Emphasis Winter 2020

WINTER 2020

The magazine for supporters of the PHA UK www.phauk.org

PH WEEK

2020

How we put the spotlight on pulmonary hypertension

SHIELDED VOICES The impact of the early stages of the pandemic

Our transplant stories

Paula and Catherine share their experiences

PH & Pregnancy The facts to help you make choices

Plus...

Green Leaf Crew...Hospice care...Fundraising news Expert interviews…and much, much, more.

NG WISHIFAMILY H OUR P ERRY

A M MAS & T EW S I R H C YN P P A H YEAR

Welcome... …to the winter issue of Emphasis; the final edition of a challenging year. The PH community has always shown resilience and in 2020, this has been more evident than ever.

W

ith or without a pandemic, we’re on this journey together - and I feel very proud to be part of this unique group of patients, health professionals, carers and supporters.

The way everyone came together for our PH Awareness Week last month is an example of the strength of our community and it was amazing to see so many of you take on challenges, share stories, and put your weight behind our campaign. You can read our round-up of this very special week on p12.

We used PH Week to launch the findings of our research into the impact of the early stages of the pandemic. It’s clear that those who shut themselves away to protect themselves and the NHS made a huge sacrifice, and ‘Shielded Voices’ captures the experiences of people with PH during an unprecedented time. It was the biggest response we have ever had to a survey and an overview of the findings can be found on p15.

ck PS. The ba magazine page of this r as a door o doubles up ou ster, that y o p w o d in w y if you're can displa ou We hope y isolating. ful. find it use

At the PHA UK we are not afraid to tackle difficult topics that we know are important, and that’s why we have published an information booklet about pregnancy and PH - the first of its kind. We are hugely grateful to those who bravely shared their personal experiences for the book, and you can read extracts of these stories on p40.

I hope you enjoy this bumper issue of Emphasis and I wish you a peaceful festive season, however it may look this year.

See you in 2021, a year which I'm sure will be a better one for us all.

“With or without a pandemic, we’re on this journey together”

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

WINTER 2020 emphasis 3

12

PUTTING THE SPOTLIGHT ON PH A look back at PH Awareness Week 2020

15

SHIELDED VOICES

Our research into the impact of the early stages of the pandemic

CONTENTS WINTER 2020 Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, has helped us to produce this issue. Thanks to the Government for making this possible.

34

THE ROAD TO DIAGNOSIS Izzy Scott on her journey to a CTEPH diagnosis and what’s happened since

Living with PH...

33 Making the most of online appointments Our tips for getting the best from clinic calls and online consultations

37 Salina’s story

Salina Issory looks back on her PH journey, and looks ahead to the future too

46 Hospice care and PH

Tackling the myths and sharing the stories of those who have experienced it first-hand

50 Anxiety, worry and PH

Trainee psychologist Dr Gregg Rawlings challenges some common misconceptions about anxiety

55 My e-bike and me This magazine is printed on paper from sustainably managed sources

Tess Jewson on the joys of assisted cycling, and what to look for when shopping for an electric bike

29

GREEN LEAF CREW Our regular pull-out for children with PH

24

OUR TRANSPLANTS, OUR STORIES Paula and Catherine share their experiences

38

PH & PREGNANCY

The facts, the options, and real-life experiences

Latest News...

Regular Features...

14 New car stickers from the PHA UK

06 Emphasis Exchange

21 The power of poetry

20 Win big with the PHA UK lottery

22 Criteria widened for anxiety and PH study

42 Fundraising Focus

23 Skating for Sarah

44 All about our Facebook group

45 A year of supporting the PH community

52 The Interview

Order yours now and show people that not all disabilities are visible

How Margaret Porter’s poems have helped her through the pandemic

Your opportunity to help yourself and others – even if you’re already receiving support for anxiety How a roller derby team got creative to raise money in memory of someone special An overview of PHA UK activity between May 2019 and May 2020

News, updates and what you’ve been saying on social media A great way to contribute a little money on a regular basis to support our work The wonderful ways you’ve been raising money over the last few months How you can join our private online community and benefit from chatting to others affected by PH Meet Pulmonary Hypertension Children’s Research Nurses Lynsay MacDonald and Eleni Tamvaki

WINTER 2020 emphasis 5

Coming soon... e PH A UK A new podcast from th ings PH to will aim to bring all th the air waves. hosted EmPHAsis on air will be Clayton, n au by team members Sh uson rg John Smith and Mary Fe guests and will feature special tients, and interviews with pa e. or carers, experts and m cts We’re tack ling the subje th early that mat ter to you, wi ring episodes focusing on ca dy ing stu , PH th for someone wi and PH d with PH, children an volunteering with PH.

months, don’t worry, these will continue.

EmPH Asis on air will complement these audio recordings in a different style, so there will be something for ore ever yone - and even m . topics can be covered

u have We'd love to know if yo Email any ideas for episodes. give media @phauk.org or 50.

14 76 9 us a ring on 0170

Mary

Happy listening !

The first episodes will be available soon. al Keep an eye on our soci media channels and your email inboxes!

Shaun

g our If you’ve been enjoy in few t infocasts over the las

John

SEASONAL SU FOR O UR CHA PPORT R IT Y We’d lik

e to say a spec to two m embers w ial thank you ho have g great leng one ths to sup port the P to this Chris HA UK tmas.

Lea Acres has once again bee making a n nd selling beautiful ceramic tr ee decora tions, sha ped as

WINTER 2020 emphasis 6

robins in memory o f her son And Paula Will.

M 2021 calen assie has put togeth dars, featu er ring imag collected es from the PH with proc eeds help community, ing us con our work. tinue We are ve ry touche these effo d by rts, and w e apprecia the fundra te all isin received th g support we hav e roughout this diffic year. Than ult k you to e veryone w has playe ho d a part.

TURN TO P12 FOR A ROUND-UP OF THE WE E K !

Social Media Highlights

PH Week special

@RoyalPapworth

Not all disabilities are vis ible.

Our multidisciplinary tea m - comprising coordinator s, secretaries, specialist nu rses, consultants and many more - sharing this important message on #PHWeek20.

Sa

bbah Wasin This week is PH Awareness Week…These are the nu mber of tablets I have to take daily. Every day I look at this colourful mixture an d as annoying as they are, the y are the reason I am stil l able to function at a level tha t I haven't before.

phwarrior1 A day in the life of a PHer. I’m a specific kind of PH er, I have CTEPH (chron ic thromboembolic pulm onary hypertension) wh ich means my PH is caused by blood clots… these are the type that do no t like to go away! #RareButThere #PHW eek20 @Jane23122009 My darling girl, 1 year done

without her backpack and an intravenous drug to kee p her going. Thanks to her ope n-heart surgery, her oral drugs are enough to sustain her for now. Who knows wh at the future holds, but I guess that is true for anybody.

@jmathur_ Raising awareness

for #PulmonaryHypertensio n this week - a serious heart and lung disease which affects my family #RareButThere #Invisible Diseases

dipsydil So this is #PHWeek20 … each day has dif ferent struggles and challenges … when we say we are tired it’s not just your averag e tiredness, ex treme fatigue is horre ndous… I guess what I’m trying to say is #bekind

@sh

adowgeiko Celebrating my 30th birthday during #P HWeek20

Scottish Pulmon y Va scular Disease Unit Raisinar g awareness

in the Golden Jubilee

Kilmaine Primar Scho ol and Nursery Unity Th ank you

to everyone who joined us in raising awareness of Pulmonary Hypertension !

What a super week it ha s been ! We are so proud of our am azing family and community for coming together for a cause so close to our heart! We rocked Pu rple Day and will contin ue to sustain our dedication for this invisible diseas e.

@

maritess_mt I may not have followed my PH Week plan due to feeling really poorly, but I thoroughly enjoye d the awareness raising I could do. Forever raisin g awareness for those affected by #pulmonary hypertension.

Thank you @PHA _UK for another fab campaign! #RareButThere #NoCure AlwaysHope

jo.dunbar Archie doesn't like tha t PH interferes with my ability to bend over & pet him when he flo ps by my feet, & that sometimes I need to stand up & get a breath before I've filled his bowl ! #Pets4PH #PHWeek20 @be

eton_l Raising awareness to ena ble early diagnosis is key. Ou r son had a very late dia gnosis and was fortunate to rec eive a lung transplant a short time after. Thanks to @P HA _UK for their amazing work #PHWeek20 #organdon ation

Cas

Lawson I know I look well most of the time but I do n’t always feel it! You can’t tell tha t someone has #PulmonaryHyper tension just by looking at them - it’s an invisible disease. #PHWeek20 #R areButThere

FOLLOW US...

LHAUK Facebook @ PU uk Twitter @pha_ a_uk_insta h p @ Instagram A ORG UK YouTube @ PH WINTER 2020 emphasis 7

Emphasis exchange

hter’ ‘Phig a Beddow

by Laur

r this poem for he Laura has penned , ow, who has PH mother Julie Bedd strength. miration of her to express her ad

hter she loves My mum’s a phig extra hard eart is extra That’s why her h large. stacles she There are many ob ith ease. faces, it seems w ve her most are But those who lo the ones who see. breaking those Pushing herself, walls… for such a small A proud woman, tall. lady she stands so … Taking She carries us all breathing, shallow breaths, phighting.

Raisin awaregnetshsegame

A team of young footballers are ra ising awareness of PH on the pitch than ks to generous kit spon sorship.

The AFC Andrew s Under 10s Foss e team in Leicester wear ou r charity logo ev ery time they play, af ter suppor ter Nick Wilson sp onsored the shirts and kindly asked for our bran ding to be included. Nick’s wife Charlotte ha s PH and her brother Chris m anages the team .

What a wonderfu WINTER 2020 emphasis 8

l gesture !

Poetry CORNER love is Her support and iding… invaluable and gu ant, through no So many are ignor fault of their own on, so little is It’s a rare conditi known. u. Or someone Until it touches yo e. you love and ador you’ve never You see a phight seen before. r was already a Only my phighte jewel rarity, a precious y g to me mum, m You’re everythin love, your girl xx phighter. Lots of Got a poem you’d like to share? Email it to media@phauk.org or post it using the address on page 59, and you could see it online or in these pages !

In memoriam : Professor She il

a Glennis Ha

worth CBE We were extrem ely saddened to hear of the pass Professor Sheila ing of Glennis Haworth CBE in October.

Professor Hawor th set up the paed iatric PH service Ormond Street Ch at Great ildren’s Hospita l and was a driv the worldwide pu in g force in lmonary hypert ension commun As a result of he it y. r work to suppor t children with PH awarded a CBE in , she was 2007 for services to cardiology in She also co-found the NHS. ed the Pulmonar y Vascular Resear Institute (PVRI) ch and was widely recognised for he impact in improv r gl obal ing the diagnosi s and treatment of PH. Photo courtes

CTEPH IN THE SPOTLIGHT

y Rouney had PHA UK member Shell oadcast to the her CTEPH surgery br ared in a BBC world when she appe October. documentary series in darterectomy Shelly’s pulmonary en ns : At the was shown on ‘Surgeo era crews Edge of life’, with cam . The operation following her journey pworth was filmed at Royal Pa de provided Hospital and the episo Chronic a valuable insight into onary Thromboembolic Pulm ) and the Hypertension (CTEPH treatment available. e lead Dr David Jenkins is th nal pulmonary surgeon for the natio ramme and endarterectomy prog eration. performed Shelly’s op about this “The remarkable thing drain all the surgery is the need to to allow the blood out of the body to clear the surgeon to see enough n only be clots,” he said. “This ca e patient’s achieved by cooling th us – almost body to 20 degrees Celsi perature – half of normal body tem vital organs, to prevent damage to including the brain.”

y of PV RI

watch all of this Viewers were able to itnessing the taking place, before w m Shelly’s clots being removed fro pulmonary arteries. rdest bit of the David added: “The ha g the correct operation is developin thin pulmonary dissection layer in the ep and they artery branches ; too de allow and not could perforate, too sh be cleared to enough material will ccessful.” make the operation su T SHELLY’S FIND OUT MORE ABOU THE NEXT CTEPH EXPERIENCES IN ISSUE OF EMPHASIS

t Shelly awith e hom sband her huog and d

WINTER 2020 emphasis 9

A crafty christmas The sun was still shining when we launched our Christmas card design competition back in the summer, and we were delighted to receive 26 submissions from across our talented PH community.

WI

IzzyNNER P age latt 5

ER NN ke I o W ro son B mp o 6 Th age 1

W

Ale INNE xR R age udge 36

With entries crafted in paint and pencil, with digital design and photography - and even 3D modelling - it was a tough job to whittle them down to a shortlist of 11. You chose the winners from three categories via a closely contested Facebook vote and the cards have been sold over the last couple of months to raise funds and Christmas cheer. Here, we bring you all of the shortlisted entries to enjoy.

WINTER 2020 emphasis 10

A BIG th you to ev ank e who ent ryone ered competi our tion!

Oll Milnie age 1 e, 2

Daniel Martinez, age 33

Lorraine Wilkerson, age 71

I so Mc C b e l as age 5 kil

Matt Calv hew e age 4rt,

Cha r Keithlie age 1 , 0

sin Tam ings, h c t Hu e 29 ag

Oliver MartinezRoyle, age 6

WINTER 2020 emphasis 11

e r e h T t u #RareB The week we put the spotlight on PH

Thank you to everyone who got involved with PH Awareness Week 2020. Despite everything else going on in the world, the PH community pulled together to help people understand more about this rare disease - and it really made a difference. Here are just some of the highlights from this special week in November.

PH in the news

PH on film

Our ‘Hidden impa ct of PH’ animatio n was viewed by alm ost 6,000 people on Facebook alone , helping thousand s understand that not all the challen ge s of PH can be seen on the surface.

And

lots of you shared your photos for our ‘One Wor d’ video, showing the reality of life with PH.

shared their We are grateful to ever yone who ng PH Week. personal stories with the media duri

t page Izzy Scott (pictured) made the fron e erag of her local paper and other cov ror, Mir ly for members included The Dai dshire Yorkshire Post, Daily Star, Hertfor rn the Mercury, Portsmouth News, Nor e wer ws Echo and more. Radio intervie . too conducted across the country

PH in the classroom

Support from schools this year has been fantastic, with aw areness days held at Kilmaine Prima ry School in Northern Ireland and Ha wkesbury Preschool in Essex amon gst others.

WINTER 2020 emphasis 12

PH online

ies, photos and Social media was awash with stor ing content to raise shar ple peo facts, with hundreds of many photo card so ng seei d love awareness of PH. We posts on p7. al soci r you of e selfies! Check out som

Rising to the

20

PHighter challenge

Jo Dunbar sent 20 ki ndness packages to family and friends.

Containing homemade cookies decorated with a special word, an encouraging note , chai spice and tea bags for a war ming drink and a home-made bird feeder to watch the birds, Jo calle d them ‘time to breathe’ packages :-)

the PHighter20 PH Week 2020 saw the launch of special challenges Challenge and lots of you took on based around the to raise awareness and funds - all number 20. These are just a few... all, we’d like to Although we can’t include them e who took part say a huge thank you to everyon money for our and especially to those who raised charity. You’re amazing!

Matthew Calvert

Abbie Hampshire sang 20 songs and nursery rhymes and her mum shared each of them on Facebook

s read 20 story book k ee across the w

Archie Creech

walked, cycled and scooted 20 miles

Specialist PH nurse Karly Ward took on a

double challenge, running 20km and cycling 20km too

Specialist PHy nurse Wend Gin-Sing cycled 20km on a stationary bike, raising over £1,000 and inspiring many people along the way

Folakemi Ariwayo ,

6, drew 20 pictur es for her family

Patients and families from

Let’s keep the conversations going!

Great Ormond Street Children’s Hospital

created this beautiful collage to

gether

WINTER 2020 emphasis 13

CAR

WINDOW STICKERS Our new self-clinging stickers are designed to raise awareness of PH as an invisible illness and help make things a bit easier when parking in disabled bays.

Order yours now for just ÂŁ5 (P&P included) and support our charity at the same time.

car? a e v a h t ’ Don atching c These eye- ill look stickers w d in a just as goo dow! house win

NEW! ORDEROM NOW FR k.org www.phauLL OR CA 0 01709 76145

Shielded voices Lived experiences during the early stages of the COVID-19 pandemic Earlier this year we asked for your experiences of the first three months of the COVID-19 pandemic and a staggering 824 of you responded - by far the biggest response to a survey that we’ve ever had.

824

Over the page, we bring you the key findings of our research and extracts from some of the interviews we conducted with PHA UK members about their experiences.

You can view the full report, and read the complete personal accounts, at www.phauk.org Our survey aimed to give a voice to those who made a huge sacrifice during the early stages of the COVID-19 story.

Those shielding because of pulmonary hypertension locked themselves away to protect not only themselves, but the NHS too. And for some, as the results of our survey show, it came at the expense of both their mental and physical health. Others had different journeys.

We conducted this survey in the summer of 2020 and asked for people to tell us their experiences of the first three months of the pandemic, from April to June.

It is clear that COVID-19 will not disappear overnight and as time goes on, the experiences of those classified as ‘extremely clinically vulnerable’ will change. Therefore, we plan to conduct another study next year that covers a different timescale.

This is an important survey that captures the experiences of people with PH during an unprecedented time.

restpootal nses

Thank you to everyone who took part.

74%

of respondents were female

PHA UK RESEARCH

35%

have Idiopathic Pulmonary Arterial Hypertension (IPAH)

21%

have Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

18%

have Pulmonary Hypertension in association with Congenital Heart Disease

11%

have Pulmonary Hypertension in association with Systemic Sclerosis

15% ‘other’ WINTER 2020 emphasis 15

The psychological impact

The first 3 months of the pandemic had a significant impact on people’s psychological wellbeing.

90%

of people with PH said their emotional or mental wellbeing had been affected by the pandemic. 31% said it had been affected ‘severely’ or ‘a lot’.

85%

said they felt anxious.

A third said they felt ‘extremely’ or ‘very’ anxious.

58%

said they felt lonely.

A fifth said they felt 'extremely’ or ‘very’ lonely.

I feel my emotional and mental health suffered a lot more than my physical health. I am very close to all of my family, so not being able to see them was really hard.

Alex Charlesworth

57%

said they felt panicked.

A quarter said they felt ‘extremely’ or very’ panicked.

66%

said they felt depressed.

A fifth said they felt ‘extremely’ or ‘very’ depressed.

89%

felt distressed about the fear of contracting COVID-19. 16% felt ‘extreme’ distress.

93%

felt distressed about the fear of a loved one contracting COVID-19. 25% felt ‘extreme’ distress.

During shielding I actually felt more in control of my life.

I kept going physically and we did a lot in the house.

I didn’t feel frightened. Paula Hartley WINTER 2020 emphasis 16

The physical impact

I am proud of how I have handled myself through this

Physically, I was very much affected. Because I couldn’t go out it got to the point where I could hardly walk to the bathroom without getting totally out of breath. I felt vulnerable, which I have never felt before. Judy Bugg

47%

Almost half (47%) of people with PH said their physical health worsened during the first 3 months of the pandemic.

36% 27% 20%

said they lost fitness

said they gained weight said they felt the effects of sleep deprivation

PH symptoms also worsened for many.

29% 30% 11% 7% 11%

reported increased breathlessness reported increased fatigue

reported increased dizziness or fainting

reported increased chest pain reported increased swelling

It has been a lonely time but better to be safe in isolation

I was worried because my 6-year-old daughter couldn’t have her normal heart scans.

She also has severe digestive challenges and getting hold of the right food for her was hard.

Rebecca (not her real name)

My mental and emotional state changes daily, like the tide coming into shore

WINTER 2020 emphasis 17

My specialist centre team were fabulous. I feel that we are in this for the long haul, but I’ve learned that stressing about things out of my control is useless.

Jayne Venables

Support during the pandemic

64%

51%

65%

80%

of people with PH rated the support from their specialist centre as ‘good’ or ‘excellent’ during the first 3 months of the pandemic.

of people with PH rated the support from the PHA UK as ‘good’ or ‘excellent’ during the first 3 months of the pandemic.

of respondents rated the support from their GP as ‘good’ or ‘excellent’.

rated the support from their medication delivery service as ‘good’ or ‘excellent’.

Those shielding feel like the forgotten people

I felt there was very strong leadership from the government at the beginning and I really respected their decisions, but now the trust has gone. Paul Harris

I’m a single mum with PH and an autistic child and I felt no-one was helping me. I feel like I’ve been let down in every single way. Harika (not her real name) WINTER 2020 emphasis 18

PHA UK RESEARCH Thank you

A final word

Dr John Wort, Chair, UK Pulmonary Hypertension Physicians Group "It is clear that the physical and mental impact of the coronavirus pandemic has been enormous for people with PH.

It makes their sacrifice in shielding even more incredible, and as healthcare professionals we are truly grateful for the protection it afforded the NHS. We must learn from all of the experiences shared in this report. COVID-19 won’t disappear quickly and perhaps we will all end up working in a mix of differing ways from now on. It was encouraging to see that most people had good experiences with virtual clinics run by their specialist centres, but we need to ensure that we still provide the exceptional care that people with PH deserve. And we need to focus even more on mental health and exercise.

to everyone who took part in this important piece of research

Being labelled ‘vulnerable’ is strange At one point I was happy to go without some medications because I didn’t want to ask, again, for someone to go and pick them up for me

Despite the tremendously difficult time most people have experienced, there are learnings we can take from this very important piece of research.

Together, we can ensure that those with PH have the best quality of life possible – no matter what the circumstances may be."

All of the findings, plus more personal stories, can be found in the full report online.

Visit www.phauk.org or email office@phauk.org for a link. Free printed copies may be requested by calling 01709 761450.

WINTER 2020 emphasis 19

Support people living with PH from just

£1 a week!

We rely on regular donations to help us continue our work to support people affected by PH. By playing the PHA UK Lottery, you can contribute a little money on a regular basis – and you might even win!

• Choose to play as many times you like.

• Cancel when you want.

• No need to claim – if you win you’ll automatically be sent a cheque.

TO P U N WI

0 0 0 , 5 £2ERY SATURDAY EV

E ELP TH E H D N H A K AT T U A H P TIME SA ME

SIGN UP TODAY! Visit www.phauk.org and search ‘Lottery’ or call 01709 761450 The PHA UK Lottery is operated by Unity Lottery. 50p of every £1 goes directly to the PHA UK with the rest covering prize winnings and administration costs. To contact Unity Lottery call 0870 050 9240. Unity is operated by Sterling Management Centre Ltd, registered as an External Lottery Manager by the Gambling Commission under the Gambling Act 2005 - www.gamblingcommission.gov.uk PHA UK Registered Charity No. 1120756

“Poe try helps to rele as e my te nsion s an d fr us tration s" Living alone during lockdown, Margaret Porter found that writing poetry helped her manage her thoughts and feelings whilst shielding.

The 69-year-old, who lives in Lancashire, has Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and takes daily oxygen. A widow, she works part-time at the Haworth Art Gallery in Accrington as a Wedding, Events and Gallery Assistant – and it is this job which inspired her to put pen to paper.

Margaret said: “When the pandemic arrived the gallery had to close so I began shielding and working from home doing research into our oil painting collection. We began to meet on Zoom every week and it was decided to have a weekly challenge. Some of my colleagues are artists but not all, so it was interesting to see everyone’s interpretations.

This is how I began to write the poetry. The challenge for one I call ‘Warts and All’ was to produce something relating to how the lockdown was affecting us all during the lockdown. I wrote it when I was feeling at a very low ebb and reading it can sometimes still bring me to tears.”

Putting pen to paper, Margaret said, has helped her to manage her emotions during these difficult times.

She added: “I did enjoy the process of writing poetry overall and I think that it helped to release my tensions and frustrations of not being able to see anyone face to face. It came as quite a surprise to find that I could put my thoughts and feelings into verse as I had never done this before.

My advice to anyone wishing to write their own poetry is to think of how the subject makes you feel. Write down all the things that you think of and then arrange them to make sense. Don’t be afraid to give it a go as you could be surprised.”

You can read one of Margaret’s poems, inspired by the pandemic, below.

'H ope'

Hope is the sunrise at the start of the day Hope is the butterfly heading my way.

Hope is the birdsong so happy and strong Hope is the feeling you get from their song.

Hope is the rainbow its bright colours shine We all need to hope, soon things will be fine.

WINTER 2020 emphasis 21

Research

opportunity In collaboration with psychology researchers at the University of Sheffield, you have the opportunity to engage in an exciting research study using the world’s first self-help programme aimed at people with pulmonary hypertension.

The programme gives you the skills and insight to manage your anxiety - which we know is common in people with pulmonary hypertension. Previous research shows that 50% experience clinical levels of anxiety, and at times, panic too.

We’re encouraging you to take part in an important research study to test the programme’s value and effectiveness, with the aim of making it available to all. It is your opportunity to help yourself, and also others in the future.

We are now able to open up the study to people who have taken / are taking medication for anxiety, or who have received / are receiving therapy.

If you have any questions about the study, please contact lead researcher Gregg Rawlings at g.rawlings@sheffield.ac.uk

You are not alone

If you are struggling with anxiety, panic or worry but do not fit the criteria for this study please email us at office@phauk.org or call 01709 761450 and we will talk you through the support that’s available.

WINTER 2020 emphasis 22

Turn to p50 for more on

anxiety and PH

Your chance to help yourself and others Find out more and apply to take part at www.phauk.org (search ‘emotional support’) “I’m really excited to hear just how beneficial it has been for those who have taken part so far. Because it’s already been so positive, we are now able to widen the scope of people who can take part in this research. I would encourage you to consider taking part in this research study, it’s important for now and the future, and your involvement will make a difference."

Dr Iain Armstrong, Chair, PHA UK

Sara h a n husban d d Jason at a Roller We n c h e s ga m e

Skating for Sarah

With fixtures cancelled due to coronavirus, a south coast roller derby team turned their disappointment into a fundraising opportunity instead.

A

t the start of 2020, the Portsmouth Roller Wenches were looking forward to celebrating their tenth anniversary and travelling to Germany for a match against the Munich Rolling Rebels.

But when the world imploded due to the pandemic, lockdown meant training sessions - and spending time together - was no longer allowed.

Determined to stay positive, the girls decided to take on a ‘virtual’ fundraising challenge instead, collectively travelling the equivalent distance (1,127 km) from Portsmouth to Munich in the month leading up to their anniversary.

The rules were simple - to cover the km individually in any way they could, including skating, running, walking, rowing and cycling. Within ten days the distance had been met and determined to (literally) go the extra mile, the girls continued their virtual travels.

g (right) Katie Beerlin rah a with sister S

The skaters covered the equivalent distance to Amsterdam, where they played in 2015, and then completed a ‘virtual tour’ of the UK, logging distances between the locations of other teams who shared the same anniversary.

Over £1400 was raised by covering a total of 3207km, and the money was split between the PHA UK, Southsea Skate Park and PAPYRUS (Prevention of Young Suicide).

Team member Katie Beerling (known as ‘Buns of Anarchy’), lost her sister Sarah Cains to PH in January 2019.

She said: “Sarah was diagnosed in 2005 and was able to have many more years of enjoying her life with her family thanks to her treatment.

PHA UK support and advances in medication meant that she was able to do more and enjoy the time she had, including seeing her son grow up.

It was hard for me knowing that I

“

The Wenche s took a hard situa tion and turned it int o a positive outcome, ve ry much like Sarah d id.

”

could skate and be active, but that Sarah couldn't. She did enjoy coming to our bouts and hearing about games though.

And she adapted to what she could do rather than think too often about what she couldn't.

This fundraiser was a great event, bringing us together as a team (even when we had to be apart) and achieving a common goal and motivation for exercise.

The Wenches took a hard situation and turned it into a positive outcome, very much like Sarah did.”

.

WINTER 2020 emphasis 23

Our transplants,

Our stories Back in September, a national initiative by NHS Blood and Transplant aimed to get more people talking about organ donation and the importance of sharing your wishes. Organ Donation Week focused on the changes in the law around organ donation in England - which has seen the country move to an opt-out system in a bid to save more lives. PHA UK members Catherine and Paula shared their stories to highlight the importance of organ donation and raise awareness of PH, and we bring them to you here.

Catherine Makin from Lancashire had a double lung transplant in January 2020, five years after being diagnosed with pulmonary hypertension at the age of 32.

She shared her story eight months on from her operation.

The words ‘thank you’ don’t feel enough for giving me my life back

I

was assessed for transplant in June 2015, a year after I was diagnosed. It was first mentioned six months earlier, and up until that point I didn’t have a clue that it could be an option, or something that might happen. It was very scary having that conversation. I wondered whether, if I had the operation, I would come out the other side.

I was listed for transplant in late summer 2015 and I had the operation in January 2020, so I waited a long time - but part of that was due to my decision not to accept the lungs of someone who had smoked.

WINTER 2018 emphasis 24

e Catherinr with hedays niece 3 er before h nt transpla

In the months leading up to the transplant I was deteriorating rapidly. The decline began in June 2019, after years of being stable, and by December I was feeling pretty grim. I was breathless, tired, and started throwing up food every time I ate.

It’s hard to describe what Christmas last year was like.

I knew I was getting more ill, but there was nothing I could do about it. It was upsetting. I knew then that a transplant would be my last chance.

By January, I was feeling so ill that I was on the verge of changing my mind about smoker’s lungs. But then the call came.

Unbelievably, my phone rang just as I walked through the doors of my specialist centre in Sheffield for a clinic appointment. Straight away, I was taken by ambulance to Wythenshawe Hospital in Manchester. I was panicking and very scared and anxious during the journey, but I knew I had to do it.

There was a nine-hour wait before I went down to theatre.

I tried to stay calm, but even though my mum and dad were with me I couldn’t talk to them, or anybody, because I was so upset. I kept thinking that someone had to die for me to have their organs, so that I could live my life.

From what I’ve been told, everything went ok with the operation and it was successful. I was in hospital for five weeks and was discharged straight back home – I think it helped that I lived with my parents so they would be there to help me.

I was given a few things by the occupational therapy team, including a stool for the shower as the muscle wastage from being laid down for so long meant I wasn’t very good on my feet. I couldn’t lift my hands or arms above my head at that point, because of where the incision was on my chest.

I was given exercises to build my strength up and a community physio came out to see me too, but I was only able to have two sessions before lockdown.

That was a rough time and it did scare me. I was two

Cath with her erine niec 6 month e s post- tra nsplant

months post-transplant and had only been home for three weeks before lockdown and shielding began.

Now, nine months post-transplant, I’m doing well. I’ve had a few hoops to jump through; my bloods have been a bit wonky, and I started showing signs of rejection at the beginning, but that was brought under control via steroids.

There have been a few medication tweaks, which I expected, but I’ve managed to avoid infections and my incision wound has healed beautifully.

Walking is the biggest change. I can walk for miles now.

I’ve always liked walking, but my PH hindered it and that made me angry. Now I can walk in new places, and in July - six months after my transplant - I completed a 100km walking challenge. I ended up doing over 130km in one month and it’s something I am really proud of.

I feel like I can breathe better, and one of the biggest changes is that I can now walk and talk at the same time.

I have a two-year-old niece and I can run round after her and pick her up and give her a cuddle. Before my transplant that wasn’t possible.

I’m looking forward to returning to ballet fitness classes and to starting swimming too. I worked as a nursery nurse until just days before my transplant and I’m hoping to return to my job soon, but there is a lot to consider, especially because of the pandemic.

I don’t know anything about my donor and I don’t feel ready to find out yet. I’ve started to write a letter to the family, but that’s been difficult. The words ‘thank you’ don’t feel enough, not for giving me my life back.

Read Paula's transplant story >>> WINTER 2018 emphasis 25

Quad bik with the ing family

Paula ing recover ital in hosp

With her husband and son outside hospital

Paula Massie

from Aberdeen received a double lung transplant in 2019, ten years after being diagnosed with idiopathic pulmonary arterial hypertension. She wanted to share her story to get people talking about this important issue – no matter how uncomfortable it feels.

We need to have more conversations about organ donation.

was 29 when I was diagnosed with pulmonary hypertension and I had my first transplant assessment three years later, but it wasn’t the right time. I was assessed again every two years and in 2018, following a sudden deterioration, I was put onto the list.

After eight years of stability I was declining. I was really poorly; I couldn’t even walk to my kitchen, I couldn’t breathe, and my heart was four times the size it should have been.

In fact, I was almost deemed unsuitable for transplant because of how enlarged it was.

The doctors at the Freeman Hospital in Newcastle, where I was treated for my PH, really put my mind at rest when I was listed. They were very open and honest about the risks, and the recovery. I knew it would be a rough journey, but I was prepared for it and I had confidence they were making the right decision for me at the right time.

false alarm that things began to feel real.

That call came nine months after I was listed, and I waited a long time in the hospital before finding out the lungs were not suitable. I was upset, but it prepared me for when the next call came three months later.

When that one came, I was sleeping. It was 2am on 9th May 2019 and before I knew it there was an ambulance at my door and I was then being flown down to Newcastle by air ambulance. It was all so quick.

At the hospital, there was a 12-hour wait until the operation.

As the day went on, I was thinking it was unlikely it would go ahead, even though I was kept well informed about the tests that were happening. It was only when I was actually taken down to theatre that I was sure the transplant would go ahead.

It’s odd because I’m normally a nervous wreck with operations and medical procedures but I had never felt so calm.

I think I was at the point that I felt so ill, so awful, that I was just relieved I was getting the chance to feel better.

I was in surgery for eight hours and there were some complications, so I was in and out of theatre a few times.

I must have been the doctors’ worst nightmare! But the transplant was a success and I was taken to the Intensive Care Unit (ICU) to begin my recovery.

New lungs, new life

Getting stronger

I

I was told that for my blood type, the average wait for organs is about two years so I decided to try and get on with day-to-day life and not spend my time simply waiting.

I continued working as classroom assistant for the first few months, until I became too ill, and it was only when I had a

WINTER 2020 emphasis 26

I was on ICU for seven weeks and it was quite scary at the beginning. I had hallucinations - which I believe are quite common - but I was looked after so well. I had an issue with numbness in my legs, which meant I had to learn to walk again, but although my recovery wasn’t the smoothest it was all worth it.

Immediately after I woke from the operation, I noticed a difference. My lips, which had always been really dry, instantly felt better and the colour of my skin had improved.

I couldn’t stop looking at my hands; the skin texture and everything had changed.

At one point during my time on ICU the nurses took me outside in my bed, just to get some fresh air, and it was amazing. It was raining, and I just lay there thinking how good it felt being able to breathe.

My family visited me regularly, including my husband and our foster son – who was fantastic throughout it all.

After seven weeks I was moved to a lower dependency ward, where I was encouraged to go for walks outside, and then into a ‘recovery flat’ attached to the hospital. Eventually, three months after the operation, I was allowed home – and it was here I felt my recovery accelerated.

Life is so different now. I can now enjoy going for a walk, rather than everything feeling a chore like it did with PH. I always had that tight squeezing feeling and at one point you could see my heart beating through my armpit. Now it has shrunk back to the size it should be. It’s quite amazing.

I’ve even been quad biking, and not having the pump or having to make up medicine all the time - and deal with the side effects - feels amazing. Now I can just take my anti-rejection tablets and get on with my day.

It’s given me a freedom I didn’t have before.

Although I’ve been left with some wheezing, I’ve only had minor problems with rejection and the incision wound hasn’t caused me any issues. I have a seven-inch long scar and I feel proud of it. It’s a sign of what I went through, a challenge I overcame, and I don’t want to hide it away.

Finding the right words and having the right conversations

I turned 40 in January this year, with new lungs. I always used to joke with my doctors that life began at 40, so that’s when I wanted my transplant. Without it, I don’t think I would have reached that milestone.

It felt amazing not only to see that birthday, but to feel well enough to celebrate it too.

All I know about my donor is that she was a woman who was 56 when she died. I recently wrote to her family, as lockdown felt like the right time, and now I just have to wait and see if they want to write back.

There are no words that can describe how much I appreciate the gift my donor gave me and that’s what was so hard about writing the letter - the words ‘thank you’ are just not enough.

She gave me a life.

In March next year the opt out - or ‘deemed consent’ - system will come into force in Scotland (it’s already in place in England and Wales). This means that unless you declare otherwise, you will be deemed to have no objection to your organs being donated after you die – but what many folk don’t realise is that it’s still the family who are able to have the final say. And that’s why having conversations is so important.

Organ donation is a subject people don’t seem to like talking about; they seem uncomfortable speaking about death. But we need to start having these conversations, as it’s going to happen to all of us eventually.

If we talk about it, we can find what people’s views are.

It must be very difficult for a family having to make a decision

about a loved ones organs without knowing what they would have wanted.

It’s about removing that fear, and it’s about educating people about the benefits of organ donation. It’s an uncomfortable thing to talk about but the more we do it the more it will become normalised.

Helping others

Having a transplant is quite isolating because some folk think ‘that’s it, you’re cured’, but it’s not as simple as that.

It’s a lifetime of going back and forth to clinics, for checks, and watching everything. A doctor told me it’s like trading one thing for another, and you’re certainly not free from hospital appointments.

It’s good to tell people the positives of transplant but it’s also important that people are aware of the complications too. But if you’re living with pulmonary hypertension you’ve already been through a lot - so you’re strong enough to deal with a transplant if it comes to that.

As well as raising awareness of organ donation I’m now trying to set something up to support other people going through transplant. When I came back home from hospital I realised how little there was around me in the way of support groups, but I’ve managed to link in with people by sharing my story in my local paper.

I don’t have pulmonary hypertension anymore, but I still want to help people who do. I’ve made so many friends through the PHA UK Facebook group and it has been a lifeline.

It was actually through that group that I realised transplant was an option for some people with PH, as I watched others going through the journey. I don’t remember my medical team mentioning it to me when I was first diagnosed as I was concentrating on coming to terms with the diagnosis and learning to live with IV medication. I now really want to support other people with PH who may be facing a transplant.

Paula today

If you would like to contact Paula about her transplant, please email media@phauk.org and we will pass on your message.

WINTER 2020 emphasis 27

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Actelion Pharmaceuticals UK Ltd sponsored the production of this educational resource, with no influence on the content.

Free com ABLE ! i help litt c books to le ones w it h PAH und erstand their co ndition

WINTER 2020 emphasis 28

Go to ww to order w.phauk.org y while stour free copy

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WINTER 2020 emphasis 29

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WINTER 2020 emphasis 30 42

Q &A W E R C F A E L N E E GR

Coco Praest

Six-year-old Coco Praest has PH and lives in London with her parents and twin sister Aika.

Q. What is the best thing about having a twin sister?

A. She gives me cuddles and she loves me.

Q. What do you like doing at school?

A. Playing with Lego and reading books.

Q. What do you like to do at weekends?

A. Relaxing, resting and playing with toys.

Q. What is your favourite food?

A. Tomatoes and cucumbers Q. What is your favourite game to play in the house?

A. I like playing with Sylvanian families, Lego Friends and playing the neighbours game from the cartoon Bluey.

Q. What is your favourite game to play in the garden?

A. Magic statues with my Mama and also shadowlands and games from the cartoon

Bluey. And I like making sand food in our outside play kitchen.

Q. Do you have a favourite book?

A. My favourite book is The Twits by Ronald Dahl.

I like the monkeys and the plan for the Twits.

Q. Do you have a favourite TV programme?

A. My favourite TV show is Paw Patrol and Marshall is my favourite character.

He’s a Dalmatian and is clumsy and funny.

Q. If you could have any superpower, what would it be?

I A. would like to be able to teleport from this place to that place. I would like to go to Saturn because it’s my favourite planet. I love space and want to be an astronaut with my twin sister when I’m a grown-up.

Coco and her twin Aika Saturn

WINTER WINTER 2020 2020 emphasis emphasis 43 31

t a h t s d n e i r f “I tell my s g n u l y m n i m e l b o r p I have a ” x fi t ’ n a c s r o t c o d e h t t a th With my favourite nurses

Doing critaaflts in hosp

Hollie Beattie is seven years old and was diagnosed with PH in April this year – just as lockdown began.

She has had many stays in hospital, both where she lives in Belfast and at Great Ormond Street in London, and she is now waiting for a double lung transplant. Despite all this, Hollie’s mum Marion says she remains positive and upbeat. Here, she shares her hospital experiences in her own words to help other children with PH.

"It was very scary going to hospital at the start because I had never stayed in hospital before. Mummy said I had when I was a baby, but I couldn’t remember that!

My Mum, Dad and I had to go to London in an Air Ambulance. It was a very

WINTER 2020 emphasis 32

small plane and there was no toilet. Then it was an ambulance straight to GOSH. It was scary, but exciting at the same time. It was my first time in London.

While I was in hospital I enjoyed doing arts and crafts.

The play specialists would bring me lots of supplies.

GOSH TV had a movie on every night, I watched Frozen 2 three times ! In hospital, I made a friend called Harry, he taught me some magic tricks. One Saturday we did a magic show for the doctors and nurses!

My favourite food in hospital was definitely pizza !

fter " When I woke upaas very my procedure I we pizza hungry and th d!" tasted so goo I also really love the toast in hospital, for breakfast and supper!

Beccy and Tizzy were my favourite nurses in hospital, they came to see me every day.

Tizzy played with me a lot and even stayed late the day I had my procedure, to make sure I was ok. One day she took me for a walk and we got ice cream.

During lockdown and while I was in hospital I used Zoom a lot. My gymnastics friend Annamae and I would practice together and also play with our dolls. All the nurses got to know Annamae because we would call each other every

day. We also did family bingo every Saturday night. I really enjoyed that because I won some money and spent it on new gymnastics bars!

Sometimes when I’m playing, running about and cycling, I get out of breath quickly.

This makes me worry because I have fainted three times.

I have to stop and get my breath back. I feel lucky because most of the time I feel well.

I have learned some breathing exercises since being in hospital. I do ‘cool down’ breathing and it helps me get my breathing back to normal.

When my friends ask what PH is I tell them I have a problem in my lungs that the doctors can’t fix."

Practisin gymsnastgics In my school uniform

With my brother Ethan

Making the most of

remote appointments

Most specialist centres and other medical providers have temporarily moved away from face-to-face appointments due to the ongoing coronavirus pandemic. You may find conversations with your PH team now happen via the telephone, or online via a video calling platform such as Zoom. It’s important to prepare for these remote consultations in order to get the most from them. Here are our top tips…

Think ahead

✓ If your appointment is on your mobile phone, make sure your battery is charged and that you take the call in an area where you have good signal. ✓ If you are using a laptop or tablet, again, make sure it has full charge or that it can be plugged in during your appointment. ✓ Check the sound works, and if you’re using a camera, check that works too. Perhaps you could do a ‘trial run’ with a friend or family member in a different household?

Create a quiet space around you

Ideally you should be in a quiet room, free of distractions. ✓ If you are expecting a parcel delivery, you might want to attach a note to the front door asking for it to be left it in a safe place instead of knocking. ✓ Consider your appointment time when booking supermarket delivery slots :-) ✓ If your appointment is online, pop your mobile phone on silent and unplug the landline. It might be worth letting friends / family know when your appointment is so they can avoid trying to contact you during this time.

✓ If you live in a busy house, especially one with young children or noisy dogs, you may find it easier to sit in your car during your appointment.

We’ve put together a special form to help you plan for your remote appointment. It includes sections for listing medication, logging hospital stays or medical episodes, and writing down questions. It also features a copy of the EmPHasis-10 questionnaire, so you can fill it in ahead of your call.

Consider comfort

Appointment lengths vary, but if you’re sitting somewhere for a long time, it’s important to be comfortable. ✓ Think about where you sit – do you need a hard surface to make notes?

Do you need a cushion? ✓ If you’re using the camera or video function on a laptop, you might want to place it on top of some books so it is the right height for your face to be seen. ✓ Have a glass of water or a cup of tea within easy reach.

Download the form from www.phauk.org or call emPHs 01709 is 76150 for a copy. You can also email office@phauk.org

10

Flag up any worries about your appointment as soon as possible

If you are concerned about how your virtual appointment will work, please contact your team as soon as you can.

They can help you with any worries and ensure your consultation runs as smoothly as possible when the time comes.

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WINTER 2020 emphasis 33 368

IZZY SHARES HER CTEPH STORY...

“It was frightening knowing there was something wrong but not knowing what it was�

For student Izzy Scott, the road to diagnosis was long and frustrating.

She shared her story during PH Week to help people understand more about Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and the operation that saved her life.

WINTER 2020 emphasis 34

Izzy with a photo of the clots that were removed from her pulmonary arteries

I

spent a year going back and forth to my GP because of breathlessness that kept getting worse. I was out of breath walking across my university campus, and I would have a tight chest that was painful too. I just couldn’t get oxygen in.

I was diagnosed with asthma, so I went through all the inhalers, and all this time I was getting more and more breathless. People started to notice how often I had to stop, even walking on flat surfaces.

I was then told by my GP that it wasn’t asthma, but that it was all in my head - and it was anxiety and stress causing my breathlessness.

I carried on with things as best as I could. But my lips started going blue after I climbed the stairs, I started getting palpitations, and it got the point where I couldn’t even put my socks on. Even standing up and cooking would exhaust me.

It was frightening knowing there was something wrong but not knowing what it was. I was getting worse, but had no idea why, and my GP didn’t seem concerned.

In December last year I went to visit my parents and they saw how exhausted I was just going to the toilet, so they insisted I saw an out-of-hours GP there and then.

A blood test showed I had clots and a chest x-ray showed my heart was enlarged. I was admitted to my local hospital and then transferred to a specialist centre where I was diagnosed with CTEPH. I had never heard of it before. On the one hand it felt like a weight had been lifted to finally have a diagnosis, and confirmation that it wasn’t all in my head. But on the other hand, it was scary.

The option of a pulmonary endarterectomy (operation to remove the clots) was discussed, and I was told it was major surgery, but that it would give me a chance of a ‘normal’ life.

I had no reservations, as I didn’t want to spend my life feeling breathless.

I was in hospital for three weeks before being discharged for Christmas and managed to carry on studying before my surgery in August this year.

I had time to come to terms with what would happen during the operation but because of COVID-19 visiting restrictions, I was totally alone.

I was on my own in the hospital for three days before the surgery and it was really hard thinking that if I didn’t wake up, the last conversation with my family would have been via FaceTime.

The surgery went well but I stayed in hospital for three weeks afterwards because I had a brain bleed. I cried when I went outside for the first time to breathe the fresh air and feel the sun.

On a walk after her op

"I am always wonderin g how different thing s ma y have been if it had b een detected earlier" Recovery has gone well and it’s insane how much better I can breathe now.

I want to raise awareness of CTEPH because I had no idea of what it was before it happened to me and young people especially are not always aware of what could happen. It’s a complicated condition to explain to people.

I am always wondering how different things may have been if it had been detected earlier. Would it have got to the point of needing surgery?

I went through a year of going back and forth with my GP and even after diagnosis I still encounter medical professionals who don’t know what it is. I understand it’s rare, but it can kill people. Ultimately, my operation saved my life.”

w Izzy appeared on the Channel 4 sho York io Steph’s Packed Lunch and BBC Rad story to talk about her experiences. Her r and also made the Daily Mirror, Daily Sta . per the front page of her local newspa

WINTER 2020 emphasis 35

Our sister website to help you live well with PH

Our online resource is designed to support you with all aspects of life with PH, including:

• Relationships • Exercise and nutrition • Complementary therapy • Mental & emotional wellbeing • Welfare and benefits • Travelling

…and much more!

REGULARLY UPDATED!

This is the site you’ll want to return to time and again for information, guidance and inspiration.

USE ON THE GO !

Accessible on your phone, ta ble laptop or desk t, top computer

y r o st

When we asked for blog submissions in the last issue of Emphasis, Salina Issory rose to the challenge and put pen to paper to tell the tale of her PH. In this blog, that originally appeared on our website in October, the 35-year-old from London looks back on her journey.

I

was diagnosed with PH in October 2017. I started to feel breathless at the beginning of that year, but I’ve always been overweight, so I just thought it was because I was unhealthy. I started going to the gym but as the months went by, I was becoming more and more breathless.

I finally went to my GP in the September and had blood tests done.

When I went for my check up and results, I was told to go to A&E straight away as my oxygen saturation was really low.

I was admitted to hospital for nine days and told I had PH. I was completely shocked and emotional - I’d never heard of this condition before.

I've been determined to make memories for myself I was put on oral medication and transferred to my specialist centre at the beginning of 2018. IV treatment was mentioned but I was adamant I wouldn’t need it. Unfortunately, my PH became more aggressive and life was getting harder, so I went onto IV treatment in the July.

I had to stop work soon afterwards as I couldn’t cope with the side effects and I do still suffer with them - but I do have good days too where I’m able to be active and feel that bit more ‘normal’. I’m super grateful for those days!

I’m thankful more than ever for the support I’ve got from my family and friends, namely my mum and my brother. They’ve been there with me every step of the way and I couldn’t have got through this without them.

They’ve seen my life change completely; however I have been determined to make memories for myself. I’ve had a great family holiday in Mauritius, and I’ve been maid of honour at my best friend’s wedding in Dominican Republic. I haven’t had as many nights out as I did before but when I do get the chance, I make the most of it - and cocktails are usually involved!

I’ve got used to having this condition now, and with the amazing help and support from my brilliant PH team I feel more confident in myself and like I’m ready to go back to work. I’m actively looking for a job and hoping something comes through soon.

I’ve also lost around 12kgs since being on IV, which I’m super happy about!

Although my appetite is nothing like it used to be and there are days where I don’t feel like eating at all, I’m still a chocoholic and look forward to the takeaways on the weekends.

I’m now on the waiting list for a double lung transplant so it’s just a case of waiting for that call!

.

My 35th birthday, July 2020

um With my m o tw , 17 20 in er I months aft d se o n was diag with PH At my best friend's we dding

Making memories ce with my nie s u ti ri u in Ma

WINTER 2020 emphasis 37

PH & Pregnancy

E C R U O S E R

Supporting you to make decisions about pregnancy and pulmonary hypertension This free guide has been produced by the PHA UK to bring you the facts about pregnancy and pulmonary hypertension, and the options that may be available to you. It is vital that you speak to your specialist team as soon as possible if you are thinking about starting a family, or if you suspect you may be pregnant.

Order your FREE copy... www.phauk.org office@phauk.org 01709 761450

w e N

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first-hand experiences of different aspects of pregnancy and (names have starting a family ben changed). like to than We would k those who have share their storie d s with such honesty.

Most of all, we want you to have enough infor mation to make decision that a is right for you, partner and your situation your feel confident and to enough to start conversations with your healt those team as early hcare as possible.

Featurin interview g s with people a ffected

by PH Order now for free at www.phauk.org

You can also order by emailing office@phauk.org or calling 01709 761450.

SUMMER2020 WINTER 2020emphasis emphasis38 44

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4

5 6

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Contraception Unplanned or unexpected pregnancies Other ways to start a family: FOSTERING

Helping you make choices about

starting a family

A final word

The problem with pregnancy and PH

Planned pregnancies Other ways to start a family: ADOPTION Other ways to start a family: SURROGACY

A new publication from the PHA UK is aiming to help people affected by PH to make decisions when it comes to pregnancy.

T

he science is clear; if a woman with pulmonary hypertension becomes pregnant, her health - and that of the unborn child will be at serious risk. Based on the information currently available, one woman in five will die during pregnancy, childbirth, or in the postdelivery phase.

Therefore, the advice across the board is not to get pregnant if you have pulmonary hypertension.

However, people do have choices.

At the PHA UK, we agree with specialists that it would be best for women with PH not to become pregnant. But people make their own decisions, and accidents happen too, so we felt it was important to produce a publication that helps women and couples understand their options and what might happen in different scenarios.

PH & Pregnancy covers the facts about pregnancy and pulmonary

hypertension, provides an overview of contraception, and looks at planned and unplanned pregnancies - and the options you will have in these circumstances.

It also includes dedicated sections that explore other ways of starting a family. And running throughout the chapters are the real stories of those who have been through it all - from successful pregnancies, miscarriages, and terminations, to experiences of surrogacy, adoption and fostering.

Others explain why they have decided not to start a family at all.

They share their decisions and experiences in their own words, and we are hugely grateful for their contributions. You can read extracts from some of them over the page.

Remember that your specialist centre is there to support you and it is vital that if you suspect you may be pregnant, or are thinking about becoming pregnant, you talk to your healthcare team straight away.

“Pregnancy and parenthood are massive issues for anyone, even when you don’t have a medical condition.

Adding pulmonary hypertension makes things much more complicated.

There are so many different aspects of the situation to appreciate and options to consider. Having this booklet will be a great help to people with PH and also the medical teams involved with their care. It covers all the issues in a clear and concise way that makes things easier to understand. Having all the information written down so you can keep it will also help because there is so much to try and remember when speaking to people at appointments.

‘PH & Pregnancy’ covers many sensitive and difficult subjects in an objective and factual way, giving information and not instruction.

The patient stories are particularly powerful, and I think it is going to be a fantastic resource in the PH clinic.”

Dr Charlie Elliott, Clinical Director of Respiratory Medicine at the Royal Hallamshire Hospital

WINTER 2020 emphasis 39

PH &

Pregnancy

Real people

Real experiences

You’ll find longer versions of these stories, plus others, in PH & Pregnancy. Names have been changed to protect anonymity. We are grateful to everyone who shared their personal experiences with us.

Sarah was 20 weeks pregnant when she was diagnosed with PH. She made a joint decision with her partner to have a termination.

Andrew was diagnosed with idiopathic PAH at the age of 21 and fathered twins ten years later.

Claire became pregnant by accident and after deciding to go ahead with the pregnancy, she miscarried at six weeks.

“From the beginning of the process of being diagnosed we both agreed that my health was the priority. There was a fairly high chance that Kyle could have left the hospital with no wife or baby if we hadn’t made that decision to have a termination, and to us, that thought was not bearable.

We had lots of support from my specialist centre, who dealt with our case with such compassion, empathy and professionalism. They made us feel as comfortable as possible during the most difficult of times and treated our family in the same manner.

About a year after my diagnosis I attended a clinic appointment and felt mentally and emotionally ready to have a conversation about what my future held in terms of family planning. I was advised that surrogacy or adoption would be our safest adoptions and so we decided to explore surrogacy.”

“I met my partner a couple of years after I was diagnosed and a few years after we got together, we discussed having a family.

I felt a little anxious about it initially.

We had difficulty conceiving, but that wasn’t because of my PH; the doctors at the fertility clinic explained it was mostly down to bad luck. After over three years of trying, we went through IVF and became pregnant with twins.

I do worry about my PH getting worse and the effect that may have on us as a family. I want to be a fun father, chasing my daughters around the park and playing games with them.”

“I was 17 when I was diagnosed with PH and at every specialist centre appointment, I was advised not to get pregnant.

Ten years after I was diagnosed, I met my husband. Having a child was not in our plans so it was a shock when I found out I was pregnant.

My specialist centre asked what I wanted to do, and I said I knew I had to get rid of it. When I was told I didn’t have to, I was floored.

James and I decided that we would go down the route of keeping the baby. Everything was fine until at six weeks I miscarried. I don’t want to become pregnant again. I can’t put myself through it all again mentally.

My advice to anyone with PH who finds themselves pregnant is to speak to your specialist team. Don’t be scared; you will get the support you need. But it will be hard whichever route you go down.”

WINTER 2020 emphasis 40

Daisy had her first child a few years after being diagnosed with PH and is now pregnant with a second.

Holly and her husband underwent IVF and used a surrogate to carry a baby that is genetically theirs.

Vidya and her husband adopted a baby after deciding it wasn’t safe to have their own.

“I was 25 when I was diagnosed and one of my first questions was whether I could have children.

Straight away, I was advised not to.

I wasn’t in a relationship at the time, but a few years later I met my partner. I always knew that despite that initial conversation at diagnosis, I would re-visit it, and my partner said he would support me in whatever I wanted to do.

I was a firm believer that everyone’s PH is different, and I was always clear that I knew my body and what it was capable of.

I saw an obstetric physician and made lots of different drug changes.

My specialist centre was also involved the whole way through.

I was induced at 37 weeks and had no problems with delivery.

When my son was a year old, we decided to try for another baby. We started the whole procedure again; changing my drugs and having a further right heart catheter to check that I was well enough to go through it all again.

I feel that as long as I have the support in place, I will be ok. And if at any point during the pregnancy I was at risk I would put myself and my family first.”

“Ultimately, it took two IVF cycles, and three transfer procedures with our surrogate to achieve a pregnancy.

There were a lot of highs and lows the entire time; it was definitely an emotional roller coaster. I chose to go down the route of IVF and gestational surrogacy since I wanted a child that was biologically mine. However, there were times my husband and I looked at other options more closely when we ran into obstacles.

If you want to consider the IVF route I would advise discussing it as soon as possible with your PH doctor to understand how it might affect your health. Understand the statistics of IVF, and the low chance of success of each treatment. It is not guaranteed to work on the first, second, or even third attempt! This can be a very draining process emotionally, physically, and financially.”

“Some of my family knew about our decision, but because of the Asian culture, we got a lot of questions about why we weren’t having a child of our own.

When we were approved for adoption, we were very specific about wanting a baby as young as possible so that it would grow up knowing that mummy has a health condition and can’t do as much as others.

We were worried an older child wouldn’t understand.

Because of this, it took a long time to find the right match. At times we got really disheartened about how long the adoption process was taking but what kept us going was knowing we had each other and that eventually we would have a family. Now we have a son.

My advice to others considering adoption is to talk to your specialist PH team about it. Be honest about being able to look after a child but be realistic too. Adil and I focused on keeping me going and that is why we wanted to adopt.”

If you would like to share your own thoughts or experiences about pregnancy, we would love to hear from you. You can remain anonymous if you wish. Please email office@phauk.org or call 01709 761450

WINTER 2019 emphasis 41

s u c o f CELENG G N I S I A Family Matters R D N U F

South Downs Relay 2020 style

£ 2385 RAISED

As well as the PHighter 20 challenges for PH Wee k, you’ve been busy doin g all sorts to support us over the last few months. As a difficult year draws to a close, we’d like to say a huge thank you to everyone who ha s raised money for us in 2020.

You really are amazin g!

A group of friends from Hampshire raised thousands when they completed 77 hideously hiily miles of the South Downs Way in September. Taking on 11 miles each, the seven exchanged a regularly-sanitised baton and clocked up the km in memory of Will Acres. The super seven who took on the challenge were: Stephanie Hughes, Ella Croucher, Sam West, Kit Edwards, Benny Bruce, Annie Acres and Marcus Duffy.

Gemma’s 3 Peaks challenge Gemma Hurt and four friends took on the Cheltenham Three Peaks in September, climbing almost 3000ft and covering 22 miles in just one day.

Gemma said: “I am not physically fit and the

longest walk I had done before was about 10 miles a few weeks before. What got me through the seven hours of walking, the pain and the tiredness was the fact I had raised over £1,000 for the PHA UK which was so motivating!

This is so important to me as my Dad was diagnosed with pulmonary hypertension in 2015 and went on to have a pulmonary endarterectomy. Through all of this the PHA UK has been a great source of information and support for our family.”

£ 3AI9SE0D R

The team from L-R: Ariadna Marquez, Gemma Hurt, Kristina Tailor, Jessica Morgan, Sophia Brumann

OVER

£1A0IS0ED0 R

Online raffle for Derek

Supporter Pauline Stirrat didn’t let coronavirus restrictions get in the way of fundraising in memory of her father Derek Rennie. She organised an online raffle, sourcing prize donations and charging £2 per ticket, to raise a total of £390. After a delayed PH diagnosis, Derek died in 2017 and his family are committed to helping others in his memory. Pauline said: “Our aim is simply to increase awareness, increase support, and find a cure.”

2019 emphasis WINTER 2020 emphasis 22 42

Gemma's father and sister cheering them on

J

£1410

osh wauilt.

Josh had a grean.

RAISED

FUNDRAISING

Third time lucky for Sophie

When Sophie Morris originally signed up to do the London Marathon, she never imagined she’d be running it alone, with her training curtailed due to contracting COVID-19. Initially postponed until October, it was then cancelled for non-elite athletes altogether - so Sophie ran all 26.2 miles on her own instead. Sophie’s efforts have raised over £1400 in memory of her friend Maddy Hardman. Taking to Twitter after completing the miles, she said: “A huge thanks to everyone who beeped their car horns and gave me a cheer/thumbs up in the rain today.

The atmosphere truly felt amazing despite me running on my own in the horrid conditions… Mads, I hope me running 26.2 miles in the rain and gale-force winds gives you a laugh up there!”

UPDATE...

As the last issue of Emphasis went to print, PHA UK member Graham Timbers was preparing to cycle the length of the country with friends Richard Mills and Paul Butler. Not only did the trio complete the 1000 miles from Lands’ End to John O’Groats, but they also raised a staggering total of £12,826!

26 8 , 2 1 £ SED RAI

ON YOUR PHONE

You can now make a donation to our charity simply by texting a special number. It’s safe, convenient and hassle-free, with the donation showing up on your next phone bill.

Text PHAUK followed by the amount in pounds you would like to donate to 70085 So if you would like to donate £5, text PHAUK5 If you would like to donate £10, text PHAUK10 You can choose to donate however much you wish and it’s also a convenient way of paying in your sponsorship money following a challenge.

Texts cost the amount you donate plus one standard rate message and you’ll be opting in to hear more about our work and fund raising via telephone and SMS. If you’d like to make a donation but do not wish to receive marketing communications, text PHAUKNOIN FO followed by your donation amount to 7008 5 instead.

lanning. p e ’r u o y t a h w w t us kno Don’t forget to le 01709 761450 n o s u ll ca , rg .o k au Email office @ph r Instagram cebook, Twitter o or tag us on Fa

WINTER 2020 emphasis 43

You're not

on your own

!

Our private Facebook group enables you to talk directly to other people affected by pulmonary hypertension

• Safe forum to discuss the things that are important to you

• Only members of the group can see who is in the group and what they post

• Moderated by the PHA UK

Want to join the community?

1. Log into Facebook and search Pulmonary Hypertension Association UK – official facebook group 2. Click the + Join Group button at the top of the page 3. You’ll be asked a few screening questions – check your Facebook messages and don’t forget to check the ‘others’ folder 4. Once you’ve answered these questions, which are designed to protect privacy and make sure only people affected by PH are part of the group, you're in!

5. Post questions, comment on other posts, or simply read what other people write.

Use the forum your way.

OVER 1,400

GROUP

MEMBERS!

BECAUSE YOU CARE,

WE CAN

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We rely heavily on donations and fundraising to help us support people affected by pulmonary hypertension and we are grateful for every penny we receive. As well as our thanks, we think it’s important to give you information about how your donations are used. This is an overview of our charity activity between May 2019 and May 2020.

Support to Specialist Care We have funded a part-time specialist physiotherapist to support PH patients at the Royal Brompton Hospital; held training days for primary care professionals; facilitated multi-centre meetings to discuss services specifications; provided access to our on-site meeting facilities, and provided 65 bursaries for our medical education programme. We have also continued to provide ongoing support for the PH Professionals Group and offered educational and travel grants to clinical staff working in the field of PH.

Research Work in this area has included conducting a major piece of research into the emotional impact of pulmonary hypertension; facilitating research around treatment delivery; supporting the National PH Research Forum, and partnering with researchers to plan a study into helping people with PH manage anxiety.

Membership Support This has included our national member conference, ongoing partnerships with Anxiety UK and Turn2Us, and support via telephone and email.

We’ve produced four issues of Emphasis magazine; published three support books about children and PH, contraception, and intimacy, and collaborated with the DVLA to support people with PH around changes to driving regulations.

We made a huge effort to support members through the early stages of the pandemic. We posted information and support packs to each member, produced online resources and support materials, created a new website area - reviewed and updated daily - and provided 24/7 advice and information via our social media accounts. Office hours were extended into weekends so members could contact us seven days a week.

Raising Awareness of PH and generating funds This included our fourth annual PH Awareness Week, media relations and social media and the production of short films. In the summer of 2019, we partnered with the British Transplant Games and World Transplant Games to raise awareness of both PH and organ donation.

We have also provided support and administration for multiple fundraising initiatives.

General Running Costs A small amount of our income goes on general running costs to keep the charity operational. Our office in Sheffield doubles up as a resource centre, which enables us to deliver educational workshops to medical professionals.

It also hosts meetings between specialist centres and provides a northern base for collaborative working with national partners and commissioning bodies.

14% 18% 39% 24% 5% WINTER 2020 emphasis 45

Hospice care and PH Far more than ‘a place you go to die’, hospices provide valuable palliative care to people diagnosed with a progressive condition like pulmonary hypertension.

Mary Ferguson reports.

T

he hospice movement is over 30 years old, but misconceptions abound, and sadly, a lack of understanding is stopping some people accessing the life-enhancing care these places can provide.

Hospice care transforms hundreds of thousands of lives every year but many wrongly assume that being offered it means they are about to die. Others imagine gloomy, depressing places reserved for the sickest of the sick.

Neither of these things are true.

Hospice care is truly holistic, looking after physical, emotional, social and spiritual needs; and as result, the services they offer are wide-ranging.

Hospice care can include symptom management and pain control; complementary therapies such

WINTER 2020 emphasis 46

as massage and aromatherapy; counselling and psychological support; practical and financial advice; physiotherapy and occupational therapy to help people remain independent; spiritual care and companionship support.

FACT:

at least There are olunteers 125,000 v s g hospice supportin .

K ut the U througho of their The value mated on is esti ti u ib tr n co 00 e than £ 2 to be mor r a c h y ea * million e

The vast majority of these services (83%) are provided in community settings and most people receive support from a hospice whilst they are living at home.

This can include attending ‘day therapy’ support and whilst the coronavirus pandemic has temporarily limited some of these services, many have adapted to virtual consultations and online get-togethers.

Inpatient units remain open for short stays and many patients benefit from the symptom control support they provide.

Hospice UK is a national charity that supports hospices and those who access the care provided by them. Melanie Hodson, their head of information support, told Emphasis:

: FACT ospices

h itable funded Cha r a re e UK unity in th omm c y op s b ly t y sh i r a ma in h g, c s. raisin e lotterie g c f u nd i p os nd i n a n d h ve N HS f u o s s i r re c e ie s a c Some i s va r h t t u ns* too, b reg io

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CT: T t h a n h er e a r e m 210 h UK, ospi ore ca r i c es i n n t he adu g for 20 lts, c 0,00 h 0 i ld a nd babi ren es* FACT: y of

“Hospice care is focused on the person and their family; from managing someone's pain, to looking after their emotional, spiritual and social needs, hospice care supports the whole person, helping them to live their life to the full. It’s an approach that focuses not on what is the matter with you? - but instead asks what matters to you?”

Hospices provide care for those around the patient too. Counselling services (without the long waiting lists often encountered via other routes) are often provided for partners and relatives, as well as complementary therapy services to aid general wellbeing.

Some people receive hospice care for many years and relatives can continue to access support long after their loved one has died.

Melanie added: “Sometimes, people have concerns about accessing hospice care, thinking perhaps that hospices are all about support in the very final days of life. In fact, the availability of hospice care is dependent on need rather than prognosis. This means that people can use hospice care at any stage of their condition, not just at the very end of their lives.”

There are over 200 hospices in the UK. You can find your nearest one by visiting www.hospiceuk.org

ajorit T he m 3 %) i s c a re ( 8 e c i ityp s ho mmun g o c n i ed cludin p ro v i d n g s, i n c e i t t e s o sp i ba s e d care /h ient home at e, outp at hom nd hospice es a s er v ic re* day ca

Over the page, four PHA UK members share their experiences of hospice care…

*Source: Hospice UK

“People can use hospice care at any stage of their condition, not just at the very end of their lives”

WINTER 2020 emphasis 47

Hospice care and PH

Fiona Ballantyne from Falkirk in Scotland lives with pulmonary arterial hypertension and pulmonary fibrosis. She has been accessing services from Stratchcarron Hospice since the end of 2019.

“When hospice care was first mentioned I was shocked, but the first time I visited the hospice I was surprised by how nice, cheerful and friendly it was.

I went to what’s known as ‘day therapy sessions’ every week until lockdown began. A volunteer driver would pick me up with my oxygen tank and my handbags and the first thing I’d do when I arrived was sit and have a cup of tea with everyone.

At any one time there would be between ten and 20 of us in a group, all with different health conditions.

A lot have cancer, and a few have breathing conditions, such as COPD. It’s a real mixture.

We could then choose what activities

we would like to do; anything from crafting to nail treatments and complementary therapies. I’ve had massages there that have felt like counselling sessions because you can just talk to the massage therapist.

They just listen, and sometimes that’s exactly what you need.

The care continued even through lockdown. We’ve had group chats via Zoom, and the hospice even sent us tea and biscuits out to our houses so we could all enjoy them together.

We’ve been sent craft projects too.

And when I was in hospital having my IV line fitted, they contacted me every week to see how I was. I’ve made a lot of friends through the hospice.

People hear the word ‘palliative’ and

Kim, 52, lives in Bedfordshire and has pulmonary arterial hypertension. She receives care from Keech Hospice in Luton.

“It was my PH specialist who initially suggested I might benefit from hospice services. I think my face said it all, but he assured me it was palliative care, not end-of-life care.

It was 2017 when I first started attending the palliative care centre at Keech and I initially went for 11 months, to help with my anxiety. I was always welcomed with open arms.

Everyone had such a laugh; it’s amazing what they do. I would have a weekly one-on-one chat with the nurses about any problems or niggles and would be able to see the on-site doctor if I

WINTER 2020 emphasis 48

needed to. Everything was taken care of.

There is even a hydrotherapy pool, music therapy and complementary therapies like reiki and reflexology.

Lunch was always fantastic, and we would all sit and eat together round the table. In the afternoons we would sit and chat, and not just about our illnesses. It was just a very relaxing place that I felt safe in.

I also joined the hospice walking group, and it was amazing how much I gained mentally from going for a walk and doing more than what I thought I could. We all felt we were on the same

all they hear is ‘end of life’. But hospice care is such a positive thing, and I’m really missing being able to go to my weekly sessions.

If you are offered hospice care, my advice would be to grab it with both hands. Take any help that you’re offered. As my father would say, refuse nothing but blows! It’s taken me a long time to learn to accept help.”

level, even though we all had different illnesses. We all encouraged each other, and I made friends with quite a few people.

I have some really good memories of my time at the hospice. Everything was focused on the positive; our illnesses were nothing to be ashamed of.

After 11 months it was felt that I had benefitted enough to move on and manage the anxiety around my condition myself. But I did go back again for nine months and the door has been left open for me to go back again if I need it.

Everyone has that perception of what they think a hospice is like.

But mine is the most upbeat, positive place you can walk into, and that’s what shocked me - in a good way!”

Lorretta Walsh is 58 and has PH in association with connective tissue disorder.

She has been supported by St. Catherine’s Hospice in Crawley since March.

“I was diagnosed with PH in February 2019 and a year later, my specialist suggested I talk to the palliative care team at the hospital.

I was horrified. My immediate question was whether that meant I was going to die, and I assumed there was something they weren’t telling me.

But everything was explained to me, which made me feel much better, and I was referred to my local hospice – who have been absolutely wonderful.

It was just after lockdown started so some of the support was remote.

I had counselling sessions over the phone, which really helped me come to terms with my diagnosis.

I had physiotherapy sessions in my home (with strict COVID-19

guidelines followed) which helped with my mobility issues caused by breathlessness and the tight skin as a side effect of scleroderma.

I saw the lymphoedema nurse onsite at the hospice to help me deal with the swelling in my legs (a side effect of both sclereoderma and cancer treatment I had before I developed PH). It has to be closely monitored as it can turn into fluid retention. I was surprised by how warm, cheerful and non-clinical the environment was.

Visits were followed up by telephone calls and the hospice do keep in touch via telephone on a regular basis. It's good to know I can always phone them too and someone will always get back to me.

The hospice has also been instrumental in managing my pain relief and liaising with my GP, and overall, I have found their help and support invaluable. The hospice care complements the care of my specialist centre very well and they offer support for family members too. My partner doesn’t need it now, but it’s very reassuring to know that it’s there if and when he does.

I think it’s important that people realise there is a difference between palliative care and end-of-life care.

People automatically think hospice care equals cancer and death, but it’s not just about people who have cancer and it’s not just about dying. It’s about helping you make the most of each day.”

Julie Eastwood’s mother Rena had PH and spent two weeks at St. Catherine’s Hospice in Preston for symptom management.

“After a couple of months of having home visits from hospice staff, Mum had a two-week stay in the Inpatient Unit while she adjusted to new drugs.

She had been prescribed morphine which helped her breathing but had nasty side effects, so they wanted her to go in and be monitored closely while they tried something else.

She was very scared about going in at first and didn’t want to leave her cat, but she came around to it. We could all see her anxiety was at an all-time high, as well as her physical symptoms being bad, and she needed a break. She was very tired.

When she first went in she was like a rabbit in headlights, but as the days went on, she started to relax. The staff were all so cheerful and had Mum laughing and joking with them. After two weeks, she came home and was so much better. She was so relaxed, and they had sorted her medication out,

which gave her a much better quality of life. I’m so glad she had that help.

I was mum’s main carer and although I didn’t live with her, I was there most days to help her, and her stay gave me a little respite too as I knew she was in safe hands.

The nurse specialist at the hospice would ring me regularly, just to see how I was getting on. Mum passed away at home, with me by her side, and the hospice later offered

bereavement support. It felt very much like they cared for me too.

I wanted Mum to access hospice are sooner as I had seen how much it helped my dad six years ago when he had cancer. I always thought a hospice was just a place you went to die, but it’s so very different.”

Look out for more on palliative care in 2021...

WINTER 2020 emphasis 49

Anxiety, worry and pulmonary hypertension

In a special article for Emphasis, trainee clinical psychologist Dr Gregg Rawlings challenges some common misconceptions about mental health and PH.

T

he term anxiety is used to describe a range of types of thinking processes, emotions, feelings and physical sensation. Anxiety is also commonly associated with particular types of coping behaviours. Challenging misunderstandings about anxiety is important as this can actually help reduce experiences associated with anxiety. Misunderstandings about common forms of distress associated with long-term conditions such as pulmonary hypertension can also cause stigma, and prevent people from talking to others and seeking help.

“I am the only one experiencing problems with my anxiety”

Many people experience anxiety to a level that significantly impacts on their quality of life. In England, six out of 100 people will experience anxiety to such a level that they may benefit from seeing a mental health professional, such as a psychologist or counsellor. In pulmonary hypertension however, up to 50 out of 100 people experience clinical levels of anxiety. Given the nature of pulmonary hypertension, experiencing worrying thoughts and feelings of nervousness is to some extent to be expected. So the take home message here is you’re not alone in experiencing anxiety!

“Anxiety is the same as worrying”

It is true that worrying thoughts are a common characteristic of anxiety; however, in anxiety that has become a problem, levels of worry can become all-consuming and typically trigger other reactions or ‘symptoms’. For example, it’s not uncommon for people to also experience palpitations, tightness in the chest, fatigue, dizziness, distressing emotions, sickness and difficulty breathing. As you may have already noticed, there can be an overlap between symptoms of anxiety and symptoms of PH. For this reason and more, anxiety in pulmonary hypertension is particularly important to address. Please do seek support if you are experiencing the reactions described above and they are negatively affecting your quality of life.

WINTER 2020 emphasis 50

“It is just my pulmonary hypertension that is the problem, not my anxiety”

Pulmonary hypertension does of course have a considerable impact on those living with the condition. As already stated, this can also increase the likelihood of experiencing difficulties with anxiety. The good news is that some relatively simple techniques can help with reducing anxiety. See page 22 for more information.

“It can be embarrassing talking to people about my anxiety”

Although as a society we have come a long way in being more open to talking about distress, unfortunately, mental health difficulties can still be stigmatised. This can make people feel uncomfortable and experience distressing emotions when talking about their mental or psychological health and wellbeing. Like most things, this can become easier with practice and time, and the benefits of discussing your anxiety do outweigh the negatives.

“People who have anxiety are weak or crazy”

Holding these beliefs tend to be linked to the stigmatisation of mental health conditions, which influences how people view themselves. In fact, it takes a lot of strength and courage to acknowledge, be open to discussing, and learn strategies to cope with anxiety. In addition, as already discussed, experiencing some feelings of anxiety from time to time is pretty much normal when living with a long-term condition like pulmonary hypertension.

“I just need to snap out of it”

Unfortunately, it is not as simple as just ‘snapping out of it’ or ‘stopping thinking about it’. To help illustrate this point, I want you not to think of a pink elephant… I bet you thought of a pink elephant. This shows us the more we

try to not think of something (such as a thought that triggers our anxiety), the more likely we are to think of it. Instead, there are a range of more helpful strategies to cope when our anxiety is causing us problems.

“Men do not experience anxiety”

While it is true that women are more likely to seek help from their GP for anxiety, men also experience difficulties with anxiety. After all, anxiety is a natural response that we all have and need as it helps keep us safe. For example, anxiety makes us worry about our health, which is why we (try to) eat healthy and keep as active as possible. The belief that men do not have problems with anxiety can be very unhelpful, as it can prevent people from seeking help.

“Seeking support or treatment will lead to strong medications being prescribed”

The choice of treatment depends on the severity of the person’s symptoms and distress. The first line of treatment is typically ‘talking therapies’ and learning how to use techniques to manage the anxiety. Importantly, these forms of treatment have been shown to be effective, and are now widely available within the NHS. So there is a lot to gain by seeking support, learning about techniques to manage anxiety, and if necessary, seeking access to NHS support via your GP.

Dr Gregg Rawlings is a trainee clinical psychologist at the University of Sheffield.

He has worked with a range of individuals in the community and NHS who have experienced mental health difficulties.

He has also published a number of studies examining the psychological impact of illness and is currently investigating how to help improve quality of life in those living with pulmonary hypertension.

In collaboration with PHA UK, University of Sheffield and Cardiff University, he has developed a self-help intervention for anxiety and worry associated with pulmonary hypertension.

Turn to page 22 for further details.

Gregg Rawlings is supervised by Professor Nigel Beail (University of Sheffield) and Professor Andrew Thompson (Cardiff University).

“There is nothing I can do about it”

It can sometimes feel like there is nothing you can do to help; particularly if your anxiety is very severe and/or you have been experiencing it for a long time. However, there are a range of interventions that have been shown to help people with their anxiety. Members of your healthcare team can provide you with more information. You can also visit the help for anxiety and worry page on the PHA UK website, where you can learn about a self-help intervention for anxiety in PH and take part if you wish.

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WINTER 2020 emphasis 51

theinterview

Pulmonary Hypertension Children’s Research Nurses

LYNSAY MACDONALD & ELENI TAMVAKI in conversation with

Mary Ferguson

WINTER 2020 emphasis 52

Lynsay and Eleni work together as part of the pulmonary hypertension research team at Great Ormond Street Children’s Hospital (GOSH).

Eleni

The pair have both worked at GOSH since 2016 and while Lynsay began her current role in 2018, Eleni started hers just this summer.

Lynsay’s background is in adult cardiac nursing and Eleni’s career path took her from Athens to London. She completed a masters in paediatric nursing in 2010 and after crossing countries, she started working at GOSH in the cardiac intensive care unit. With a passion for discovering new things, and what she describes as ‘limitless curiosity’, she completed a PhD in June 2019 and started her current role in research a year later.

Q. Can you explain more about what your research roles involve?

Lynsay: My role at GOSH is to coordinate the set-up and running of research studies related to pulmonary hypertension. I liaise with researchers throughout the UK and worldwide to help support their studies.

Eleni: My role involves the recruitment of children into studies, designed to investigate the causes of pulmonary hypertension and discover new treatments or improve the outcomes. This includes data collection, study set-up, and my favourite, lab processing.

Q. Can you tell us about any current research projects or trials you’re working on?

Lynsay: We have several studies currently running at GOSH and patients’ families may be approached by myself or Eleni if they are attending a PH clinic or have a stay as an inpatient. One study we are currently involved in is a large genetic study (www.IPAHCOHORT.com) which looks at both patients and their relatives to try to provide a better estimate of the risk of developing pulmonary arterial hypertension (PAH) in family members, and to identify new ways to treat the disease. The study started with recruiting adults with

Lynsay

Eleni in the lab

PAH and now GOSH are able to contribute with the inclusion of children. The study is running until 2022 and we aim to recruit as many PAH families as possible during this time.

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

(If there is such a thing!)

Lynsay: There is no such thing as a typical day in research, our work at GOSH is very varied. Some days we are screening patients to check who would be eligible for studies and reaching out to them. Other days we attend clinics to complete consent forms with families and answer questions they have about the studies they have been invited to. We also spend time in the clinical laboratory within the on-site Zayed Centre for Research. We process research samples and get them ready to be sent to the study that they have been collected for. We also collect and submit research data from medical records, organise the set-up of new PH studies and keep up-to-date with new and emerging PH research.

Eleni: Coming from the crazy clinical environment of an Intensive Care Unit I am delighted to say that a typical day at work starts with a cup of coffee, sitting comfortably in my office! I then have to answer countless emails, coordinate the studies, and resolve issues (which magically appear every day). >>>

WINTER 2020 emphasis 53

Q. What do you enjoy most about your work?

Lynsay: I love meeting our GOSH families and getting to know all of our amazing children. Families travel from all over the UK to be seen at GOSH. I was really fortunate to be able to attend the PHA UK Family Weekend in 2018 and it was incredible to be able to see all of our families socialise and meet there.

Eleni: My favourite part is when I meet all these wonderful families and children, and I also love being a member of the PAH team here in GOSH.

Q. And what is the most challenging aspect?

Lynsay: There are many regulations that are involved in research, so setting up new studies can be quite a complex task, ensuring that we meet the highest of standards before we can start recruiting. This can be quite challenging as it can take some time to ensure that the study is ready.

Eleni: I think what I find more challenging is asking children to give blood, which of course involves a prick. I am going back to their age, when every time I was asked to give blood for clinical tests I was screaming and kicking. However, these children are so brave - much braver obviously than me.

Q. Who or what inspires you in your work?

Lynsay: The incredible PH children I meet at GOSH inspire me to continue in research and find better way to improve quality of life and improve the treatment options that are available to them. They are full of personality and silliness, even when faced with complex health challenges.

Eleni: Lynsay. I couldn’t do anything without her reassurance and her support. And of course, Shahin (Moledina, lead clinician for the National Paediatric Pulmonary Hypertension Service). He is passionate about his job and he cares so much for children with PAH.

Q. What are you most proud of in your career so far?

Lynsay: I think I am most proud of completing my first nursing degree in 2010. That moment has really shaped me into the person I am today, influencing not only my professional career but the path which has led me to living in London and the many adventures I have had along the way.

Q. What’s the best piece of advice that you’ve ever been given, and who was it from?

Lynsay: One of the best pieces of advice I have ever been given is: ‘You can’t pour from an empty cup’. I think that it is really important, especially in recent times, to make time for yourself and do the things that make you happy. That might just be taking an extra second hugging your child or walking outside in the fresh air, but it’s important to appreciate that moment in time and the joys that small things can bring.

Eleni: The best piece of advice I’ve been given, by my parents and partner, was to fly away from home and follow my dreams.

Q. Finally, away from the hospital, how do you relax?

Lynsay: When I am not running around after my own toddler, I like to participate in long distance running events. I recently completed the Virgin London Virtual Marathon in October for the first time and would love to be able to run the London Marathon when it returns. Another goal is to complete the ‘Dopey Challenge’ in Walt Disney World, a 48.6 mile mega-marathon which is split up over four consecutive days!

Eleni: Outside of work I spend time with my two boys, and I enjoy their homework tasks more than them but I am not allowed to do them. I like to solve puzzles in my free time.

What relaxes me is the sea view, but as I cannot have this often, I relax watching TV on the sofa with a cup of hot chocolate.

.

A message from the National Cohort Study of Idiopathic and Heritable PAH study team The National Cohort Study has been recruiting adult patients and relatives since 2014 but with GOSH recruiting children we can now do further research covering all ages affected by PAH.

Since the start of the study we have recruited over 900 patients, relatives and healthy control subjects, so thank you to everyone who has helped us along the way!

One of the main aims of our study is to investigate the genetic causes of PAH, and how genetic variation affects outcome and response to treatment.

We are now particularly keen to recruit first degree relatives of patients who have idiopathic or heritable pulmonary arterial hypertension (PAH). This includes parents, children and siblings.

Relatives, whether they are adults or children, are currently invited to a yearly assessment at their nearest PH centre and we can reimburse travel expenses (children can only be seen at GOSH).

During the pandemic, we have struggled to recruit relatives, so we are looking at more alternative ways of following up both our patients and relatives for the study. This is likely to include telephone or video visits and the use of web-based platforms and apps.

If your family would like to be part of the National Cohort Study of Idiopathic and Heritable PAH please contact Eleni or Lynsay using the details below:

Eleni.Tamvaki@gosh.nhs.uk / 02074059200 ext. 38592 Lynsay.MacDonald@gosh.nhs.uk / 02074059200 ext. 38587

You can find out more about the study by visiting www.ipahcohort.com

Zayed Centre for Research WINTER 2020 emphasis 50

t n e s e r p t s e b “I t ’s t he

” f l e s y m t h g u I 've ever bo

Tess Jewson ordered an e-bike during the first lockdown and is now able to enjoy rides with her husband around the Essex countryside.

Here, she explains how she found the right one.

I

t was my husband Terry who first suggested buying an electric bike, but I hesitated at first because I knew they were quite expensive, and I wasn’t sure how well it would assist my pedaling.

Because of shielding, I unfortunately couldn’t try any out, so we went on Halford’s website and looked at the specifications of each bicycle. We knew there were two types of e-bike and we needed to make sure we chose one with a ‘continuous motor.’ This meant I couldn’t have an ‘assisted e-bike’, it had to be a full electric bike (where the motor stays on and the bicycle keeps moving even when you have stopped pedaling).

Another important specification is the pedal-assist function. I had to make sure that it stated ‘high sensitivity.’ This is very important as even though the motor keeps going once it kicks in, you don’t want to have to pedal a lot to get to that point. With ‘high sensitivity’ I only have to do a couple of pedal rotations and the motor takes over.

I also wanted a low step-through frame, as being short, I wanted an easy mount and dismount. To make it UK legal, the motor has to be 250W with a top speed of 15mph.

Terry and I searched online for a week, looking at different models, picking out the important specifications we needed and adding them to our ‘favourites’ list. We finally got our top three and I initially ordered an Apollo Women’s Hybrid E-Bike from Halfords for £800. Unfortunately, I received a phone call later that day saying it was out of stock and they didn’t know when it would be back in stock. I then chose the Pro-Rider Hybrid E-Bike.

It was £999 on the Pro-Rider website, but as I am an avid Amazon customer, I searched for it on their website and managed to find the exact one - and the last one - for £500! I was so pleased.

Fast forward to today and I am absolutely loving my electric bicycle.

I can cycle for quite a distance without getting breathless and when I have to cycle up a hill, I put the pedal-assist function on high and it takes me to the top of the hill without extra pedalling. I only cycle on my good days and when I feel well. My body and legs are tired the following day, which is expected, as I’m still using up my energy, but there is no way I’d even contemplate riding a bicycle without it being electrical.

My bike has three speed levels - low, medium and high. On low, I go at a steady pace and on high, I go at a fast pace, which is great for inclines. As my motor is continuous, my bicycle

doesn’t slow down, it keeps moving and I can continue pedalling without any resistance or just let the motor do the work. My battery also lasts for 22 miles - not that we’ve cycled that far - and it’s fully charged in only four hours.

Our dog Izzy has joined us too on some rides, as my bicycle comes with a rear pannier rack, so I bought her a dog basket. After a run around in the park, she’s more than happy to get a lift home!

I never thought I would be able to get on a bicycle again and go for rides with Terry. I feel my electric bicycle has given me freedom. It’s the best present I have ever bought myself!

.

This blog was first published on www.phocusonlifestyle.org Fancy submitting your own blog?

Email media@phauk.org WINTER 2020 emphasis 55

And finally...

If you haven’t had a flu jab, now is the time!

If you have PH, it’s really important that you get your flu vaccine.

Where?

You can get your vaccine free on the NHS at your GP surgery or a local pharmacy offering the service. Some community pharmacies now offer flu vaccination to adults at risk of flu, including people with long-term health conditions and carers.

If you have your flu vaccine at a pharmacy, you do not have to inform a GP. It's up to the pharmacist to do that.

Find out more about the flu vaccine at www.nhs.uk

free An eggis now vaccine le availab

Th the v is year, acci free f ne is also living or people wi at hig th someon h risk e from COVI D-19 ed

EEnd FR b ex te

flu ja s to all over-50 in the UK

In your spring issue of Emphasis...

The next issue of Emphasis is due out in March and planned content includes: Keeping active with PH

Help to overcome your barriers

Sleep support

Getting the right quantity and quality for optimum health

Starting school with PH

How little Abbie achieved her dream 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.

In the News - let us know if you raise awareness of PH through the media.

Little phighters - do you know a child who would like to be part of our Green Leaf Crew?

We always love to hear from you – contact media@phauk.org with any feedback or ideas.

WINTER 2020 emphasis 57

Join our PH family for free today Be part of a 4,500-strong national support network.

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Office hours: 9am to 3pm, Mon to Fri for general enquiries Tel: 01709 761450 Web: www.phauk.org Email: office@phauk.org Address: PHA UK Resource Centre, Unit 1, Newton Business Centre, Newton Chambers Road, Thorncliffe Park, Chapeltown, Sheffield, S35 2PH Registered Charity Number: 1120756 PHA UK works closely with our partners at Anxiety UK. To speak to someone about how you are feeling, call the dedicated PHA UK helpline on: 0844 332 9010 or email: phauk@anxietyuk.org.uk

PHA UK has joined forces with Turn2us, a national charity that helps people in financial hardship in the UK. The charity aims to help people in need to access support; and provides a range of information and resources on welfare benefits, charitable grants and other services via its website: www.turn2us.org.uk. Through our partnership with Turn2us, PHA UK members can also use the Turn2us Benefits Calculator and Grants Search on our website at www.phauk.org Please email us on office@phauk.org if any of the following apply to you: • Are the details incorrect on the mailing you’ve just received?

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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.

WINTER 2020 emphasis 59