will be taken alongside the normal clinic bloods, and you will be asked to complete a questionnaire. You will be followed up after one and three years. Relatives who volunteer for the study will be invited to attend their closest specialist centre (which does not have to be the same one the patient attends). They will have bloods taken and non-invasive medical tests performed such as a walk test or an echocardiogram. They will be followed up each year and all travel costs will be reimbursed. If you are unable to travel to your local specialist centre then you may be recruited remotely and sent a saliva DNA test by post.
How to volunteer for the study
To put yourself forward for the study, you can either contact your specialist PH team or sign up at www.ipahcohort.com If you have any questions, please email cohortcoordination@medschl.cam.ac.uk or call 07880 584757. AUTUMN 2021 emphasis 20
“Without people volunteering, we will never be able to learn more about PAH and improve outcomes for our patients" Carmen Treacy Study Coordinator
Leaving work behind For some people with pulmonary hypertension, continuing to work can be difficult - but it’s not always an easy decision to leave. Aside from the obvious financial implications, giving up your job can mean a loss of routine, social interaction and sense of identity. On the other hand, it might protect your health and mean you have energy for other things in life. And of course, not everyone has a decision to make. For some, their condition means that employment isn’t even an option. In this special feature, we answer your important questions and hear first-hand from those who left work behind.
AUTUMN 2021 emphasis 21
n to take What does it mea ill health retirement?
ment) so called medical retire Ill health retirement (al e lac your private or workp means you can access health. pension early due to ill idence supporting medical ev You’ll need to provide pot ember that the pension and it’s important to rem se it’s bably be smaller, becau that you build up will pro se in value. had less time to increa as a take part of your pension You may also be able to s les e liv r 75 and expected to lump sum. If you’re unde ab be le serious illness, you may than a year because of p sum. ion pot as a tax-free lum to take your whole pens
so it’s es have dif ferent rules Dif ferent pension schem urs. the administrator of yo important to check with fore e your State Pension be It’s not possible to receiv due to ill health. your State Pension age, dent receive expert, indepen It’s important that you e early tak making a decision to financial advice before retirement.
a better option? Is voluntary redundancy cons,
up all the pros and It’s important to weigh get undancy pay you would including how much red ed to pay tax on it) . (and whether you’d ne a quick r push you into making Do not let your employe n laws r that anti-discriminatio decision. And remembe cause be ign ssure on you to res mean they can’t put pre of your illness.
Jayne Venables left work at her family’s firm as soon as she got her diagnosis of PH.
Bob Owens took ill health retirement from his job as a butcher, after dropping to part-time hours when he was diagnosed with PH. At the time of diagnosis I had just taken on a mortgage following a divorce, and I enjoyed my job and wasn’t ready, mentally, to give it up. I spoke to my specialist PH team and they were brilliant, suggesting I cut my hours down and speak to my boss about taking on light duties only. Luckily my boss was very understanding about my condition. I managed to keep working for a year and a half, but as a butcher [even with lighter duties] my job was still quite physical, and I was finding it too much. I had to retire through ill health at the age of 54, and my last shift was Christmas Eve 2018. I didn’t have a clue how to claim benefits, but once the DWP had seen my medical reports, they were quite helpful. To be honest I’d still like to be working, but I’m positive about my circumstances and have learned to accept them. AUTUMN 2021 emphasis 22
I was employed as an office manager and I worked until the day I had my provisional diagnosis, when I was admitted into hospital. I never went back to work; the job was a full-time role and even part-time wasn’t an option [because of my health]. I received full pay in the form of sick pay from work for 28 weeks, before transferring to statutory sick pay. This was obviously a cut in income and to compound issues, my husband had to leave work to look after me. We went from having a dual income to none. I had a couple of pensions that I managed to take early, at 45. These were at a lower rate, obviously, than they would have been if they had been able to run to full term. To be honest, giving up work was a relief. It had been very difficult and was only getting worse. At the end of the day though, guilt should not make a sick person stay in work. You only have one life.
Salina (right) with her mum
Salina Issory was diagnosed with idiopathic PAH in October 2017. She gave up her job as a project manager while she adjusted to intravenous medication. After being diagnosed I was put on oral medication and went back to work, on reduced hours. My employers were really flexible and supportive, but my condition started to worsen, and I was told I would probably have to start intravenous (IV) medication. I did my research, and after reading about the possible side effects I realised I wouldn’t be able to continue working. Giving up work was probably one of the hardest decisions I have ever made because at 32, I was thriving in my career. I had great colleagues and I was always thinking about the next step on the ladder. My mum and brother, who I was living with, helped me come to the decision. And I knew it was the right one when I started experiencing the side effects from the medication. I was ill with them for about a year and there was no way I could have worked, even from home. I had savings, and the support of my family, and I went onto Universal Credit. But I had to majorly cut down on my social life which is expensive in London - and without my savings I know I would have lost my car. After a year, when the side effects started to settle down, I decided it was the right time to start looking for work again. I’d lost part of who I was, and I needed to get back to work for the routine and my sanity as much as the income. My specialist centre supported my decision and I started actively looking for work again. I applied for lots of vacancies but only had three interviews over the period of two years. I do think the gap in my CV went against me, even though I included a section explaining the circumstances. It all worked out in the end, as I’ve now just secured a position as a full-time assistant project manager, on the basis that I can drop down to part-time if it’s too much. It’s important not to give up hope, but also to listen to your body.
Kate Parker* was diagnosed with idiopathic PAH in November 2020, when she was working as a personal assistant. Following advice from my specialist centre, I was off work for three months after my diagnosis. Five days before I was due to return, my line manager changed my job role, so I had an increased workload. Last month, I decided to take early retirement, as I simply could not cope with both work and my deteriorating health. My husband and I set up a spreadsheet and worked out our finances, and we realised we could afford for me to retire. We also decided my health was more important than my job. I will start receiving my state pension in a couple of years and I have taken a lump sum from my private pension to bridge the gap. I am currently trying to apply for Personal Independence Payments (PIP). There is nothing I miss about work. I have no regrets about the decision I made. *name changed on request
its What state benefed could I be entitlg? to if i stop workin
to will depend on your What you are entitled to . But if you are unable individual circumstances im cla to le ab , you may be work because of your PH P), (SS Statutory Sick Pay state benefits including ort Allowance (ESA) Employment and Supp or Universal Credit. or at www.phauk.org Our free benefits calculat to you. what may be available can help you work out
Read Salina’s full story at www.phocusonlifetsyle.org AUTUMN 2021 emphasis 23
What are my righ? ts to work flexibly Fiona Ballantyne took ill health retirement from her job as an administrative officer when she was diagnosed with PAH in 2019. My consultant advised me not to go back to work as I just wasn’t capable, and I was granted retirement a couple of months later. I worked out that by taking a bigger lump sum and a smaller pension, I was able to get benefits too. Once I had all the figures sorted out, I was a lot happier about the decision and knew that I would be ok financially. I don’t miss the work because it was getting to the stage where I hated the job, but I miss the people, the interactions, and going out every day. The routine was important and without it I feel a bit lost. Now, I’m just the person who sits on a scooter and can’t do anything. I miss being useful and I miss being good at something. Doing voluntary work from home has helped. I look after admin for the community hub up the road and I’m hoping to do more. Despite all of this though I am very glad that I retired because I know in myself there’s no way I could have carried on.
ider reducing your You may be able to cons ly, rather than giving hours or working flexib you’re disabled or up work completely. If n, your employer has to have a health conditio tments’ so you’re not make ‘reasonable adjus And if you request disadvantaged at work. your role, hours, or reasonable changes to nsider them. workplace, they must co
Billy McFarlane was diagnosed with PH in December 2016 and had to leave his job as an HGV driver. I drove every kind of wagon you could get; four wheels, six wheels with trailers on the back… all over Europe. I was a camper driver, which meant I slept in the cab and was often away for days at a time. I enjoyed it. When I got my PH diagnosis I asked my consultant if he could sign my medical form to allow me to drive buses and lorries but he wasn’t able to. So that was that. I resigned, as medical retirement wasn’t an option. I was 53 years old. I can still drive my car, but I can’t get a license for HGVs because of my condition. When I realised I couldn’t continue, I had help from the Citizen’s Advice Bureau and my sister around benefits. Four years ago, my partner decided to give up work and look after me, so we are both now on benefits. We get by. But my job was a big part of my life and I miss talking to the other drivers.
AUTUMN 2021 emphasis 24
Wendy Rowley went back to work part time in retail after her diagnosis. But after moving to a different part of the UK and struggling to find a role to suit her limitations, she has decided to stop working completely. When I was diagnosed with PAH in 2018 I lived in Wales and worked in a local home discounts store. I had felt poorly for some time and after getting my diagnosis I had six months off sick. My employers were very supportive, and I went through a phased return to 16 hours a week, with no requirements to do anything physical. During my time off sick, my partner and I had decided to move back to England, and I had planned to find a new little part-time job after we had settled. But each time I found a job I wanted to apply for, as I read through the description there was an increasing list of things I knew I wouldn't be able to do – such as heavy lifting, daily deliveries or long hours. I eventually found a nice job at a new cafe on a local caravan site, which had no stairs. I was honest with my employer, and she was very understanding, however it was obvious she didn’t realise how serious it was. On my first day I was asked to clip the wire on my Hickman line machine out of the way as it could be a hazard, and this resulted in a blockage causing the alarm to go off. By the end of the first week, I had to tell my boss I couldn't carry on with the role. I was so exhausted waiting on tables, walking backwards and forwards with heavy trays, and having to rush to keep up the pace. I later saw the job readvertised, and the first line read: 'Part time staff required, must be fit and well'. Having this job, even for a short time, made me realise that I just could not do the things I used to. I have been on the active transplant list for three months and I have now decided to stop looking for work until the operation has taken place and I am on the road to recovery.
to Where can I turn for help about making a decision?
are the best people Your specialist PH team t your ability to work. to consult initially abou at benefits or grants And you can find out wh by using our free you may be entitled to or at www.phauk.org search tool and calculat tions also offer free The following organisa help and advice: ent ser vice offering Pension Wise: A governm making sense of how impartial guidance on your pension pot. and when you can access it Call 0800 138 3944 or vis .uk www.moneyhelper.org An independent Citizens Advice Bureau: g in confidential organisation specialisin e. Call 0800 144 8848 information and advic ) or visit (0800 702 2020 in Wales k g.u www.citizensadvice.or yees and employers Acas : Acas gives emplo workplace rights, free, impartial advice on Call 0300 123 1100 rules and best practice. uk or visit www.acas.org. arity that helps people Turn2us : A national ch gain access to welfare in financial hardship to nts and support benefits, charitable gra 2000 or visit ser vices. Call 0808 802 www.turn2us.org.uk may also consider If you can afford it, you viser. You can find a consulting a private ad partial retirement list of regulated and im /3f18fJl advisers at https ://bit.ly
AUTUMN 2021 emphasis 25
In conversation...
n o e f i l My n o i t a c i d e m V | Making the decision to start IV medication is complex, and as a working mother-of-two, Rinku Puri knows this more than most. She spoke to PHA UK Chair Iain Armstrong about life on a line, and what she considered before making the move.
I R
At what point was IV medication mentioned to you? How did you reach that point with your condition? I was diagnosed with PH in 2011 and for years I was stable on bosentan and ambrisentan. When my liver started being affected, I moved onto the epoprostenol inhaler, but the pressures were still not coming down enough, and my consultant thought that my heart was struggling at that point.
I R
Did you feel that worsening too, or was it just the measurements showing the deterioration? It was more my measurements; I didn’t feel it myself. I didn’t feel unwell enough to be going onto IV and I was resistant to it at first. After a bike stress test, my husband and I were shown all the evidence of the stress my heart was under - every graph and chart - and that really informed our decision.
AUTUMN 2021 emphasis 26
I
I know from listening to lots of people over the years with PH, that because advanced treatments like IV are more demanding, some people need to feel more unwell to accept them. It’s interesting that you made a joint decision with your husband when you were working this through. Yes, we both asked questions and my husband read a lot around it. He helped me make an informed decision. He is very technical, so he was looking at the evidence base that was out there for this drug. He was looking at the analytical literature that I didn’t think about, as I’m more emotional and so looked at it at face value. He helped me work through the pros and cons, including the impact on life expectancy, so it felt like an informed decision that we made. He really helped me grasp that if I went onto this, it would be a
R
challenge - but that we could work through it together. I also spent time talking to people who were already on IV (who the hospital put me in touch with) and that really helped.
Rinku was diagnosed with pulmonary arterial hypertension ten years ago. She is married to husband Sunil and the couple have two adopted children. Rinku works as an Occupational Therapist at her local hospital in Coventry.
Rinku and her husband Sunil
I R
"...I can go anywhere now. I just look at the environment. Last year we went on holiday to Canada..."
What were the main worries or fears that were causing barriers? What did you need to understand more about? It was the basic things in life. How do you shower with this? How do you carry the pump around with you all day, every day? How do you sleep with it? How do you travel with it? It was those anxieties for me. I’m completely independent and I work full time on a busy hospital ward - how would it impact my life? It was scary but doing all the research and talking to people really helped with that. And now, after four years with it myself, I can tell others about it too.
R
I
R
It’s really important to hear other real experiences. As a nurse consultant, I can tell patients what it is like, but there is nothing quite like hearing from someone who has lived with it themselves. What were the main questions you asked your specialist team when coming to a decision about IV?
The main ones were: How is this going to change my pressures? How is this going to change my condition, and what impact will that have on my life expectancy? We needed to hear how the medication was going to prolong my life or give me energy. I also had questions about other options in the future (because of the research that’s always going on) and how the dosage might change.
I
And when you made the decision, and then the transition, what was it like going home after getting used to administering the drug in a hospital setting? I was allowed to come out for four days (on ‘weekend leave’) but I had the number for the nurses. Every night I had an issue with my pump so that was quite scary. There was a lot of problem-solving, but I was very organised and my husband had been trained up on it all too.
I R
What have been your main challenges with the pump? I had to work out how I was going to wear the pump and what would be comfortable. Some people like to have it over their shoulder. I like to wear mine in a pump bag, and I just have it around me so it’s tucked away, out of the way, and I can get on with things. When going out and about, I have an extra ‘emergency’ bag. I leave it in the car with everything set up, so I don’t have to worry about it each time. You also have to work out what’s best for you in terms of showering and sleeping. Some people put the pump in the bed with them, but I put it on the side table. When I’m showering, I put it on the hook and shower quickly. It’s just a case of working out those things. You need to have a look at your environment, how things are set up at home, and work out the best way for you.
AUTUMN 2021 emphasis 27
"Some people like to have the pump over their shoulder. I like to wear mine in a pump bag, and I just have it around me so it’s tucked away, out of the way, and I can get on with things."
The family can still enjoy seaside holidays
I
It sounds like planning has helped you, and I presume it then becomes much more of a reassurance and a routine? Yes, I can go anywhere now. I just look at the environment. Last year we went on holiday to Canada, and I thought about where I was going to make my medication (so it was a clean and sterile environment), where I was going to shower, and how I would make sure no one touches the pump or pulls the line.
that sometimes mummy needs extra time, or that she can’t run around and do things. I was naughty and gave him some syringes to play with, so he was familiar with all the technical bits. He never touches anything or does anything with the pump. He has tugged on my line by accident when I’ve been playing with him, but he knows that he can’t step on it or touch it. With both of my children, we’ve always been very open and encouraged them to have a feel and a play with the pump.
I R
I
R
What’s it like with the children? How did they get used to the pump and the line? My boy was very little when I went onto the pump, and he has been used to it from the start. He calls it Bubbles, and my nieces and nephews now do the same. He knows I’ve got this ‘poorly’ on me, and he’s not allowed to touch it. He’s also aware
AUTUMN 2021 emphasis 28
So, thinking about everything we have discussed, what have been the biggest benefits for you in terms of going onto IV therapy? The fact that I haven’t deteriorated, and I’ve got a lot of energy. I’ve got two kids, and I work full time, so that’s important. It’s given me the confidence to go out and do things more, and not worry
R
about being too breathless. Even though I probably don’t feel it, I know it’s helping my heart and lungs. All my walk tests have improved and I’m able to do a lot more. If I hadn’t gone onto the pump, I think I would have struggled. I’m here, four years down the line, and it could have been a very different story.
I
It is good to hear such a positive response to treatment. People have different responses – and not everyone can work full time with children. But it sounds like being on IV therapy is reassuring for you. What advice do you have for others in the process of making a decision? Speak to your PH centre. They are the experts - so ask any questions and mention any fears. Make an informed decision, but at the end of the day, you’ve got to remember you’ve only got one life. I’ve done everything I wanted to do and probably would have done even if I didn’t have the IV - but with it, I’ve been able to do more.
R
.
Award shortlisting
for emPHasis-10 PHA UK chair Iain Armstrong has been shortlisted for a major award for his development of the emPHasis-10 quality of life questionnaire.
Iain was named as a finalist in the ‘Innovations in your Specialty’ category of the Royal College of Nursing (RCN) Nursing Awards, after being nominated by a colleague for his work. EmPHasis-10 will be familiar to most of our readers as the questionnaire you’re asked to complete during routine appointments with your specialist team. Designed 11 years ago as a clinical tool to measure quality of life in PH, it is now used around the world to help doctors and nurses understand how patients are responding to treatment.
Dr Iain Armstrong
“It was a wonderful surprise to have been nominated for this award and to be named as a finalist is the icing on the cake. I am passionate about ensuring quality of life is prioritised for people with pulmonary hypertension – especially given the severity of symptoms that are experienced by those with this condition.”
emPHsis
The tool addresses healthcare in a more holistic way by asking questions about mental wellbeing and general health, as well as about specific symptoms of the disease. The ten questions produce a score, which helps patients and their families and clinical teams to have important conversations about quality of life. Iain, who also works as a Nurse Consultant at the Sheffield Pulmonary Vascular Disease Unit, invented emPHasis-10 after identifying the need for a measure that considered the dayto-day impact of PH. He worked with Professor Janelle York of the University of Manchester to develop the tool and bring the innovation to life. EmPHasis-10 has now been translated in 24 languages, with 35 more translations in progress – and it’s used throughout the globe in routine care and clinical trials. Iain was shortlisted for the RCN Nursing award after being nominated by a colleague in recognition of the impact of his work with emPHasis-10, and its benefit to people affected by PH. He delivered an online presentation to judges over the summer - raising awareness of PH amongst the wider nursing profession - and the outcome will be announced in October. We’ll keep you posted!
Your thoughts on emPHasis-10 “I keep a record of my score. I think it’s really helpful. I can look back and relate it to when I had a difficult time with PH or when I’ve been at my strongest.” Tess “I like to complete the form as it’s really been interesting seeing how I change over a period of time. A very interesting approach to patient care and quality of life.” Julie “As someone who finds PH emasculating and someone who finds it difficult to accept help, filling out the form allows me to address my condition honestly.” Stephen
10
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the English languag
e is Copyright
© PHA UK 2013.
AUTUMN 2021 emphasis 29 Black Pantone: Pantone: Black 2945 Pantone: Pantone: 2945 032 Pantone: Pantone: 032 368 Pantone: Pantone: 368
Do you need someone to PHA UK
talk to?
Listening
LINE
Our Listening Line support service gives you dedicated time with a PH professional to discuss your worries or concerns. • Available to all PHA UK members and those close to them • One-off or weekly telephone appointments available • An impartial listening ear
Find out more or request an appointment by emailing listeningline@phauk.org or calling 01709 761450 Appointments can also be booked via our website at www.phauk.org SUMMER 2021 emphasis 10
This is not a formal counselling service and it is not designed to replace clinical advice from your specialist centre team.
PULL -
OUT
4 PAGE
Y R E V A D E Y A L P S A “GOSH H IN MAKING ME BIG PART TODAY” WHO I AM ot spent t Kaylee Myn reet is n m lu co ew Green Leaf Cr eated by Great Ormond St of g tr in be has lots s ar ye 18 OSH) and she their care. (G al it p os H ’s me under Children ies from her ti happy memor
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AUTUMN 2021 emphasis 32
Back to
school nsted with Emily Grave
eaf Crew Green L y is 10 years ist Emil ived with co l u m n l s he h as . old, and e she was three c s n i o s r c s PAH be g i n a s h e s m r e t s how A s n ew e tells u ith her h s , K U the lw s s c h oo manage condition. he alth
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ical tests. appointments and med t ren ffe di anaged to join my class t having PH means On one trip to GOSH I m "School can be fun, bu th some children in tra things that on a Google hangout wi that there are a few ex e in the car! I go to school in d using my dad's phon t. lan ou ab Fin k in th to ed ne you myself e in Hampshire) and I I have to be careful about not pushing Burghclere (where I liv . For example, in too far, especially in PE is the oldest year). ch hi that (w six ar ye in am g one of the positions netball if I am playin g around, or marking includes a lot of runnin outrun hool... sc o is really fast, I can’t t wh u ne o eo b m a so e v lo Things I ely puffed out. myself, or I get extrem s d n ie fr y m • Seeing t though, and they er school ft netball coaches are grea a My ll a b et n g breaks when I • Doin out, so they let me take e s m lp ip he tr l o o h position for • Going on sc and b one of them will take my d l o an o to h ed ne sc s e ie th it school iv upmasctin dru g gro yin . The other children at my oin bit t Dla d or •P n sh a a b for l e o m o h ot e ssc thie ivit d they know that I cann upmasctin dru g gro yin oin Pla •D know me really well an as they can, and usually keep running as much eaks or fine about me taking br all e ar ey l th oo h sc my class does a daily How PH affects me at apting activities. When ad to but I either walk or do go to the school office le, everyone else runs, mi ink I have to remember to wn when I need to. I th nchtime at one o’clock. a light jog and slow do ." PH take my pills every lu l knows about my that everyone in schoo days at school because iss m to ve ha I es m eti Som I have at Basingstoke, of doctor appointments g SH. I don’t mind missin Southampton and at GO to y es, the day after I have odd days, but sometim ant Emil ? o w als I e. u for o be y y da e th c of e i do extra work becaus Got a top her next column spital if I think it ho to e m th wi rk wo take my over in @phauk.org c -between the o in t ng hi yt an do to ble will be possi media
GREEN LEAF CREW
Q&A
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years old and liv Hammadh is 10 and with his parents Gravesend, Kent a is mother Fathim H . 14 , aa an H er sist this with PH in March was diagnosed e of m madh shares so year. Here, Ham en gs with the Gre his favourite thin Leaf Crew.
t favourite subjec Q. What is your at school? A. I like maths u read? last book that yo Dog Q. What is the r ou -H n -Mile-A A. The Hundred ng by Jeremy Stro to play? favourite game ur yo is t ha W . Q basketball A. I like to play best friend? Q. Who is your d dad an A. My mum t best thing abou Q. What is the having a sister? toys h my A. We play wit favourite snack? Q. What is your grapes A. Crisps and out u love most ab Q. What do yo your mum? oks s funny and co . A She’s alway the best food favourite film? Q. What is your guise A. Spies In Dis
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AUTUMN 2021 emphasis 34
n i y s u b t e G ! n e h c t i k e th
e l p p A ' s t u n h g u 'do apple rings are super These doughnut-style thier than the deep-fried easy to make, far heal s no cooking required. e’ alternatives, and ther
Ingredients...
150g soft cheese 2tsp honey eating variety) 3 apples (use a crunchy anut butter (optional) 3-4 tbsp almond or pe kles, to decorate Lots of coloured sprin
Method...
STEP 1. Mix the soft cheese with the honey and set aside. Peel the apples, then slice each through the core into five or six rings, about 1cm thick. Use an apple corer or small round biscuit cutter to stamp out a circle from the middle of each slice, removing the core and creating ‘doughnut’ shapes. Pat the slices r dry using kitchen pape – they should be as dry as possible to help the toppings stick. STEP 2. Spread some nut butter over the slices, if using, then top with the sweetened soft cheese. Decorate with the sprinkles and serve.
age courtesy Recipe and top im ood.com of www.bbcgoodf
What I learned
from studying with PH Emma Ferguson has recently achieved a first-class honours degree in English Literature - and her time as a student taught her invaluable lessons about managing her PH too. Here, she reflects on the last three years as an undergraduate. >>>
AUTUMN 2021 emphasis 35
What I learned
from studying with PH
On
my sixteenth birthday I received a diagnosis of idiopathic pulmonary arterial hypertension from a team at Great Ormond Street Hospital. I was already being treated for a congenital heart condition discovered when I was ten, but the two conditions were not viewed as related. My PH has posed issues throughout my education due to symptoms like tiredness, my greater risk of infection and missed school for hospital appointments. When it came to applying to universities, I set criteria such as low air pollution levels and accommodation on campus to ensure I could manage my condition as best as possible. The University of Leeds came out on top and in October 2018 I began my studies there.
Adjusting to student life
The life of an English Literature undergraduate is a very unstructured thing. In my first year I had eight contact hours a week which was reduced to seven in my second year and became a whopping ten in my final year. This structure suited managing my condition perfectly, as the rest of my time (when I was supposed to be completing independent study) was very flexible and allowed me to take rest when I needed it. The necessity of eking out my student loan to cover my costs meant that I walked everywhere and by the end of my first year, I was probably the fittest I have ever been. The toughest weekly task for me was carrying my food shopping for the 25-minute walk back to my house, but this was still doable with rest breaks. If I had my time again though, I would order my food online and have it delivered, which is what I did this year while shielding. My first year enhanced a lot of skills for me such as good time management. I learnt very early on that the pulling all-nighters routine favoured by many students when writing essays wasn’t possible for me. My condition meant that good planning and daily work
AUTUMN 2021 emphasis 36
Just before starting my first year of uni was the best way to manage deadlines. Societies such as the student newspaper also allowed me to write about my health and hidden disability while also helping me build a portfolio for my future career.
Shouldering the costs
My first year also taught me a lot about the additional costs shouldered by disabled people. Throughout my degree I had out-patients’ appointments with my specialist and this sometimes fell in the holidays and sometimes during term time. This necessitated flying back home to Belfast and catching up on missed work upon my return. The other costs associated with my PH were paying for prescriptions (something which doesn’t exist in Northern Ireland) and paying for other things like taxis to my GP’s office, or food delivery when I was too unwell to get those things on foot. While services like Student Finance’s Disabled Students’ Allowance (DSA) do exist, in my experience, they funded study aids like laptops and printers rather than subsidising travel costs or other medical expenses. Other services such as the disability services team at my university were usually helpful in advocating for me and they produced a report on reasonable adjustments for me every semester - which included accommodations such as leniency if I had to miss seminars and lectures.
The challenges of my second year
My second year at university taught me a lot about how variable my PH can be. After a healthy first year, I didn’t sufficiently prepare for managing my condition in my second year. Most students move into cheaper, private accommodation in their second and third years and I wanted to do likewise. It’s important to note that many universities like the University of Leeds do allow disabled students to retain their first-year accommodation for the duration of their degree if they apply to do so, and this is an option that in hindsight I should have taken. Instead, I lived with friends in a flat a 25-minute walk away from campus. This walk, while not necessarily an issue on its own, when coupled with a series of unfortunate circumstances meant that I became quite ill. The period of 2019-2020 in Leeds was extremely wet and the constant rain,
With my boyfriend Hugo in our second year of uni
With friends before our First Year Ball coupled with the longer walk to campus, meant that I regularly had colds which stuck with me. In January 2020 I went under with a bad virus which stuck with me for five months. Three courses of antibiotics and a steroid nasal spray later, I did recover but it was a long slog. The personal responsibility of cooking, shopping and generally looking after myself - while still attending lectures and doing coursework - meant that I never had a proper opportunity to stop and focus on getting better, which probably prolonged my illness. The lockdown measures in March 2020 came into place two weeks after my mum had demanded that I come home due to her fears about the virus preventing me from travelling home. I was very fortunate that I was able to come home and be looked after while finishing my second year.
my final year before it was announced that teaching would take place online, but I mostly lived at home. It has been interesting to see how the university plans to retain measures such as online teaching in the future and I’m pleased that this means more options for disabled students going forward. As I’ve begun to apply for jobs, I have also seen more remote positions being offered, and flexible working options, which I find encouraging.
Looking ahead
In July, I graduated from the University of Leeds with a first class (hons) degree in English Literature. It has been a long process, made tougher to navigate at times due to my PH, but also something that I have found very rewarding. As I move onto the next step, I feel that navigating studying and getting through the pandemic have prepared me for the future and the issues that can and do arise from my condition. The biggest takeaway that I have is that preparation and mindfulness of your limits are the most useful things you can do to manage PH in a full-time study environment.
< Attending an art exhibition in my first year of uni
Understanding my limits
My health issues have created in me a drive to do everything when I am well. This drive, however, can also prolong illness and create over-tiredness. After my healthy first year, where I had held down a part-time job alongside my studies and completed a sponsored run (at a walking pace) I had become overconfident about how much I could do. For my second year I had signed up to do too much. These had been great opportunities and were doable when I was well but when I got sick, they became a burden that was very hard to shift. Heading into my third year, I shed a lot of responsibilities and limited the number of extracurricular activities I took on to prevent a repeat of my second year. My final year was entirely online due to COVID-19. This presented new challenges but from a PH perspective the online working conditions were helpful. I had unfortunately signed for a flat for
Celebrating the completion of my final year dissertation AUTUMN 2021 emphasis 37
Walking on At 82, Malcolm Fordyce from Derbyshire had a lot to consider when he was offered a pulmonary endarterectomy following a diagnosis of Chronic Thromboembolic Pulmonary Hypertension (CTEPH). Ten weeks after his surgery, he spoke to us about the journey.
I
Malcolm one month after his operation, May 2021
AUTUMN 2021 emphasis 38
t all started in December 2019, when I was leading a walk in the Peak District and found myself really breathless and quite unable to climb up a hill. We had always done a lot of walking, including walking holidays abroad, and so this was quite a shock. I saw a GP several times, but it wasn’t terribly conclusive - and in retrospect, I understand how difficult PH can be to identify. In March 2020, I had a violent reaction to some medication I’d been put on and ended up in the emergency department of my local hospital, where I was seen by cardiologists who prescribed a different medication. After several months and various tests, it was obvious that I was getting worse and I was referred to the specialist centre at the Royal Hallamshire in Sheffield. I went for what I thought would be a day visit, but after multiple tests I ended up staying there for nine days. I was given a diagnosis of CTEPH and told I might be a candidate for a pulmonary endarterectomy (PEA). I clearly remember the consultant making a sketch of the details of the operation - which I still have - and my initial reaction was ‘I don’t think I like the idea of that’. I was discharged to consider my options. Royal Papworth [the only hospital that performs the PEA operation]
rang me very quickly and an appointment was made to meet the surgeon, Mr Jenkins, on New Year’s Eve. I was told that I wouldn’t need to make a decision at this meeting, but that I could go home and discuss it with my family. I was sent lots of information about all aspects of the operation and had a long telephone call with one of the PEA nurses which was extremely helpful. I was told that I should phone them at any time if I had any questions. I was very much in two minds at first. I felt I would be going into a completely unknown situation and a big concern was how I might feel when I came through it. I had only been in hospital once in my life, in 1957, and I had never had a general anaesthetic.
Making a decision
I discussed it at length with my wife, Sue and our two daughters. They had concerns and lots of questions, but they could see that I was struggling more and more with my breathing and definitely getting worse. Eventually, we decided that if Mr Jenkins told me I was a candidate for surgery, I would say yes there and then as I didn’t want to waste any more time. There was a sense of relief that the decision had been made.
Malcolm on his 80th birthday in 2018
Malcolm & Sue on the summit of Canigou in the Pyrenees
Malcolm’s wife Sue has supported him through diagnosis, surgery, and his ongoing recovery. The couple have been married for 57 years and she helped him come to a decision about the procedure.
“...listen very carefully to everything you are told” We left at 5am on a frozen morning to get down to Cambridge. Before meeting Mr Jenkins, my wife and I had an hour’s session with another PEA nurse which was very useful and encouraging. Then we had a long chat with Mr Jenkins. The risks of the operation were made very clear. But he said that treatment with medication was not an option and without the operation my future would be a slow degeneration. At some point, it would culminate in heart failure. I said that I definitely wanted to go ahead with the operation, but because of the COVID-19 situation at the time it was not possible to schedule a date. It was a case of waiting. The waiting seemed long but, eventually, in mid-March, I had a call inviting me for surgery the following month. I was really pleased that things were moving ahead.
Looking to the future
The operation was a success and cleared the blood clots. I was sent a photograph of what was taken out and it looked very strange, a lot like scrambled egg. Nobody knows why I had the clots, but I feel very fortunate to have reached 82 without health problems and I also feel very fortunate that I am
able to recover from this. It will be six months before I am fully recovered, and my aim then is to get back to walking reasonable distances. My days of going up mountains are just memories now, as I certainly understand that one must be very careful about not pushing the body too much - but I would like to get back to walks of at least five miles. At the moment, I am feeling so much better and just to be able to get up and walk into the garden or do circuits around the village is a pleasure. My quality of life is considerably better now, even after only ten weeks. My advice to someone else facing the same decision about surgery is to listen very carefully to everything you are told and take your time to weigh it up. These last months have been an extraordinary journey and have given me a much greater appreciation of how fortunate we are to have the NHS. Amid the pressures and problems of COVID-19, the care that I was given by all the staff, in many different roles, was outstanding - and I am so grateful. I would especially wish to thank Mr David Jenkins and his team at the Royal Papworth and Dr Robin Condliffe at the Royal Hallamshire.
“Neither of us were sure about the operation at first. But we could see things were getting worse for Malcolm. He doesn’t like hospitals, even visiting others there, so the thought of having a major operation was quite daunting. But by the time we went to see Mr Jenkins, Malcolm had definitely made up his mind. After a year of not being able to do very much, and knowing he was getting worse, there was really no choice. I had watched Mr Jenkins perform a PEA on a television documentary [‘Surgeons: At the Edge of Life’ shown on the BBC last October]. It helped me hugely to see him in action on the programme and I remember being terribly impressed by his calmness. I just felt that he was somebody we could trust completely. I tried really hard not to think about the risks and to be positive on the day of his surgery, but it was a huge relief that evening to hear a nurse from Papworth telling me it had been successful and he was fine. Nine days later he came home. The operation was a huge blessing as I can see Malcolm getting better day by day, and as his carer, I’m not having to do so much for him. He was never a cook though, so I don’t expect that will change! We are very much looking forward to being able to do lots of walking again as it’s something we have always done together.”
AUTUMN 2021 emphasis 39
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Introducing
Eva & Joy Eva Moriarty and Joy Pinguel are the newest members of the PH team at the Royal Brompton Hospital.
Joy Pinguel, Pulmonary Hypertension Research Nurse
Eva Moriarty, Clinical Nurse Specialist for Pulmonary Hypertension
“I started at the Royal Brompton
back in 2015, as a charge nurse
on the PH and congenital heart
“After completing my nursing
disease ward. When the post for
degree at Southampton University,
I started as a newly qualified nurse on the PH and congenital heart disease ward here at the Royal Brompton. After a few years of gaining experience, I moved to the cardiothoracic
high dependency unit, to develop my knowledge and skills in
critical care nursing. Whilst there, the pandemic hit, resulting in quick upskilling to intensive care nursing. This combined experience, and an open vacancy, led me to seek a role with the pulmonary hypertension team as it was an area which
I have been very fond of - and I had always hoped to one day
research nurse specific to pulmonary
hypertension came up, it felt like the dream job! I started
reading about and studying PH and grew a special interest
in learning about this disease. There have been many recent
clinical trials to help manage the symptoms and delay disease
progression. This has inspired me to learn more about research nursing in the field of my special interest. I hope to become a
clinical nurse specialist in the future and include my research role in this.
“My patients are my inspiration.”
“This team is so passionate and knowledgeable”
I love the role. It is a big change from shift work and being
I am adjusting nicely to my role and the PH team, including the
It has taken a little while to adjust into the routine and adapt
all made me feel welcome. I must give a special mention to
patients about how they get on with their day-to-day lives.
passionate and knowledgeable and are always looking for
when they were at their most vulnerable. I am also very lucky
I also feel inspired when I learn about the new study drugs
so I do enjoy the office interaction and the teamwork involved.
to see patients in the clinic doing well, especially with newly
become a specialist nurse for this team.
on the wards during a pandemic, and I feel very lucky.
consultants, clinical nurses, specialists and secretaries, have
but I am thoroughly enjoying it. I really enjoy hearing from
PH lead nurse Carl Harries! This team inspires me. They are so
In my previous role on the wards, I would only see patients
ways to efficiently deliver and improve care for our patients.
to have a wonderful team who always enjoy a good laugh,
that can potentially improve quality of life. It’s amazing
My patients are my inspiration. They have an undeniable
introduced drug therapies.”
fight inside them to adapt to their condition and live their lives to the best of their ability.”
Away from work, Eva likes to run, read and catch up with
Joy likes to keep active on her days off. She has recently started climbing, and practices yoga for relaxation.
friends. Before the pandemic, she loved to travel.
AUTUMN 2021 emphasis 41
“ We knew everything about each other. Apart from this.” Let’s give the people we love, the certainty they need. Talk to your loved ones about organ donation.
Visit organdonation.nhs.uk
AUTUMN 2021 emphasis 42
Design with meaning When PHA UK member Kevin McAllister combined his talent for art with his desire for raising awareness of organ donation, the result was a unique sculpture designed to spark conversations that might save lives.
M
ade of multiple tealight candles and shaped as a heart and lungs, the creation has been a labour of love for Newcastle-based Kevin. Named ‘Phenomenal Continuation’, it is the result of a university project that saw the Fine Art student aim to get people talking about organ donation via an eye-catching visual to spark important conversations. Kevin has lived with heart disease and pulmonary hypertension for most of his life and although he is not yet on the transplant list, he has been told it is something he will need.
Even though organ donation laws have changed to a ‘deemed consent’ or ‘deemed authorisation’ system in England, Scotland and Wales, family members can still override a decision, which is why sharing our wishes is so important. And it was a ‘Leave Them Certain’ media campaign, run by NHS Blood and Transplant last year, that got Kevin thinking. The idea for the sculpture was sparked by his realisation that tealight candles burn for six hours – the same limited window of time for vital organs including the heart and lungs to be taken from one body and transplanted into another. This synergy spoke to Kevin, and he decided to base his design on the idea of hope and the gift of life. “Six hours is such an insignificant amount of time, that could be compared to a day out or a night’s sleep”, he said. “Yet for someone awaiting a transplant, it’s a matter of life or death. The candles can be refilled and go on to be lit again, representing new life and renewed hope. But I wanted them to be empty in my sculpture initially, to represent the lives that are lost to allow organs to be donated.” All the materials used, including the wire frame
and the candles themselves, have been recycled. And the base is made from repurposed wood boards, shaped to match part of the NHS Blood and Transplant logo. The sculpture stands around 50cm high and although it’s currently on display at Newcastle College of Art and Design, Kevin is hoping to find it a more meaningful home. “I would really like it to go to a hospital, where it can be used to spark conversations about organ donation”, he added. “It deserves to go somewhere it will be a focal point and bring real attention to the issue.”
“Artwork is where my voice lays”
Kevin has just entered his third year of a Fine Art degree, after rediscovering the power of expressing himself through artwork a few years ago. A lot of his work is based around disability and equality, and he is passionate about changing stereotypes. You can see more of Kevin’s work at www.wheesydesigns.com
We are sharing this news of Kevin’s sculpture to celebrate Organ Donation Week 2021, which takes place 20th – 26th September.
AUTUMN 2021 emphasis 43
mountai Moving
...one stone at a time
Whilst this magazine was at print, PHA UK member Cindy Regalado hiked 1001 metres up a peak in Snowdonia – 14 years after being told she only had months left to live. She spoke to us during training to share the experiences that led her to this challenge, and why the trek is a tribute to those who have supported her along the way.
I
n the summer of 2007, I was living in Ontario, Canada, when I suddenly started getting pangs in my chest while walking uphill to work. I also have systemic lupus erythematosus and at the time I had a kidney condition too, and it was my renal doctor I trusted the most – so I went to see him as soon as I could. Dr Somerville listened very carefully to what I was describing, and he consulted with his colleagues. Two days later, he asked me to come to the hospital so that a respiratory specialist could carry out some tests. They deliberated over the results for what felt like a very long time while my partner and I waited outside. With tears in his eyes, this doctor who was normally so stern and stoic, told me I had pulmonary arterial hypertension. He explained it was probably a lethal manifestation of my lupus, and my prognosis was just three to six months. I was 26 years old. It was difficult to get approved pulmonary hypertension drugs in Canada at the time, but Dr Somerville moved heaven and earth to help me. While he looked for ways of accessing
AUTUMN 2021 emphasis 44
treatment for my PH, I went through some painful and debilitating - but effective - treatment for my lupus. This proved the connection between the two conditions and showed that by treating the lupus, for the time being, my PH could be controlled too.
Learning my limits
Eventually, I was able to start medication for my PH too and I felt well enough to go to Mexico for three months to do some research for my Master’s degree. I moved to Sweden a year and a half later, where I was admitted to a pulmonary hypertension clinic who performed their own tests, and treatment there began quickly. It was while living in Sweden that I truly learned my limits, as I was no longer taking the lupus medication that was helping my PH, so it was now about treating the PH symptoms specifically. It took a few months to fully adjust, and I came to terms with the fact that I wouldn’t be able to run or do too much. I quickly learned to be on time for the bus! I lived in a third-floor apartment but even though there was an elevator, I was
defiant and would push myself to go upstairs very slowly.
A new (calm) life in London
I lived in Sweden until 2011 when I moved to London to pursue my research interests, and I have been here ever since. The process of transitioning to treatment here was very efficient, as my doctors in Sweden started conversations with the specialist centre at the Royal Free early. I felt in very good hands, and I’ve been stable on oral medication for many years now. I’ve learned that I must take care of the lupus first to take care of the PH, and for me, that means avoiding stress. Stress activates my immune system, which sends my lupus haywire and then makes my PH symptoms worse. Completing a PhD with these medical conditions was very challenging, but it taught me to change my mindset. Now, even with my own co-founded company, I prioritise my health and do my best to live a calm life. I break my working days up with yoga, I go for walks, and I immerse myself in novels to get my imagination going. This all gives my mind a break from the pressures that
ins
come with being an entrepreneur, which has really helped. Of course, you can’t always selectively tone down what you feel. Extreme stress and extreme joy are two sides of the same coin, so I’ve had to sacrifice one for the sake of the other. Therapy has helped in this regard.
Mountains on the mind
The idea for the challenge came from my six-minute walk tests. I became obsessed with going further every time, and I enjoyed having that goal – so I decided to see what else I could do. During the November lockdown, I started walking more around where I live, going a bit further and a bit steeper each time. I feel very lucky that I had such an extraordinarily fast PH diagnosis, and to have been stable for so long. For this reason, I decided to use my stable health and walking progress to work towards a challenge that would help raise awareness of the condition and the symptoms, as I
Cindy with friends training on Mam Tor know that not everyone is as fortunate as I have been. I chose Glyder Fawr because it is the smallest of the three peaks in Snowdonia. It is also the least frequented peak because it presents the most challenging inclines, such as those that life throws at you - but the rewards of reaching the top will be priceless. Plus, 1001 metres has a very nice ring to it! I didn’t know what to expect when I mentioned the challenge to my PH specialist, but he was very supportive, especially as he had seen the training I had already begun. He did, however, want to carry out an echocardiogram as a precaution, and suggested that I try a ‘halfway point’ challenge before tackling the real thing. And so, at the end of May, my partner, friends and I climbed Mam Tor (a 500-metre hill in Derbyshire), which all went fine. I will be accompanied by friends on Glyder Fawr and we will camp at the top, so
the trek will be split across two days. I was very nervous before the walk up Mam Tor, but completing it has made me more confident about September and I know that if I pace myself well, I can do it.
Dedicating the distance
This challenge will be a tribute to the wonderful doctors and nurses, medical researchers, and my friends and partner, who have supported me through this whole journey with my health. It will also be for other people with PH. I’ve been so inspired by some of the stories I’ve read in Emphasis; these people have helped me focus on being happy, and I’ll be thinking of them too when I’m going up the mountain. Ultimately, it’s about accepting what you can’t do and focusing instead on what you can - which is what this challenge is all about.
Cindy was due to complete her challenge over the first weekend in September, whilst this magazine was at print. Check out our Facebook page (@PULHAUK) for updates on how it went. AUTUMN 2021 emphasis 45
G N I S S E N R HA
R E W O P T E P
FOR PH r i e h t g n i t t u P
s w a p t s e b forward
Four-legged and two-legged friends rose to our ‘Paws for PH’ challenge and completed sponsored walks throughout July and August. Some discerning dogs chose to don our new bandanas for their fundraisers too, flying the flag for PH during their adventures.
Hero hounds included Archie and Sid, pictured with their human Sally, who covered 100 miles in a month to raise over £1200.
You can still purchase a PHA UK bandana and collar, kindly modelled here by Paws for PH participants Mash & Ivy,
for just £9.99
Visit www.phauk.org to order with free P&P. AUTUMN 2021 emphasis 46
enges ll a h c r e m m u Our super s r to raise e used pet pow as funds, and ll smiles as we see so many o it was great t lved. vo of you get in
Your Perfect Pets
It was a very tough job to choose shortlists from all the wonderful online pet show entries we received!
We asked for your favourite photo and a few words about what made your pet so special, along with a £5 donation, and it was heartwarming to read the wonderful ways your furry friends have made a difference to your lives. The photos were fantastic and it’s a shame we can’t share them all, but please feast your eyes on this beautiful bunch who made up the shortlists in each of our categories. Thank you to every supporter who put their pet forward for this special competition. They are all winners in our eyes!
S i d n ey ne r ! Win dogs ll S m a go r y t ca e
Nominated by To ni “He always com es to the side of the pond to gr eet us. It’s so relaxing watchin g him glide through the wat er.”
££
Ov e r 500 votes cast !
Iz z y
tta Nominated by Lorre en “This little dog has be d en fri l fu ith my most fa er, nc ca st ea through br and chemo, mastectomy But . sis no ag di then a PH s it’ rd ha w ho r no matte to le ab s ay alw been he is .” ile sm make me
C asper
£ Nominated by Tess life so much “Having Izzy makes ll her my better and easier. I ca g and do py era undercover th s born wa e Sh . she is my world e’s an sh w no t bu in Blackpool, Essex girl!”
A s py n n Nominate d by Jane “Ginny ha s b e en our lockdo wn shielding h / ero. She can ma ke you laugh and lift your spirits eve n at th most difficu e lt of times. We wouldn’t be without her.”
M a te o
er ! Winn of t ' Be s st' e the r r y o categ
Nominated by Kaylee “Aspynn is a special needs hamster that lives with a condition which restricts his breathing and ability to eat hard food. He gives the best cuddles !”
G i n ny
Nominate d by Lynn “My beauti ful boy was aband oned by his previou s owners and left on the streets. He gives me a purpose to get up every day. He’s my little star.”
Win L a rge n e r ! r categ dogs or y
Trouble
Winn er Cats ! categ or y
Chesterfield
Nominated by Suzy joy whilst I “Trouble has been my who sadly m was caring for my Mu May 2021. in passed away from PH next to a g tin The picture is him sit Mum on th wi wreath that travelled her last journey.”
Nominated by Alex “He makes me smile when I am down and made me ge t up and out the house when I wasn’t even sure I could - an d definitely didn’t want to. He is the best a cc e decision we ever made b y Reb d te a .” in m No has d n a f a e d “Ziggy is rmur and a a heart mu . I adore him cherry eye I dearly and lk ta always n to him eve e h though can’t hear. He’s my hero.”
Ko b a
£
y g g i Z
d by Kay Nominate fa, and s on the so le d d cu s e follows “He lov shadow, he s r’ te h g u a become is my d They have . re e h w ry ly to see her eve it’s so love d n a le b ra insepa teo !” around Ma her happy
Tomm
y
ne r ! Win en Kitt ry go cate
Nominated by Sarah spiration to “Otto has been an in s PH journey my son throughout hi him home and is here to welcome nsplant.” after a double lung tra
Floppy & Taliah
Nominated by Fatim a (6) “My pets are so speci al to me because they Nominate help me with my condition and an , y k e xie e ty, they are playful an ch is y m m o d they are T soooooooooo cute! An “ d help me relax when us and o v ie ch I’m is sad.” m e keeps me H l. fu y s la y p h da Nominated by Jo n my roug company o ch u m so w o n “I’m Button. and life is it.” Tommy in h it w I’m r e 4lb of pure tt e b ‘cattitude’ and my family wouldn’t have it any other way! They rescued me before the boys were born (they’re now 14 and 12) and we’ve always been friends.” d by Salina
Otto
B u t to n
AUTUMN 2021 emphasis 47
Family Matters
OUR DAUGHTER, OUR STRENGTH Rachel and Philip Anley have three children and the family’s world was turned upside down when the youngest, Beatrice, was diagnosed with PH earlier this year. The couple share their experiences of navigating a new journey with their daughter, and how they stay strong together.
I
t all started when Beatrice collapsed while out on a walk during a cold February. She fell over and went from being in a shocked silence to losing consciousness. We lifted her eyelids to find that her eyes were rolled back, and she was white and cold to touch. We thought it was hyperthermia. The ambulance arrived quickly and when they checked her vitals, they assumed that their O2 SATS machine was broken and called for a second ambulance. Beatrice regained consciousness but was not talking, just looking up at us in dazed confusion. When the second machine also gave unexpectedly low readings, they determined that she needed to get to the hospital as soon as possible. Here, several tests were conducted, and the following day she was transferred to The Bristol Royal Children’s Hospital - where she was sent straight to intensive care. At this point, she became a little more talkative, but her hands had needles in them, and she remained on pressurised oxygen. After one week Beatrice was transferred again, this time to Great Ormond Street, where more tests took place. When we finally sat down with the consultant, we were aware that they had found three holes in her heart, but not that there was a further, more serious diagnosis to come. He explained to us that, because she had the holes from birth and they went undiagnosed, her lung arteries had altered to accommodate the extra pressure that they were experiencing. That pressure came from the heart chamber leaking pressure in the wrong direction. The alteration in her lung arteries was now the main problem; holes in the heart can be fixed these days but at present, there is only medicine to ease the symptoms of
AUTUMN 2021 emphasis 48 WINTER AUTUMN2019 2021emphasis emphasis2234
what we came to know was PH. We felt shocked, and a range of other emotions - including deep frustration - that we didn’t know this had been going on inside her since birth. We knew that she had been quick to get out of breath, but we always took this to be a sign of being unfit or at the very worst, signs of early-onset asthma. We had not heard of PH, and it was not the diagnosis that we wanted or expected. In an age when everything seems possible through the power of science, we felt shocked that there could be an illness that seemed so thoroughly diagnosed and understood yet didn’t have a cure.
“
We have been shown huge kindness and support from our friends and family, and we have each other.
”
Beatrice takes Revatio (Sildenafil) three times a day. This is administered using a syringe into her mouth and although she does not like to be watched while she takes it, she is very good about it. She is coping remarkably well, considering. She is a naturally cheerful and happy child. She does not know or understand the potentially life-limiting implications of PH. She is used to being out of breath after a small amount of exercise and knows to make time to rest and recover.
Our advice for other families...
Rachel and Philip have learnt a lot since Beatrice’s diagnosis, and are keen to help other parents and guardians at the start of their journey with PH. Ronald McDonald accommodation is amazing and free, and a great provision when you are suddenly in need of somewhere to stay near a city centre hospital. It is well worth talking to the other parents there. We learnt from one Dad that his newborn child had been given an operation to create heart chambers that hadn’t formed in her heart. It gave us great hope that such a thing was possible. Use the power of the internet to keep in touch with your friends and family. At first, we were juggling WhatsApp and equivalent messages that kept pouring in. Setting up a blog enabled us to post daily updates so that everyone could see them in one place. Prepare for this illness to be less visible to others than many other illnesses. We have been given a blue badge to help with parking close to a destination. To look at Beatrice getting out of the car, it is not obvious why she has the right to this. Some parents might find it frustrating when they are asked quite regularly how their child is doing. The answer often tends to be ‘much the same’ or ‘not much change’. On one level it is of course a blessing that the symptoms are not worse at this stage, but there is a need to clarify that it is a long journey, and that each day is incremental to the one before.
Beatrice with mum, dad, Emily & Edmund Beatrice’s siblings, Emily (9) and Edmund (7), do not yet know about how serious PH is. As such, they get annoyed at the extra care that they perceive her to be on the receiving end of. They love her very much and are accepting of her as she is, but as her parents, we have the difficult task ahead of finding the right moment to explain to them that the PH diagnosis is serious and will have implications for her for the rest of her life. Our faith as Christians has helped us greatly. Our trust is in God, just as we are in his hands. We have been shown huge kindness and support from our friends and family, and we have each other. The NHS have also been incredible, and we cannot fault them at all. We know that being aged five is advantageous for Beatrice. Although she is so young, that very fact is what allows medical technology to develop in time to help her. We pray that this journey can bring about full healing for Beatrice. If in the process, we can help other families who have discovered that their child has a similar diagnosis, then that is a positive. A child who is unwell is the ultimate challenge for a parent, and there is strength in sharing that focus and determination together.
Beatrice with her mum
AUTUMN 2021 emphasis 49
Keeping up the
n o i t a s r e v n o c Over the last few issues of Emphasis, we’ve featured various articles around palliative care and how it can support people to live well with pulmonary hypertension. We believe it’s important to keep these conversations going, to break down barriers and help patients and their families benefit from the care available to them. Here, Sian Richardson, a PH specialist with a long career in palliative care behind her, shares her thoughts on this important subject.
I
believe palliative care is for the whole path someone is walking along with PH. As PH specialists we can help to introduce this and answer the questions that so many people - patients and their loved ones - are fearful of asking. They want these conversations about progression and prognosis, but they want their PH specialist to do it. As PH professionals, we understand the condition. So many of them have had such a battle to even get their diagnosis, so they trust us to help them.
AUTUMN 2021 emphasis 50 AUTUMN 2021 emphasis 52
One thing that is different in palliative care in PH, compared to previous roles I’ve had, is the longevity of relationships with our patients. I’m three-and-a-half years into my post and I still see people I met in my first week, and I love that. I get to know the patient, their families, and their journey with PH - and it’s really important to have that history when you are referring someone for palliative care. Historically, community palliative care would only take cancer patients, but access is so much better now that there is more understanding of other diseases.
And as PH specialists, we will liaise directly with the community palliative care team (for example Macmillan nurses, or a hospice) throughout that care. It really works. The difference that palliative care can make to patients and their families is massive. It’s about supportive care during their journey, and if they need it in the future, it can be part of their palliative care later on too. Palliative care is holistic, supportive care. When I worked in palliative care, we might see someone for symptom management, and then not see them again for a year. It’s for all stages of the journey. It could be for symptom management, like breathlessness and fatigue, or for psychological support – which is part of that holistic care. The bereavement support that can be offered is so important too, especially if there are children involved. It’s really important that if someone needs palliative care, they feel they are able to access it.
Patients and their families should feel they are able to bring up palliative care with their PH team; whoever they feel the most comfortable talking to. They don’t have to wait until a clinic appointment, they can call at any time – and some may find it easier to talk about it on the phone. As PH professionals we will always listen to them, and help, when the time is right for them. We know a lot of people go straight to Google when they get their PH diagnosis. They then get frightened and bury it all. But having those earlier conversations about supportive and palliative care can make such a difference. There are so many amazing things
that palliative care can do; it’s such an asset for the patient and those around them. We need to show people what is available without them being frightened. Sometimes the families are the biggest ‘fear barrier’. They think if palliative care is discussed with their loved one it means they will think they are dying, so they will lose their hope and stop living. But it’s the absolute opposite. Palliative care is about supporting someone right from diagnosis. It’s truly holistic care, ‘whole person’ care, and put simply, it’s about asking ‘how are you?’ It’s about supporting the journey, and it’s important to start at the beginning.
Sian Richardson is a Clinical Nurse Specialist (CNS) within the Sheffield Pulmonary Vascular Disease Unit. She has previously spent 14 years as a CNS in palliative care, working across hospitals in Sheffield, and ten years as a nurse within a hospice.
New PHA UK publication coming soon To enable more people to understand palliative care and how it can help them, we are working on a special publication dedicated to this subject. We expect it to be published before the end of the year. If you would like to pre-order this publication (completely free) please email office@phauk.org or call 01709 761450 and we will send you a copy as soon as it is printed.
AUTUMN 2021 emphasis 51
Delving into
diuretics In his regular column for Emphasis, Consultant Pharmacist Neil Hamilton explains the role of ‘water tablets’ in managing PH.
After what has been a difficult time for everyone, I hope that we are all able to look forward to the new world of ‘living with’, rather than in fear of, COVID-19. Most of the British public have now been vaccinated and optimistically, as I write, it seems as though case numbers are falling from the peak of the third wave. With schools and university students back, shops and restaurants bedding into the ‘new normal’ and crowd events such as football and music concerts restarting, life is steadily getting back to how it was before the pandemic. I hope that
AUTUMN 2021 emphasis 52
being fully vaccinated gives enough reassurance to the most clinically vulnerable, because time is precious, and we all need to get back to living life to the full. The PH centres have continued to see patients, albeit in very different ways to before, throughout the pandemic. We had to prioritise our face-to-face appointments to those most in need. This recognised the limitations we faced in terms of distancing, stretched staffing resources and securing our patients from transmission. However, the PHA UK’s
research also clearly described the huge anxiety amongst some of our patients about attending any appointments (or even leaving their homes for any reason) - however important they were. Telephone, and sometimes video, appointments were quickly brought in across all the PH centres for us to keep in touch with all our patients. This has undoubtedly been successful and will continue in the future to bridge the gap between less frequent clinic attendances.
Whilst the ‘non-face-to-face’ appointments have been a necessity, it is far more difficult to manage some of the consequences of PH such as fluid retention or heart failure this way. We have seen some very unfortunate cases where patients have been admitted to our unit in Sheffield with legs swollen up to (and even higher) than their thighs. Such patients have needed lengthy hospital stays for intravenous diuretics in order to offload the fluid. Whilst we can never say for certain, it is likely that if these patients had confidence to access their GPs, local services, or been able to come to a hospital appointment, these symptoms may have been dealt with far earlier. If you have PH, you are advised to keep a close eye on signs of fluid retention, as this can be an indication of heart failure and worsening PH. Fluid retention, also sometimes called oedema, may be widespread around the body (especially in younger patients) but is most commonly seen around the feet and ankles. Whilst invisible from the outside, heart failure can cause fluid
include furosemide and bumetanide (loop diuretics) bendroflumethaizide (a thiazide diuretic) and spironolactone, epleronone and amiloride (potassiumsparing diuretics). Different types of diuretic may be combined if oedema persists with only one. For example, loop diuretics such as furosemide are often combined with potassium-sparing diuretics such as spironolactone. This ensures that potassium levels are kept at safe levels in the blood. Potassium is very important, not least to maintain a normal heart rhythm. Anyone on diuretics will need regular blood tests to closely check kidney function and salt levels (including potassium). This is even more crucial if thiazide and loop diuretics are combined, or you are prescribed high doses of any of these medicines. This is because of the risk of putting strain on the kidneys in order to treat the heart failure. Doctors will prescribe the lowest effective dose that keeps the swelling down, in order to try and avoid these complications if possible.
“You should keep a close eye on your own fluid status at home” to build up around the lungs, causing shortness of breath. In order to keep their oedema to a minimum, many, but not all, people with PH are prescribed diuretics, or ‘water tablets’. Diuretics work by causing the kidneys to increase the amount of salt and sodium that is filtered out of the blood and into the urine. When these salts are filtered out of the blood by the kidneys, water is also drawn alongside (like a magnet). By removing the excess fluid, they make it easier for the heart to pump blood around the body. This is useful in heart failure where the pumping mechanism of the heart is less effective Diuretics commonly used in PAH
Whilst essential for many of you with PH, diuretics are not without side effects, usually as a result of the salt level disturbances. On starting someone on diuretics, we will discuss increased thirst, headache, low blood pressure, fatigue and gastrointestinal symptoms. Unfortunately, some diuretics can cause increased sensitivity to sunlight, so extra care is needed on sunny days. We will also make it clear that diuretics will make you go to the toilet more than normal (which is necessary to lose the excess fluid). In order not to ‘undo’ the effectiveness, we also discuss the need for drinking a sensible amount of fluid each day. It is also sensible to watch
for sudden changes in weight, as this might indicate worsening heart failure. As diuretics make you produce more urine, for very practical reasons it is recommended that these are taken in the morning (for once-daily dosing) with a second dose at lunchtime if prescribed. In exceptional circumstances, it is possible to make minor adjustments to the time at which you take your diuretics. They can be taken later in the day, to make it easier to deal with car journeys or important appointments. If you miss your dose prior to an appointment with a doctor or nurse, you must tell them of this change, or otherwise they may think that the diuretic is not working properly. In summary, diuretics are fairly commonly prescribed in PH, but doses are kept to a minimum in order to avoid side effects and putting strain on the kidneys. You should keep a close eye on your own fluid status at home, which can be done by periodically weighing yourself on bathroom scales. If lots of fluid is allowed to build up unchecked, it can result in the need for higher doses, frequent blood tests and even hospitalisation. As always, your local pharmacist or the team at the specialist centre will be happy to give advice regarding diuretics, dosing, blood tests and how side effects can be managed.
.
FACT: Fluid retention can also be referred to as oedema
AUTUMN 2021 emphasis 53
theinterview
“Every day this role gives me the opportunity to meet truly inspirational people all around the UK” CLINICAL NURSE SPECIALIST JAVIER JIMENEZ in conversation with
Mary Ferguson
AUTUMN 2021 emphasis 54
Javier Jimenez trained as a nurse in Spain and swapped sunshine for the city when he moved to join our NHS. Now a Clinical Nurse Specialist at the Royal Free Hospital in London, Javier reflects on his path to PH and the rewards and opportunities of his role.
Q. What initially attracted you to nursing?
A: What led me into nursing was my passion to do right by others and make sure I do whatever I can to help someone. It’s a rewarding feeling knowing you are able to make someone’s life better and a litter easier. Even when I was young I was fascinated by going to the doctor in my town. I would come home and play hospital and do my own clinical consultations with my family. I studied at the University of Girona and I had many roles before I came to the UK, especially in my training to become a nurse. I worked as a Nursing Assistant and as a nurse in a nursing home. I also worked in an emergency department and in the ambulance service in Girona.
Q. What made you decide to come to the UK?
A: I’m from a small town called Palafrugell, in the Costa Brava, but in my heart I have always been a city boy. I came to London many times before I made the move here and
fell quickly in love with its charm and its history. I had a good understanding of English but I wanted to improve my linguistic skills - and I knew there was such opportunity within the NHS for personal growth and development. These were the main factors that drew me to UK.
Q. And what led you to the field of PH?
A: When I finally made the move to the UK, I started to work in a stroke unit at Northwick Park Hospital as a nursing assistant - a short-term role while I waited to receive my Nursing and Midwifery Council pin number. Once I had settled, I worked as a full nurse in the same unit for a couple of years. During this time, I gained real understanding about nursing in the UK and I was able to build my confidence with my English and make new friends in the city. I finally applied for a job in the Royal Free Hospital, where I started to work in an interventional radiology and cardiology unit. Whilst here I started to hear...
AUTUMN 2021 emphasis 55
“I work with the best people; we all share the same goal and path” ...about pulmonary hypertension, and I was able to move o my current post. I always wanted to challenge myself, and I knew this would be a specialised role presenting a great opportunity to be able to learn, develop and grow. I’m someone who likes to continue learning, developing and progressing in my career.
Q. What are the rewards and challenges of your job? A: I think I enjoy the teaching side the most. I love to teach and train others - including patients, relatives and other healthcare workers. I also love to feel useful to the patients; to feel that I can help them with their therapy, symptoms and any other issues or queries that they might have. We go into the roles of caring for others because we want to make positive change to people’s lives, but it can always be challenging when at times we don’t always see the outcome we hope for. But every day this role gives me the opportunity to meet and interact with some truly inspirational and caring people all around the UK, and this is such a rewarding and humbling experience. Plus, I work with the best people; we all share the same goal and path.
Q. What has it been like working as a nurse through the COVID-19 pandemic?
A: COVID-19 has been a challenge which we all have shared within the NHS. It’s taken its toll on us as people and also on our patients. I was redeployed during the first wave to a COVID-19 ward. I was able to help the ward staff with the extra workload and help our patients get the care they needed. However, like a lot of services throughout the NHS, COVID-19 has had a knock-on effect and caused a patient waiting list to grow.
Q. How does PH care in the UK compare to PH care in Spain?
A: Spain doesn’t have Clinical Nurse Specialists as we know them here in the UK. That role is mainly carried out by doctors. The specialist nurses in Spain are more for big groups, like geriatric, pediatric, and midwifery, but not for specialties like PH. This is one of the things that attracted me to come to the UK and work for the NHS.
Q. What excites you most about the future of PH care?
A: The new ways used to manage and care for our patients. I think the pandemic has accelerated this. The nursing team has always done remote clinics by phone - especially with those starting new therapies, and particularly IV epoprostenol. But now we can do these clinics with video. This is a big improvement as we can see the patients, assess their skin tunneled line, and do part of the training too. I think this is a big step forward, as is easier to review the patients if you can see them.
Q. What do you enjoy about living in England?
A: I definitely don’t enjoy the weather! I love its history. Visiting historical places and learning UK history it’s something I enjoy a lot. I also love the multiculturalism in London and other big cities in the UK.
Q. And what do you miss about Spain?
A: I miss the weather, food, and of course my family and friends. I used to be able to visit Spain quite often [before the pandemic]. I also miss going to the Pyrenees to practice snowboarding. I haven’t been there for a very long time, but hopefully I can visit my family and friends soon.
Q. Finally, how do you relax away from work?
A: I love sports, travelling and cinema. I try to swim every day after work, and I love snowboarding during Spanish winters. My family lives an hour away from the Pyrenees, so it’s not difficult to get to a ski resort when I’m visiting them.
AUTUMN 2021 emphasis 56
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NEW AREAS !
Contraceptio n and PH Pregnancy an d PH Intimacy and PH
Just some of the wa you’ve beeys PHantast n over the l ic few montast hs
g n i s i a r d n Fu
S U C O F
Chairman’s
Supporters across the UK laced up their trainers to take on 10,000 metres on a route of their choice, and sponsorship came from far and wide. From young army recruit Jack Venables who carried a weighted backpack, to Hannah Royle who made it a family affair, participants put their own twist on the challenges - and we hope they had fun along the way. Check out these photos of some of our heroes in action. We are grateful to each and every one of them!
Gathering at the start
Phil during the challenge
Phil and colleagues celebrating the end of the cycle challenge
AUTUMN 2021 2019 emphasis 58 22
£ 35IS0ED3 RA
£12,4SE7D6 RAI
10k
YO UR
WAY
Jack Venables
Sandra Ballantyne
We’d like to say a huge thank to everyone who took part in our Chairman’s Challenge and 10k Your Way fundraisers over the summer. Together, you raised almost £12,500 - which is simply amazing!
Angela Lang
Hero pavement pounders
Stuart Craig
Challenge
Academy staff swap schooling for cycling A group of eight teachers from Lydiard Park Academy in Swindon took to the road for a sponsored bike ride from Devizes to Bristol. The team pedalled 39 miles in support of little phighter Beatrice Anley, whose father Philip – an IT teacher at the school – led the ride. The challenge has already raised over £3,500 and the JustGiving page will be left open for future fundraising activity. The team celebrated their cycling achievement with a well-deserved drink in the sunshine upon finishing. Cheers! You can find out how Phil and his family are coping with Beatrice’s diagnosis on page 48.
Motoring on
3-YEA
SUPP R PLEDORT GE
We are privileged that the Classic Marques Sports Car Club has chosen to support our charity throughout their next three championship seasons. The club will raise money for the PHA UK through 2022, 2023 and 2024, as well as featuring our logo on their cars. Our charity is close to home for the club, due to a competitor’s wife sadly losing her life to PH last year. A presentation about the condition and the PHA UK will be delivered at their annual awards dinner in November, aiming to raise awareness as well as money in her memory. Classic Marques Sports Car Club runs one of the UK's largest Speed Championships events, covering hillclimb and sprint disciplines.
Brave brothers make a leap for PH Brave brothers David Kennedy and Barry Lester jumped 15,000ft from a plane in a tandem skydive in July. The pair made the leap in support of Barry’s 20-year-old son Kieran, who has PH, and they enjoyed it so much they did it all again in August!
Tell the worl who you’re d phighting for
If you’re plannin g to take part in a sporting challenge for our charity, why not tell everyone who you’re phight ing for with our ne w dedication sheets ? Pin to your top an d keep the person you love cl ose to you as you run, walk, or cycle your way to the finish line. These special dedi cation sheets are included in our new fundrais ing packs. They ca n also be ordered separately , for free, by emai ling office@phauk.or g or calling 01709 761450.
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’re planning! u o y t a h w w o n k t us Don’t forget to le s on 01709 761450 u ll ca , rg .o k u a h Email office @p r Instagram cebook, Twitter o or tag us on Fa
AUTUMN 2021 emphasis 59
Wondering what financial support you might be entitled to?
r o t a l u c l a C s t fi e n Be ch and Grants Sear le b tools now availa rg o at www.phauk.
ould access c u o y if t u o d in F , charitable welfare benefits pport that u s r e th o d n a ts gran ing out on. s is m e b t h ig m you In association with Turn2Us rg.uk www.turn2us.o
And
finally...
We wanted to end this issue by sharing some prose that we came across online (author unknown). It really spoke to us, and we hope you appreciate it too.
Advice from a p atient... This may be a normal day B
ut it’s a big da a y in my life. t work for you The look on yo can change my ur face and the tone of yo u entire view of t he world. r voice Remember, I’m not usually this needy or scared I am here becau . se I trust you, h e lp m e I may look li stay confident. but I can heakre I’m out of it, your conversatio ns. I’m not used to b Keep that in m eing naked around stran ind. gers. I’m impatient b Nothing person ecause I want to get the heck al. out of here. I don’t speak yo You’re going to ur language well. do what to my what? I may only be h e but I’ll rememb re for four days, er you the test of my life. Your patients n eed your patien ce.
In your winter issue of Emphasis...
The next edition of Emphasis is due out in December and here’s what you can look forward to: PH and the pandemic:
Headline findings from our major survey
Looking back on PH Week: How we raised awareness together
Getting smart about exercise: How smart watches can help you keep active Plus, lots more articles, interviews and news…
You can get involved in Emphasis too: Emphasis Reviews - read a book, used an app or seen a film you think other readers may be interested in? Tell us about it! Family Matters - let us know if you’d like to tell us about your family’s PH experience in our regular feature.
Share your PH story - we'll send you some questions to help. Little phighters - do you know a child who would like to take on our Green Leaf Crew Q&A?
We always love to hear from you – contact media@phauk.org with any feedback or ideas.
AUTUMN 2021 emphasis 61
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 and resources
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.
• Emphasis magazine delivered to your door four times a year
Join FREE today at www.phauk.org Call us on 01709 761450 Email us at office@phauk.org Or simply fill in the form below and return to us.
• Fundraising ideas and guidance
• Free access to financial advice from qualified professionals via our partnership with Turn2Us
YES! I’d like to join the PHA UK for FREE Name: Address:
Postcode:
Email:
Telephone:
Are you a Patient n Carer n Parent n Medical professional n Other (please state)
Are you willing to take part in PHA UK surveys? Yes n No n Which specialist treatment centre do you attend? Pop your completed form into an envelope and return to us for free to FREEPOST, PHA UK (no stamp needed).
r u o t i s i V p o h s e n i l on
Free P& on all P ite m s !
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em s t i d e d n e time a r m b a s K e U th
A H P f ity at r o a e h c g r n ou wide ra upport
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9 9 . £4 Wristban ds ( pa ck of 2)
£4.99
Trolley coin g keyrin
Thermal insulated travel mug
Available in 3 colours!
£ 2.99
£4.99 re at o m h c u Plus m auk.org
www.ph
#HearOurVoices
I’m supporting PH Awareness Week 2021
