Emphasis Summer 2021

SUMMER 2021

PET

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

POWER FOR PH Our new summer fundraiser

Plus...

Real life stories, research news, interviews and more

Ask the experts Your pulmonary hypertension questions answered

Understanding

ICU delirium Real life experiences & professional advice

“I embrace my condition like a friend” How Andrew has learned to live with PH

Hello Welcome to your summer issue of Emphasis.

I hope that wherever you are whilst reading this, the sun is shining and you’re feeling positive.

We’re closer to ‘normal’ than ever and there is so much to look forward to.

O

f course, it’s been a long and difficult path to get here and many of us have suffered along the way. It’s absolutely vital that the experiences of our PH community through the pandemic are captured and recorded, which is why we’re inviting you to fill in the questionnaires included with this magazine.

We want to hear from patients, loved ones and parents / guardians too, so there is space for everyone to talk to us via this survey. Please, share your side of the story and make your voice part of history.

We’ve all found different ways to cope over the last 18 months and we know that for many of you, pets have been a great source of comfort. That’s what’s inspired our new summer fundraiser, which you can read all about on p11.

‘Pet Power for PH’ invites you to take on a walking challenge with your dog or use your favourite photo to enter our online pet show for all creatures great and small. We hope you enjoy taking part!

On a very different subject, we’re committed to tackling important issues

in Emphasis, and this edition includes a six-page special feature on ‘ICU delirium’. Spending time in intensive care is challenging at best, and we know that some experience profound mental distress. We hope this feature will educate, raise awareness, and help those who have experienced ICU delirium feel a little less alone.

This issue also brings you the first in a brand new series of ‘ask the expert’ features, where we put your questions to the PH professionals working across our specialist services. Take a look at p17 and let us know if there’s a topic you want to see covered next time.

Enjoy the summer, and the simple pleasures that are ours to enjoy once more. Take care,

Share your side of the story and make your voice part of history

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

SUMMER 2021 emphasis 3

11

PET POWER FOR PH Introducing our newest, cutest fundraiser!

14

"I EMBRACE MY CONDITION LIKE A FRIEND”

How Andrew has learned to live well with PH

CONTENTS SUMMER 2021 YOUR

DOUBL

E

GOLRDD AWANING

WIN INE !

M AGAZ

17

ASK THE EXPERTS

Your questions answered by our team of PH specialists

Living with PH...

10 Here to help through difficult times

How to access our Listening Line service, available to all PHA UK members and their families

24 Living life on the transplant list

What it’s like waiting for the call and why it’s important to ask for help if you need it

42 "I saw the person, not the illness” Gillian Stewart on 11 years of happiness with partner Andrew

CIPR PRide Awards

‘Gold’ for Best Publication 2017 & 2019

This magazine is printed on paper from sustainably managed sources

52 A long path with PH

Barbara Fraser reflects on 15 years since her diagnosis of Chronic Thromboembolic Pulmonary Hypertension (CTEPH)

33

UNDERSTANDING ICU DELIRIUM It’s still stigmatised, but it’s more common than you may think

46

MY MARATHON, MY WAY

Juliet on the challenge that gave her a purpose

26

MOVEMENT FOR A POSITIVE MIND The life-enhancing benefits of qigong

Latest News...

Regular Features...

21 Survey aims to uncover

06 Emphasis Exchange

experiences of the pandemic

News, updates and your tips for cooking with PH

Our important research is inviting you to share your side of the story

22 Fundraising Focus

Our supporter packs are ready and waiting to help you make the most of your plans

29 Green Leaf Crew

breathlessness

48 The Interview

39 New packs to put the ‘fun’ into fundraising 41 Handheld fans shown to reduce

How to make the most of the devices this summer

44 Hope for the Hybrid Heart

Your skydives, sponsored walks, 48-hour running challenges and more

Researchers are working on a soft robotic heart that could negate the need for human donors

Hear from columnists Kaylee and Emily in our regular pull-out for children Meet Stuart Craig, the Clinical Nurse Specialist who swapped Scotland for the Big Smoke

k on this issue, Have you got any feedbacon of Emphasis? or ideas for future editi s 01709 761450 Let us know by emailing media@

phauk.org or calling

SUMMER 2021 emphasis 5

PH Life after loss to

ed to help has been launch p ou gr ok bo ce A new private Fa ng a loved one to others af ter losi ith w t ec nn co ppor tive group people . This safe and su on si en rt pe hy y rker and her pulmonar member Sally Pa K U A PH by d te has been crea t. with our suppor daughter A lice, and the group is the age of just 21 at ed di sh Jo n so to PH, no matter Sally's rienced loss due pe ex s ha ho w for anyone how long ago. how recently or ill be a space for that this group w pe ho e r “W : id sa Sally her, to share thei to support each ot s nd ie hers fr ot d ith an w es nnect famili memories and co d an gs in el fe s, experience PH.” enced loss due to 6620821 that have experi /groups/21530779 om .c ok bo ce .fa w is group, To join, type ww esting to join th qu re n he W r. se ow estions. This is into your web br swer the shor t qu an u l yo re su e ak ivate space for al please m ns a safe and pr ai m re p ou gr e to ensure th its members.

Popp y

R AISING AWA THRO UGH FASRENESS HI O N

a nd

Talented teen Popp y Ma side by em broidering rtin, 17, embraced he a heart an denim jac ket in sup d lungs on r creative port of th to mum Lisa her e PHA UK works at . Poppy's the Sheffi Disease U eld Pulmo nit, and a nary Vasc fter heari how it aff ular n g her talk ects peop ab le, she wa raise awa nted to do out PH and reness an somethin d show he g to r support .

SUMMER 2021 emphasis 6

her mum

Lisa

Cooking with PUL MONARY HYPERTENSION We asked our social med community for their top ia for making meals with PHtips

Sarah M

Save the date!

arshall Buy ‘cheat’ versions of garlic and ginger that’s already chopped. Also, spread the cooking out over the da y – get the ingredients ou t, prepare a few hours later, and cook a few hours after that.

ll This year, PH Awareness Week wi er. take place from 1st – 7th Novemb for Pop it in your diary and look out more information coming soon.

We are beginning to plan our be media campaign, so if you would interested in sharing your story for PH Week, please email Mary at media@phauk.org

lace I always make a batch when I cook, then freeze in ind ividual portions. Then on a bad day, I can just get on e out and microwave it.

Help us put PH under the spotlight

Steffs Wal

@busterkeat

on85 The slow cooker is my best friend ! Especially on days when I have plans through the day and kn ow that I will probably be tired later on.

Pa

ula Hartley I swear by my slo w cooker.

It’s great, especially in the colder months.

@phig

htertess I get all food, utensi ls and pans, etc within arms len gth and then I sit on a ba r stool whilst preparing the meals.

@jo.dun

bar I plan my week so I don't ha ve to cook every day. On we ekends or a day with les s activity I will make enou gh food to last for a few days. Otherwise I would live on cereal!

Margaret Pe

dley I prepare vegetables at the living room table, with the TV on and my oxygen next to me.

New patient inform ation website for tran splantation

NHS Blood and Tr ansplant have la unched a new website fo r people to gain a greater understanding of the transplant pr ocess and make better info rmed choices.

The online hub in cludes patient an d donor stories, as well as the latest transpla nt news.

It covers the six m ain organ transp la nt groups - heart, lu ng, kidney, pancre as , small bowel and liver.

Find it at nhsbt. nh transplantation s.uk /organ/

@thatguy407

ss When cooking with a wok, avoid getting the steam in your face. Allow yours elf to step back instead of being up against it.

@susanroone

yanderson I use a crockpot and air fryer to make ea sy meal and get my ‘th ings’ together near my space.

I love to cook, it makes me happy.

Judi

th Wilding When peeling veg , I open a drawer and place a tray on it to catch the peelin gs, which is the right heigh t for me.

FOLLOW US...

LHAUK Facebook @ PU uk Twitter @pha_ a_uk_insta h p Instagram @ A ORG UK YouTube @ PH SUMMER 2021 emphasis 7

Emphasis exchange uality q h g i h r o f k Trust the tic about PH ation information Patient Inform be part of The

Trusted Informati on Creator

to for people we are proud and network n o ti a At the PHA UK is n a rg o a membership port.

Forum (PIF) – ation and sup rm fo in h lt a we e working in h and resources n o ti a rm fo in g the e’re ted to ensurin andard, and w st st e h ig h We’re commit e s rthy and of th – a prestigiou o w rk a st u m tr ty re li a a u produce a PIF q h quality has earned us is th y sa ho follow hig to w d s n o ti a is delighte n a org nly awarded to tion. tick which is o ealth informa h g n ci u d ro p ed en wing a detail standards wh o ll fo l, ri p A orthy to us in ark for trustw was awarded m e d ty la li o a u cc q a K e U h T the only ick .org.uk /pif-t he PIF TICK is e T n t. li n n e o m if ss p e t a ss a t more ation. Find ou rm fo in h lt rmation or a e h ny of our info

a s edback about fe y n g our standard a e in v ld a o h h p u to t Do you men of our commit rt a P ur members. ? o s e m rc o u fr k c reso a b d e e and act on fe 709 761450.

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A modern ma for our flagsh keover ip website Our flagship w ebsite has bee

FRESH NEW LOOK SOON

n a vital sourc and guidance e of informati through the p on a ndemic, and w relaunching it e’re excited to with a fresh n be ew look very We’ve been b soon. usy working behind the sc content at ww enes to update w.phauk.org the and make it e what you’re lo asier for you to oking for. We’ find re just makin keep an eye o g the finishin n our social m g to uches, so edia channels Our sister we to discover wh bsite, www.p e n it goes live. hocusonlifest place for real yle.org, rema life stories an in s the go-to d experiences, you live well videos, and a with PH. dvice to help

We want to m a everyone, wh ke sure our websites can b ea ic aloud in 99 d h is why the content on bo ccessed by ifferent langu th can be read ages. Just clic button in the k the orange top corner.

SUMMER 2021 emphasis 8

Flowers & fam i

Dear PHA UK

ly

h the 'indoor Maureen wit hter d by her daug garden' create

I wanted to share with you a photo of an ‘indoor spring ga rden’ that my da ughter Catherine create d for me on Easter Sunday as I am unable to get outside. I am trul y blessed to have seen my spri ng flowers.

I also wanted to share with you on e of the poems that Cath erine writes and sends to me each week to help keep me positive (below).

I thought it was appropriate to go with the photograph.

Thank you for yo ur continued and devoted support at the PH A UK .

Maureen Jones

cascading e th h ug ro th d te ea cr e ar ht lig Golden globes of tranersls,ucent springtime show tiently waiting pa e th on n w do ng hi lis sp d which are sploshing an array of rainbow flowers. g as the way in ss pa w no is n tio la bu bo om ars disc So far we hope the ye we have been living, present is now giving. e th ry st pe ta ed ad re th ch ri what a strange silk n to be asked, tio es qu l ia uc cr ly al re a is at Now what is the future th will not be the past. y nl ai rt ce t os m it d an y da for it may not be to and desire, se oo ch so u yo e ur ct pi r ve te It will actually be wha ism of fire. pt ba a rs he ot r fo d an e m so r Fate may it be fo inky sky, rk da e th t ns ai ag r na lu e th of See the beauty in the eye lash head high. ur yo ld ho d an in sk ur yo le Feel the suns warmth ripp escence so alight, or flu ith w s el st pa on si vi d Love is in colour an ture in whatever fu a ith w nd ha ur yo of lm Contentment is in the pa form so bright. n those encumbering w do y la st ju d ea ah go to s Allow for the chao brace your rivers natural flow, paddles and em es are right by your on d ve lo ur yo at th e dg le ow Be comforted in theukn to go. side wherever yo may choose

By Catherine Jones

SUMMER 2021 emphasis 9

Do you need someone to PHA UK

talk to?

Listening

LINE

Our Listening Line support service gives you dedicated time with a PH professional to discuss your worries or concerns.

• Available to all PHA UK members and those close to them • One-off or weekly telephone appointments available • An impartial listening ear

Find out more or request an appointment by emailing listeningline@phauk.org or calling 01709 761450 Appointments can also be booked via our website at www.phauk.org SUMMER 2021 emphasis 10

This is not a formal counselling service and it is not designed to replace clinical advice from your specialist centre team.

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AG E T U R N T H E P H OW T TO FIND OU T YOU C AN G E INVOLVED…

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SUMMER 2021 emphasis 11

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SUMMER 2021 emphasis 12

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rg or email at www.phauk.o k al w e th r fo er Regist free Paws we’ll send you a d an g or k. au e office@ ph ce for making th of tips and advi for PH PDF, full allenge. most of your ch u’ll be taking part to let us know yo er ef pr ld ou w u If yo 709 761450 one, please call 01 ph le te by k al w in the

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launch of Pa To celebrate the ndanas, for PH A UK doggie ba on s nd ha ur yo get ith pride. friend to wear w your four-legged ese highor vibrant red, th ue bl l ya ro in e bl Availa atching collars ies come w ith m quality accessor y breed from a justed to fit ever which can be ad ne. If you prefer und to a Great Da sh ch Da re tu ia Min mply slides r, the bandana si lla co n ow ur yo to use a now for der your bandan Or r. he ot an to 1450. of f and on rg or call 01709 76 .o uk ha .p w w w just £9.99 at

your pooch pics!

We want to sesefrom your walk, or your pet ap Show us some sn see them a, and you might an nd ba a g lin el mod agazine. next Emphasis m online or in the os on social Share your phot hashtag media with the d don’t # PawsForPH an in ! forget to tag us photos nd You can also se 904 519688 07 via W hatsApp to

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Pets

E n te r o u r o n l i n p e t s h ow fo r e c r e at u r e s g r e at a n d s m a ll . . .

Send us your favourit e photo and up to 100 WORDS describi ng why your pet is so special.

A shortlist will be dr awn up from these F IVE CATEGORI ES, with the winners decided via a public vote:

Dogs

Let’s see your cute canines!

L argeal s anim Horses, s, donkey imals farm an er and oth et s p bigger

S m a ll s furrieguinea

, Rabbits ice, m pigs, m s t ers a rats, h er little and oth et s furry p

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£5

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R e pt i le s & fish

Snakes, li zards and wate r creatures

£20

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£ 2 0 vo u c h e r

fo r P e t s At H o m e (so you can tr eat your fa s are Both fundraiser d an open to anyone er tt everyone, no ma ou y n o what connecti have to PH !

s? Email Got any question g, call 01709 office@ phauk.or WhatsApp 761450 or send a 4 519688 message to 0790

ithfu friend to som ething specia l l)

Enter your pet v at www.phau ia our online form k.org before 5p m on Friday 30th Ju ly £ 5 per pet, wh . Entries cost continue our ich helps us to work people affecte to support d by PH .

SUMMER 2021 emphasis 13

“I embrace my condition like a friend” Father-of-two Andrew Sharrock was diagnosed with idiopathic PAH in November last year, after breathlessness worsened to blackouts. Medication is working well, and he knows that in many ways he has been lucky with his experiences - but he also believes his positive outlook has helped.

SUMMER 2021 emphasis 14

A

t the start of last summer, I started getting out of breath going up the stairs to my flat, which is on the second floor. I used to do high intensity cardio at the gym a lot and I was super-fit before the first lockdown, but suddenly there I was struggling to get up my own stairs. I was getting tight-chested and light-headed, but I just put it down to lack of fitness because of the gyms closing. I never could have imagined what it actually was.

By the end of July, outdoor personal training was allowed, and I started sessions to build my fitness back up.

I was in the middle of an intense workout with my trainer, when the tight chest and light head came back on and I felt dizzy and disorientated.

I had never felt anything like it. It was as if someone had got a sledgehammer and clouted me around the head with it.

I leant on the garage door and the next thing I knew I was waking up on the floor. I went to my local A&E in Southport where I was kept in for 11 days while they monitored me and carried out various tests, which showed my heart was under a lot of pressure. I was told it was surrounded by fluid, so I needed to take some time off work and rest up for a few months. I was also given a referral for an MRI scan at a specialist cardiac hospital - Broadgreen Cardiac Unit in Liverpool - which took a long time to come through.

By that point, I was starting to feel a bit better; I wasn’t so out of breath, and I thought I might be on the mend.

But after the MRI and a detailed CT scan, I was told I had an enlarged heart on the right-hand side and my cardiologist then diagnosed heart failure.

I was in tears walking out of the hospital. I had kept myself so fit and well, how the hell had this happened to me?

I was signed off work and given beta blockers, but I started getting worse.

I was getting 100 yards down the road and feeling out of breath. I knew something wasn’t right.

A couple of weeks after the heart failure diagnosis, I blacked out again after climbing the stairs up to my flat. I was with my daughter so I rang her mother who took me back to A&E and this is when things started to turn around.

Andrew in the Lake District, one of his favourite places I had another ECG, and I was told it looked like there was pressure in my lungs, and I would need treating at a specialist centre in Sheffield.

I asked for more information about what was going on, so a consultant drew me a diagram and explained that he thought it might be pulmonary hypertension. I had never heard of it, but it was explained well to me and I was told that my case was one in a million. Lucky me, I thought.

I was transferred to the specialist centre and had a right heart catheter.

The diagnosis was confirmed there and then, and I had a nitric oxide test at the same time. The pressures in my lungs dropped like a brick, so they knew what medication to put me on.

I was prescribed calcium channel blockers and sildenafil, and I was an in-patient for almost two weeks, which made a tremendous difference.

I was a different man coming out of the specialist centre to the one that went in. I noticed the difference as soon as I got home, when I walked up the stairs to my flat and didn’t feel the tight chest or breathlessness.

Most days since, I’ve been out walking, and I recently walked 23 miles in one day.

I go along the sand dunes on the coast from Southport towards Formby, often with my camera.

I feel really positive for the future.

I’m not going to take anything for granted or rest on my laurels, as I’m well aware things could get worse, but for the time being I feel that we’ve got good control of the condition.

The biggest low for me was the heart failure diagnosis. I was distraught.

But I actually felt reassured when I was told I had PH, because it was the right diagnosis and I knew the specialist care was available.

I know I’m lucky that the diagnosis came quite quickly. For that, I would like

to dedicate special thanks to the team at the Sheffield Pulmonary Vascular Disease Unit, the cardiology ward and ward 9A at Southport Hospital, Broadgreen Cardiac Unit in Liverpool, and Damian Moore MP - as they have all been major players in my condition being diagnosed.

I am a positive person and I do think that’s helped me over the last few months.

The fitness I had before my diagnosis has helped too, and I had a good diet – as good as possible whilst doing shift work at a crisp factory anyway!

Now, I embrace my condition like a friend. Wherever I go, it’s going to be with me, so I just accept it for what it is.

Southport Pier

Aira Force, Lake District

With an attitude that ‘you’re never too old to learn new things’, Andrew completed a photography degree in his forties and takes his camera out on his many walks.

Above are two of his favourites.

SUMMER 2021 emphasis 15

Making the most of your

FREE !

remote appointments Plan for your telephone or video appointment with our bespoke preparation form, designed specifically for people with pulmonary hypertension

✓ Plan the questions you want to ask ✓ Pre-fill your EmPHasis-10 questionnaire Download the form at www.phauk.org No printer? No problem!

Call 01709 761450 or email office@phauk.org and we’ll happily post you a free copy

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NEW!

Experts ASK THE

The UK has an outstanding national network of PH specialists and our new regular feature makes the most of their expertise…

Carol Keen

Dr John Wort

Carol is a Clinical Specialist Physiotherapist in Pulmonary Hypertension, at the Pulmonary Vascular Diseases Unit, Royal Hallamshire Hospital

Nadine Turner

Nadine works as an Advanced Clinical Pharmacist, at the Scottish Pulmonary Vascular Unit

Dr Wort is Chair of the UK Pulmonary Hypertension Physicians Group and Clinical Lead for PH, at the Royal Brompton Hospital

MEET THIS ISSUE’S EXPERTS

Wendy Gin-Sing

Wendy is a Clinical Nurse Specialist in Pulmonary Hypertension, at the Hammersmith Hospital

Turn the page to read their advice about medication for hayfever, breathlessness when exercising, enjoying summer with a Hickman line, and how often you should expect to be seen by your team.

SUMMER 2021 emphasis 17

“I’m trying to lose weight and I know I should be doing more exercise, but I worry that it will make my breathlessness worse. How do I know how far to push myself?”

Exercise is really important in pulmonary hypertension – we know this through research and through the feedback we get from our patients too. Being fitter and stronger will make living with your PH easier. And exercise can help in other ways too, like improving your mental health. The best form of exercise to do is the one that you enjoy. So, if you like to walk then walk, if cycling is your thing then look into options for cycling. If you prefer to be indoors then it’ll be easiest to find something for you to do at home or at a gym – an exercise programme, a class or

“I have started to get hayfever in the summer, which can get quite bad when the pollen count is high.

Can I take antihistamines with PH medication?”

Hayfever is a troublesome problem that many people suffer from, particularly in the spring and summer months, when pollen count is high. It is caused by an allergic reaction to the pollen made by plants and can have a number of different symptoms such as itchy or runny eyes, sneezing or coughing, blocked or runny nose, headache, earache or feeling tired. There are a wide range of hayfever

SUMMER 2021 emphasis 18

maybe something like yoga. You won’t be able to exercise in the same way as you could before your PH, but there are many different ways to adapt activities to suit you. Start very small, then gradually build up your activities. In terms of how far to push yourself, it is important to get a little bit out of breath when you are exercising – that’s how you get fitter. So, if you are a little bit out of breath, but you can still chat, then that’s just the right level of exercise. If you are breathing heavier than that, or gasping or panting, then you are working too hard and need to slow down or stop.

You should also stop if you feel dizzy or experience chest pain. If you have concerns, then check with you PH centre before you start exercising – some centres have a physiotherapist who would be very happy to help.

Carol Keen

treatments available to buy over the counter – the main being antihistamines; primarily tablets such as chlorphenamine, loratidine or cetirizine. These antihistamine tablets do not interact with disease targeted treatments for PH, however it is always important to double check with your pharmacist as other medications you are on could interact.

Other treatments for hayfever offer a more localised effect for specific symptoms such as eye drops (sodium cromoglicate) which are useful for runny eyes, and steroid nasal sprays (beclomethasone, mometasone) which are useful for a blocked/ runny nose. These are also safe with PH treatments.

There is a class of drugs that can sometimes be used for hayfever called decongestants which should be avoided if you have PH. This is because they are vasoconstrictors and so if absorbed into the bloodstream they could work against your PH treatment. If you are unsure what is in the treatment you are buying, it’s always best to double check with your pharmacist.

Nadine Turner

“I have PAH and have an annual appointment with my specialist centre for a check-up. However, someone else I know with the condition sees her specialist four times a year - why is it so different?”

The first thing to say is that although there may be small differences in the way the centres work, on the whole we follow similar principles. The number of times we send check-ups generally depends on how stable you are and where you are in your journey with PH. For patients who are new to the diagnosis or to the service, we will need to see you more often, to make sure we have you on the right treatments and that any side effects of medications

“I’m hoping to get away on holiday this summer, even if it’s just in the UK. Can I enjoy the sea or the pool with a Hickman line? Ideally, I’d love to be able to swim” A break is just what we all need and there are some beautiful places to stay in the UK. We always advise that you don’t go swimming when you have Hickman line, due to the risk of infection as the sea is full of bugs and pools are not much better either. There is also the worry of your infusion pump malfunctioning from contact with water, as interruptions in prostanoid therapies can be lifethreatening. Having said that, there are people who, knowing the risks, decide that they really do want to get into the water

are controlled. This will generally be four times a year.

We may also need to see you more often if you are struggling to cope psychologically with your diagnosis.

If your condition gets worse for any reason, we will also need to see you more often until things stabilise again. However, when you are stable, we will need to see you less often and maybe only once a year. It is very rare to be seen less than once a year. Remember, if you are worried about your condition and don't have an appointment for a while, please let your service know and an earlier appointment will be made. We are always there for you!

Dr John Wort

- and steps can be taken to make this safer.

Bespoke dry suits from companies such as www.hammond-drysuits.co.uk have tight seals around the arms, legs and neck to keep your chest dry when swimming. If you are around water, you should ensure that your infusion pump is kept in a waterproof pouch with an outlet for tubing, like those available on www.aquapac.net.

The insertion site of the Hickman line should be well covered with a waterproof dressing such as Tagaderm or IV 3000 and the extension tubing well secured. Make sure you test out your dry suit and pouch in the bathroom at home before you go away so you are familiar with them and you know that they work. Even with all these measures in place, make sure you have your spare pump and supplies close by just in case and take the contact numbers for your PH team with you. I hope you have a great holiday.

Wendy Gin-Sing Got a question for next issue?

Send it to media@phauk.org and if your query is picked, we’ll find an expert to answer it in print.

SUMMER 2021 emphasis 19

“ We knew everything about each other.

Apart from this.”

Let’s give the people we love, the certainty they need.

Talk to your loved ones about organ donation.

Visit organdonation.nhs.uk

PHA UK

research

Living through the pandemic

with PH

Share your side of the story and make your voice part of history We’ve all navigated the COVID-19 storm in different boats, and as a society we need to understand the impact of the last 18 months so that lessons can be learned.

It’s essential that we capture the experiences of the pulmonary hypertension community during this unprecedented time, and we really need your help to do this.

Last year, three months into the pandemic, we conducted important research to help us understand your experiences of shielding.

We had 824 responses - the most we have ever received for a survey - and these responses gave us vital insight into the effects of the early stages of COVID-19.

A year later, and 18 months since the virus reached our shores, we need to understand the wider picture.

What’s it been like for you?

We want to understand the effect on your physical and mental health, how your habits and behaviours

might have changed, and your personal experiences of the restrictions to everyday life.

Was shielding the right thing to do? How do you feel about the future, and what support do you need as the world opens up again?

This time, we want to hear from everyone in the PH community - not only patients. If you are a carer, parent, guardian or loved one, it’s important that your voice is heard too.

That’s why you’ll find two different surveys with this magazine. One is for patients, with space for parents and guardians on the reverse, and the other is for someone else in the household perhaps a partner, or family member - to complete. You can return the surveys together, in the same envelope (postage is covered by us, so there’s no need for a stamp). You can remain anonymous if you wish.

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PLEASE ENSURE YOUR RESPONSES REACH US BY FRIDAY 31st JULY 2021

Shielded voices

Lived experiences duri ng the early stages of the COVID-19 pandemic

last ur report from o d n fi n ca u Yo k.org t www.phau a h rc a se re s year’ d by o be requeste A copy can als ce @ phauk.org emailing offi 09 761450 or calling 017

SUMMER 2021 emphasis 21

Just some of the wa you’ve beeys PHabulou n s the last fover ew months

g n i s i a r d n Fu

S U C O F

Super skydive for Jo

Six members of the same family leapt from a plane to raise almost £15,000 in memory of Joanne Whitcomb. The brave team of cousins - Robert Witcomb, Andrew Orgill, Mike Aston-Mead, Katie Witcomb, Georgia Hill and Dan Hynes - used the fundraiser to mark eight years since Jo received her PH diagnosis. She lost her life in December 2018.

The family’s sponsorship was kindly matched by Robert’s employers eComposite Products Limited, doubling the total. The skydive is just one of several fundraising challenges being planned by the Orgill family, with sponsored swims, the London Marathon and more in the pipeline. Robert, Jo’s husband, said: “Jo’s memory will live on through me and her boys, and if she had survived, I know she would have helped others with the same condition. This fundraising gives us the opportunity to do what she would have wanted.”

Pavement pounding for PH Friends Ian Todd, Josh Caddick and Ffion Jones sacrificed sleep and their weekends to run four miles every four hours for 48 hours in March.

The trio jogged through night and day, experiencing all kinds of weather, in support of Ian’s sister Lily, who has PH. They kicked off their run at 4am, finishing two days later with 48 miles under their belts and just snatches of sleep in-between.

£ 8I4SE2D RA

SUMMER 2021 2019 emphasis 22

6 £14,7S0 ED RAI

£ 5I7SE9D RA

Music, memories & money

A song recorded by Will Acres just before his death from PH was released by his family to mark his birthday – and downloads have generated hundreds of pounds for our charity. ‘Sing About You’ was recorded by the talented DJ and producer with his childhood friend Molly Peel, and was made available to download for a minimum donation of £2. Will managed to complete a music degree whilst undergoing treatment for PH and with his family celebrated his passion with the release of this special song.

You can still download ‘Sing About You’ at www.willacres.bandcamp.com

Strolling the pyramids of Giza

When new mum Rebecca McEwan set herself a walking challenge to keep fit during lockdown, she took the opportunity to raise money for our charity too. Rebecca, along with daughter Autumn, covered 46 miles in ten days around their home in South Yorkshire - the equivalent of walking through Cairo to the oldest of the Seven Wonders of the Ancient World. She signed up via an online challenge provider, allowing her to map her progress on a mobile app, where she could explore her virtual surroundings as she approached the pyramids. To sign up for your own virtual Giza challenge, or choose from

Chairman’s

Challenge

others including the Inca Trail and English Channel, visit www.theconqueror.events Thank you to Rebecca and Autumn for making every mile count!

Alex Charlesworth, 30, Kent Alex was diagnosed with PAH in 2019 Sarah Malia, 39, Northampton Sarah’s sister was diagnosed with PH a few years ago

Meet our Chairman’s Challenge heroes!

Earlier this year, we laid down the gauntlet for ten people to put their best foot forward for PH in our first ever ‘Chairman’s Challenge’.

After securing ten free places in the Virtual London Vitality 10,000, we invited applications from across the PH community to take on the challenge and raise money for our charity.

This army of supporters committed to running or walking 10km on a route of their choice, either all at once, or across a number of days.

The challenges were completed during the first week of June.

Jack Venables, 18, Kent Jack’s mum Jayne has PH Hannah Royle, 30, Manchester Hannah’s mum Julie has PH Lynsay Macdonald, 31, London Lynsay is a Research Nurse at Great Ormond Street Children’s Hospital and works as part of the pulmonary hypertension research team.

Sandra Ballantyne, 51, Falkirk Sandra’s father died with PH and her sister also lives with the condition

£1I7SE5D RA

John Harrington, 34, Sheffield. John is Ward Manager at the Royal Hallamshire Hospital’s Pulmonary Vascular Disease Unit Juliann Bower, 15, Fife Juliann has PH herself and lost her mum to the condition when she was 11 Nicola Cookson, 37, Derbyshire Nicola lost her sister due to PH earlier this year Alice Rose, 22, West Sussex Alice’s dad lives with PH

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SUMMER 2021 emphasis 23

Living life on the transplant list

At 30 years old, Vicki Lee is waiting for a heart and lung transplant due to her PH. She explains how she came to this point, how she deals with the uncertainty, and why it’s so important to ask for help if you need it.

I

was diagnosed with pulmonary hypertension in 2017. I had been feeling breathless for a few years beforehand, but doctors thought it was anxiety and I wasn’t very persistent with finding out, so I just accepted it was that.

Then during a trip to Vietnam, I started to suspect something was really wrong, so I came home early and went back to my GP. He told me he still thought it was anxiety, but did some blood tests and an echocardiogram (ECG) as a precaution.

I was frustrated that I had come home Waiting for her transfer flight to the specilaist centre in Sheffield

SUMMER 2021 emphasis 24

for what I thought was no reason, so I booked a trip to Wales to visit friends.

We had just bought a round of drinks at the pub when I looked at my phone and saw lots of missed calls and a text message telling me to ring the doctors immediately.

I was told the test results didn’t make sense, and there might be a big problem. I was ordered to go to my nearest hospital straight away, and as I was away from my hometown of Stoke-on-Trent, that meant going to Cardiff. Here, I was put on high oxygen and had lots of tests, before being told I had ‘a little bit of heart failure’.

I was admitted to the coronary care ward for more tests and my mum came to be with me, sleeping at my bedside for a week. I was diagnosed with pulmonary hypertension and a coronary sinus atrial septal defect (ASD) - which was quite a shock.

Not long afterwards, I was transferred by helicopter from Cardiff to Doncaster, and finished my journey to the Sheffield Pulmonary Vascular Disease Unit by ambulance. Here, I spent a week getting on the right medications and coming to terms with my new life.

My condition has deteriorated over the past few years and in 2019 I was put onto intravenous medications.

I was listed for a heart and double In flight to the specialist centre

lung transplant in September 2020, following an overnight assessment at Royal Papworth Hospital that involved many, many tests.

Because I need both heart and lungs, and because of my blood type, they said that I could be facing a two-year wait – hence being listed at this point.

Initially I felt relieved because I was terrified that there would be some reason why I couldn’t have a transplant, so I felt relieved that I was a suitable candidate.

But I had a week or so before going back in to meet the surgeon and sign the paperwork, and during this time, the reality of what was to come slowly started to settle in. It was a very emotional time because it’s such a huge thing to have to go through.

The day after I was added to the list, I got a call from a private number and my heart rate went through the roof. I even got the shakes.

I was highly anxious for the first few months after being listed and was in regular contact with a psychologist.

This was a huge help for me coming to terms with being on the list and the uncertainty that comes with knowing that at any point you can get that call.

One of the tools the psychologist taught me is ‘safe space meditation’, where you have a space in your mind that you can go to when you close your Ready for the walk test at her transplant assessment

Diagnostic tests in Cardiff

Vikki's mum slept by her bedside for a week while she was in hospital

Vicki's first time outside after having her Hickman line fitted eyes and imagine being there, loved and safe. The great thing about this is when you learn how to recall it yourself, you can do it anywhere - whether it’s before bed to help you sleep, or in a CT scanner.

It’s important to reach out and talk to people - friends, family, professionals - when you go through a huge life-changing event like this. It is so easy to get swept up and become overwhelmed and, in my experience, when my mind and mental health are fuzzy, my physical health will follow.

It’s very strange to know that your life could change at any moment and for the first month after being listed I was very aware of every time the phone rang.

My sessions with the psychologist have really helped me with accepting things that are out of my control.

I currently live at home with my mum, stepdad and sister Stacie, and they are all incredibly supportive and helpful. I would struggle a lot more without them. I think everyone is nervous, apprehensive, and probably a little bit excited about what the future could bring.

I have found an online community of people who have been through the transplant journey, which I find immensely helpful because it can be a very isolating experience.

This is also why I started my blog (www.survivingthriving.co.uk) as I have found many others about life after transplant (which is great!) but I wanted to share the ‘before’ part too. Maybe sharing my story will help others, as their

After having her Hickman line fitted

With friends in 2019 stories have helped me.

The blog has also given me a sense of purpose and it is quite therapeutic.

I have had lots of people who are also currently waiting for organs come to chat via my linked Instagram account, and it has been so lovely to connect with people who completely understand what I am going through.

I am nervous about the transplant (I think it would be strange not to be!) however I have no doubt that this is the best thing that could happen to me.

I know that this is going to be a very hard journey, as living with PH already is, but I also know it is going to be worth it.

Organ donation is so important because it saves lives and gives people a

second chance when their first one has been stolen from them by illness.

I am a registered organ donor and have been long before I knew that I would be in the position I am in today.

Each person who becomes a donor can save up to nine lives - and that is one hell of a legacy.

SUMMER 2021 emphasis 25

Movement for a positive mind

Qigong is gentle enough to be practiced by anyone and the benefits for those with long-term illnesses are plentiful. Are you ready to be inspired?

P

ronounced ‘chee-gung’, qigong is defined as a system of co-ordinated body posture and movements, breathing and meditation. Similar to tai chi, it typically involves moving meditation, coordinating soft-flowing movement, deep rhythmic breathing, and a calm, meditative state of mind.

The gentle movements can be completed standing up or sitting down, and benefits include strengthening and balancing the body, as well as calming the mind.

Judith Reardon, 86, lives in Chester and has pulmonary hypertension and scleroderma. She began practicing qigong at home last year after losing her husband and struggling with a poor prognosis.

She said: “Even though I knew I wasn’t doing very well, I’ve always been very energetic and positive and I always expect to get over things. So, to be told

that maybe my time was quite limited was a big shock and I got quite low for a while.

My natural state of mind is to be positive. I knew I had a life-limiting condition, but I wanted to do something for myself, and feel better about myself, especially whilst shielding.”

Judith had attended some local tai chi classes before the pandemic, and after giving overly-energetic Joe Wicks workouts a go, she set out to find something gentler to take part in at home.

Searching on YouTube, she happened across 20-minute guided qigong sessions for seniors, and the practice soon became part of her daily routine.

“I really liked it, from the very start”, she said. “I would describe it as mindfulness with movement. The presenters describe it as ‘effortless power’ and it’s all about relaxation, with deep breathing to promote energy. I have seen physical, mental and emotional benefits from it. I personally like the emphasis on

us all being part of each other, nature and the universe – some people may find that a bit ‘airy fairy’ but I like it. It resonates with me, as it makes me feel like no life is ever purposeless.”

Judith practices qigong in her living room, following the movements on her TV screen via YouTube. One of the big benefits she said, is that you need very little space and no special equipment.

“You can do a lot of the movements sitting down and I do it in my slippers.

You don’t need any lycra; all you need is an open mind.

My joints feel more mobile now and it’s really helped with my balance too.

That 20 minutes I do every day is 20 minutes of calm, and it’s my little happy place. It also helps to give me a routine and a focus.”

Judith credits qigong for giving her back her confidence after the death of her husband, her worries over her health, and the isolation of lockdown and shielding.

“You don’t need any lycra; all you need is an open mind.”

SUMMER 2021 emphasis 26

“I was really frightened of going out, but I can now enjoy getting in the car, pootling about the shops, visiting friends again, and life opening up”, she said. “I’m not anxious anymore, and because I’m more confident, I’ve made a new circle of friends amongst my neighbours. I’ve got all these lovely supportive people egging me on in life and I feel so fortunate.

Having a bit of a social life again is helping me feel so much more positive.”

Embracing online technology has allowed Judith to enjoy guided qigong sessions from her own home, but as society continues to open up, it may also be possible to find in-person group classes at your local gym, church hall or community centre.

And having seen such huge benefits from qigong herself, Judith is keen to let others with PH know how helpful the practice can be. She added: “I’m 86, so if it suits me, I think it will suit other people – especially those who don’t feel too confident. I know it won’t be for everyone, but you won’t know until you try."

“My joints feel more mobile now and it’s really helped with my balance too.”

The free guided qigong sessions followed by Judith last for 20 minutes are designed for seniors. Type bit.ly/33uesaE into a web browser to find them. The main presenter, Lee Holden, also leads free sessions for other ages and abilities.

Qigong has its roots in Chinese medicine, philosophy and martial arts. Qi translates as ‘life energy’ and the practice is thought to harmonise, strengthen and have a healing effect on the functioning of all the internal organs and bodily systems.

SUMMER 2021 emphasis 27

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NEW AREAS !

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SUMMER 2021 emphasis 30

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GREEN LEAF CREW Q &A

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st thing ’s the be Q. What ummer? about s ay ! Also, Mum h her Essex wit has PH, le irthd in s e v li .

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Emma lives in St. Alban’s with her brother Charlie (11), who has PH, and sister Olivia (7).

They share their house with their mum, dad and pet fish.

Q. Where is your favourite place to go on holiday?

A. We went to Lapland last year and I really enjoyed it.

Q. What is your favourite type of animal?

A. Tiger.

Q. What’s the best flavour of crisps?

A. Ready salted.

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

A. Football.

Q. What is the last book that you read?

A. The Land of Roar

by Jenny McLachlan.

SUMMER 2021 emphasis 32

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Connie Annabelle

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A. Charlie is fun and Olivia is very good at dancing so we can dance together.

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SPECIAL FEATUREIU:M ICU DELIR

UNDERSTANDING

ICU DELIRIUM Intensive Care Unit (ICU) delirium - also known as acute confusional state - is an extreme form of anxiety that occurs when someone is in critical care.

It can take the form of hallucinations or delusions, and leave someone feeling confused and frightened, or unable to think or speak clearly. The experiences leave some struggling with anxiety or depression long after being discharged. Delirium affects up to 80% of patients in intensive care, but lack of understanding, fear of judgement or even shame can stop people seeking help. Prevention, recognition and education is vital – and so is speaking up if you are struggling with your own experiences.

Together, we need to challenge the stigma.

Turn the page to learn more from an ICU delirium expert and hear from pulmonary hypertension patients who have experienced it. >>>>>> SUMMER 2021 emphasis 33

SPECIAL : FEATURE M ICU DELIRIU

Katarzyna (Kate) Zamoscik is a Senior Staff Nurse in Critical Care at Royal Papworth Hospital, the only hospital in the UK that performs pulmonary endarterectomy surgery for people with chronic thromboembolic pulmonary hypertension (CTEPH). She is also an ICU delirium ‘champion’, with many years behind her of caring for people with these experiences.

Every year, 170,000 patients are admitted to intensive care in the UK and a large number of these patients are likely to experience ICU delirium.

This also means that there are a lot of relatives affected by it too.

ICU delirium is very common and it’s really important that we encourage understanding of it. We don’t want patients leaving intensive care feeling traumatised or feeling unable to return to normal life because of psychological distress.

Defining ICU delirium

Patients may not remember why they are in hospital, and they may be hyper-alert and very observant of what is happening around them (so they will become ‘over-stimulated’) or they can be the opposite – too drowsy to be aware of what’s going on around them.

They can be easily distracted, so will have difficulty taking in information or understanding what is being said. They may be forgetful and feel disorientated.

They may have difficulty making judgements, have incoherent speech (rambling), or be unable to recognise spaces or shapes.

Some patients may hallucinate or have delusions. The deterioration of mental faculties might affect their understanding of their surroundings and situation, which can make it very frightening for them.

Some patients are very hyperactive – agitated and restless – with severe anxiety or mood swings. They can be very fearful and think that something

SUMMER 2021 emphasis 34

bad is happening to them. This type of hyperactive delirium is actually quite dangerous, because patients might pull the tubes out and put themselves at risk of harm.

The opposite type of behaviour, which is much more common in delirium, is known as ‘hypoactive’ delirium. Patients are lethargic, very quiet and unusually sleepy.

The most common presentation in critical care is when patients move between the two states – from agitated, hyperactive behaviour to becoming sleepy and unresponsive.

Delirium often comes and goes and fluctuates throughout the day.

Most cases of delirium resolve within days, but some do persist for weeks or months. It does depend on the individual and the disease burden.

hospital for a long time.

It could be a side effect of taking certain drugs, or immobility, constipation, dehydration, or sleep deprivation – or simply the experience of being in hospital. Usually, patients have multiple drivers for their delirium rather than just one thing. There can be so many reasons.

Risk factors for ICU delirium There are certain risk factors for delirium. It can be a consequence of low oxygen level, of infections, kidney or liver disease, or even a sign of withdrawing from substances – for example if someone is used to smoking, but has been in

Kate Zamoscik Senior Staff Nurse

From research, we know that certain groups of patients are more likely to get delirium than others – including those of advanced age (over 65), and those with dementia, depression, anxiety, or other mental health challenges.

Those with poor vision or poor hearing are also more likely to misinterpret their environment.

The impact and consequences of ICU delirium

The short-term consequences are that patients with delirium are more likely to spend longer on a breathing machine. They are more likely to get chest infections, bed sores, or clots – and as a result of that, they spend more time in the ICU. Some patients make a quick and full recovery from delirium. Others go on to suffer from anxiety and / or depression and in rare cases, they might develop post-traumatic stress disorder (PTSD).

This is because some patients have very vivid recollections and flashbacks, and this can affect their ability to return to ‘normal life’ – to function within the family and in society.

Delirium can affect not only the patient, but the family too. And the psychological impact of delirium can slow down the physical recovery from whatever the patient is in hospital for.

There is also some evidence that some patients may go on to develop what’s known as ‘dementia-like cognitive impairment’ – where

they have trouble with thinking, concentration or memory. But seeking help early can minimise the risk of this.

Encouraging conversations

Not all patients flag up the delirium they have experienced to their care team. Some can’t even remember it taking place. Others don’t bring it up because they are embarrassed or scared to say they have these horrible nightmares or hallucinations.

They might feel ashamed of their irrational behaviour, and sometimes of how they behaved towards staff during that time. But as medical staff we are very used to patients with delirium, so we are very understanding and make no judgement.

Sometimes patients stay quiet because they think that talking about it will bring back distressing memories, so they try to deal with it by themselves.

ICU delirium is very common, but that doesn’t mean it’s normal, and we need to talk about it more.

It’s important for patients to know that this kind of delirium is a wellknown complication from critical care illness so if they talk to their specialist PH nurse about it, or go to their GP, they will understand. Don’t pretend it doesn’t exist; it’s really important to talk about it.

There is a lot of support available and the most important thing for patients to know is that they are not alone. ICU delirium is yet another

health problem they are battling, and it is nothing to be ashamed of.

We need to keep talking about it and keep on educating about it. It’s a difficult subject, but it’s an important one for everyone.

Accessing help

If you are struggling with your experiences of delirium whilst in intensive care, support is available.

Speak to your specialist team about being referred to clinical psychology if you need to be supported through your experience, and if that is not enough, a psychiatrist may be brought in to help.

Help is available outside of the hospital environment too. Talk to your GP about accessing local psychological support services, or other ways of managing anxiety or depression as a result of your experiences.

ICUsteps is an intensive care patient support charity, working nationally to support patients, relatives and healthcare professionals too. They run face-to-face support groups around the country and have an online community where you can talk directly to others affected by ICU delirium. Visit www.icusteps.org for more information.

ium is ICU delir referred es sometim , psychosis to as ICU . ndrome or ICU sy

Kate is a ‘delirium champion’ at Royal Papworth Hospital, one of 13 nursing staff members who have taken on the additional role to educate and raise awareness of ICU delirium amongst staff, patients and their families.

Continued >>> SUMMER 2021 emphasis 35

SPECIAL : FEATURE M ICU DELIRIU

SPEAKING UP...

These PHA UK members have all had different experiences of ICU delirium and are united in their belief that it needs to be talked about more.

Amanda Finlayson is 49 and lives in West Lothian, Scotland. She experienced ICU delirium when she had her pulmonary endarterectomy operation in December last year.

SUMMER 2021 emphasis 36

I developed a chest infection following my operation and stayed in an induced coma, so I was there for 17 days in total.

I experienced (in my mind) extended lucid periods when the staff were trying to kill me. Eventually when I was fully conscious, I recognised some of the staff from those periods which made it even more real and frightening. I finally opened up to a lovely nurse who gently explained that what I had experienced wasn't real and helped me to realise that I had gone through a psychotic episode. She is a wonderful nurse and I feel like she saved me, as I was so convinced it had all been real.

A psychologist spoke to me while I was still in hospital.

We had a really good chat and he said that the flashbacks should fade in time.

But since then, if I smell hand sanitiser or mouthwash, I have flashbacks. Also, when I look at my scars it brings it all back. Sometimes, out of the blue, I find myself crying.

It's always there at the back of my mind.

Although I'm aware I went through a psychotic period, I still went through a traumatic experience that was real to me at the time. A member of the psychology team at the hospital phoned me at home and agreed that I would benefit from therapy for post-traumatic stress disorder (PTSD). I have been referred for this treatment and I'm waiting for my first appointment.

When I brought up my experiences on a Facebook group, several people noted that they too had gone through similar experiences. They thought it had only happened to them, and that it wasn't something that was discussed very much, if at all, afterwards. It was a huge relief to know it has happened to others, and to hear their experiences.

Paula Massie from Aberdeen experienced hallucinations and developed irrational fears whilst in intensive care following her double lung transplant in 2019.

I remember when I first woke up that I was terrified.

I didn't know where I was, I thought the nurses were trying to hurt me, and I didn't believe people when they said I had had a transplant.

I had vivid hallucinations - some were like cartoons, and others were more realistic. They involved battles, the ICU being moved to a barn, and politicians that were thunderbird puppets. I also thought I could hear nurses saying things that weren’t true, including that I had taken a child’s lungs and I was selfish.

I had no filter and would say horrible things and do things that were out of character. I had no concept of time or what day it was, and it felt like a total loss of control. I didn't sleep much for the six weeks that I was in ICU. I also had a tracheostomy and I felt that caused me further distress as it was so scary being unable to talk and tell people how I felt. I’ve always felt very strong in the way I’ve dealt with my PH, but these experiences made me feel very vulnerable.

I developed a fear of sitting in the chair next to my bed.

I got to the point where I would have a panic attack whenever I sat in it and I just wanted to lay on the bed. It took a long time to get over it and even now I have a bit of a panic about sitting on a hospital chair.

The hospital had a psychologist who came to talk to me, and she helped me to extend the time I could sit in the chair and gave me some techniques which helped me understand what was going on.

I remember I was fine sitting as long as I was also moving, so my poor husband had to push me all around the hospital in a wheelchair just to get me to sit up for a while.

I was extremely lucky to have a good support network around me and people who would help me as much as they could. I have learned a lot of different techniques to reduce my anxiety, such as breathing exercises, and I've educated myself more on mental health issues.

I haven't spoken much about my experiences because I feel that not many people would understand. Hallucinations only seem to be discussed in a jokey manner. Perhaps some people can look back and see the funny side but to be in that moment is actually terrifying.

I think that it's important to talk about all of this more and to realise that these things are a normal reaction to everything going on when you are in ICU.

Paula recovering from her transplant

Ian Briggs lives in Leeds and spent time in intensive care when he was diagnosed with PH. He has received treatment for Post-Traumatic Stress Disorder (PTSD) following his experiences of ICU delirium.

When I was in ICU I had an element of what is called hospital psychosis or delirium. I was in the middle of traumatic stress at this time due to my symptoms and the things happening to my body. I was petrified to go to sleep as I thought I was going to die.

I experienced horrendous hallucinations causing further anxiety. Part of the hospital psychosis makes you believe that the people looking after you are trying to kill you. I suffered massive paranoia as it is difficult to know what is real and what is not.

Back home, invasive thoughts caused me lots of problems.

These took the form of flashbacks to the most traumatic events that occurred during my ICU stay. I was transported right back to the trauma and I had massive anxiety about going to sleep. The niggles would start whilst brushing my teeth before bed and then as soon as I lay down, I would start to worry that I was going to struggle to breathe as thoughts of dying would flood in. I’ve received something called...

Continued >>> SUMMER 2021 emphasis 37

Eye Movement Desensitisation and Reprocessing (EMDR) therapy to help. I’ve had 71 sessions over the last couple of years and it has made a difference. Although PTSD is still difficult to live with, recognising the signs and symptoms does help a little in controlling it to some degree.

I’m not ‘cured’, but I am desensitised to the traumas from ICU. However, there are still other traumas, that are there in the background, and that can still cause flashbacks.

I’m finding that practicing mindfulness helps me go to sleep. I use the tool of focusing on my breathing, counting the breaths in and out. It allows me to calm down and stops the thoughts taking over.

SPECIAL : FEATURE M ICU DELIRIU

EMDR therapy is a comprehensive psychotherapy that helps you process and recover from past experiences that are affecting your mental health and wellbeing. In most cases, it involves using side-to-side eye movements, combined with talking therapy, in a specific structured format.

Georgia Douch is 28 and lives in Essex.

She experienced vivid hallucinations whilst recovering from surgery for chronic thromboembolic pulmonary hypertension (CTEPH).

The operation was successful, and I am now back to the things I used to do, but I was in hospital for a total of three weeks. Before I was fully woken up, I had very vivid dreams.

I could hear sounds perfectly and see images as clear as day.

My first memory was that I had died and was being taken ashore on a boat where I was to be left to take my final breaths. I could feel the water around me as I was dragged from the boat. This was obviously a dream that I now believe

SUMMER 2021 emphasis 38

was me being rolled and washed by the nurses.

The next dream I had whilst being woken up was that my family were with me in a glass box in the middle of a huge open field with huge buildings all around. I was in the box because I had COVID-19 (I didn’t). I remember a lady standing over me with my mum and she pulled my chest drains out.

I remember my mum being overjoyed and hugging the nurse.

Of course, again this was all in my head.

I then had another very vivid dream of my mum and dad by my bed being told I was not going to recover, and they could do no more for me. I remember seeing my mum pass out in front of me and I just willed my brain to work and breathe and breathe.

I didn't sleep well the whole time I was in hospital. The room to my left had a patient in there but I always saw different things. I had a vivid picture one day that the room was a window, and I could see a very old man waiting for a bus in the pouring rain. A lady came over to tell him there were no buses. I remember telling my nurse about the man and that he needed help, but of course he was not real.

Whilst in ICU my kidneys failed slightly so I was put on dialysis. I was petrified of the machine as I believed it was a man trying to kill me in my sleep. That was very frightening.

I remember believing one nurse was going to hit me and tie me down or attack me and I screamed when she came back to do the night shift. That was awful. The experiences with the hallucinations haven’t caused me any ongoing problems; my family and I now actually laugh about it and some of the things I said and thought I saw. I don’t think I was an easy patient, but I also don't think that's surprising after all I had been through.

It was a very traumatic and emotional year following my diagnosis of CTEPH, which included having to terminate my pregnancy, which left me heartbroken. I am undergoing counselling, which has included talking about my time in ICU. Although my experiences there haven’t affected me dayto-day since, it is nice to talk about them and know I’m not alone with them.

We would like to thank Amanda, Paula, Georgia and Ian for sharing these experiences. If you need help for anything you have experienced whilst in ICU, please speak to your medical team.

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Reducing breathlessness

with a handheld

Research has sho wn that a cool dra ught of air from a handheld fan ca n be very helpfu l in reducing the feeling of bre athlessness. Here ’s our guide to making the most of them.

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*Contributions of a hand-held fan to self-management of chronic breathlessness. Tim Luckett, Jane Phillips, Miriam J. Johnson, Morag Farquhar, Flavia Swan, Teresa Assen, Priyanka Bhattarai and Sara Booth

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SUMMER 2021 emphasis 41

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On his first date with Gill Stewart, Andrew Krelle told her he had pulmonary hypertension.

Far from putting her off, the pair enjoyed over 11 years of happiness together – leaving Gill with precious memories that have helped her through the grief of losing him.

SUMMER 2021 emphasis 42

I

met Andrew on a dating site back in 2009 and our first date was at a country pub. I liked him straight away; he was funny, kind, and I felt safe with him.

That first time we met, he told me he had pulmonary hypertension and like so many people I’ve come across since, I had no idea what it was.

He told me he had congenital heart disease and had been diagnosed with PH for four years. He explained he was in and out of hospital quite a lot, but it didn’t bother me at all. I saw the person, not the illness. We met up a couple of days later and it just went from there.

Some of the gifts given to Gill by her family, to help her with her memories of Andrew We realised we lived around the corner from each other, and in those early days Andrew would pick me up at 6am every day to take me to work. He was definitely trying to impress me!

Andrew loved pottering about his garden and sitting on his bench chatting to the neighbours. He was a very happy, chatty man who got on with everyone and he made lots of friends during his hospital stays.

He loved cooking and he would always cook me something nice when I got in from work. We didn’t move in together because it would have affected Andrew’s benefits, but we would see each other every day.

Andrew’s illness did stop us doing some things, but we made the most of the time that we had, and we took every day as it came.

Andrew couldn’t walk far without getting breathless, so we didn’t go out much, but we were happy living our lives the way we were.

We’d potter in the garden together, go to garden centres, and have days out to places like the Lake District.

We couldn’t go abroad but we had holidays in this country which we really enjoyed.

We also went out for meals a lot because Andrew could drive there and back. He loved his car, and it was always immaculate.

I used to clean it for him as he found it too difficult, and I did lots of other things for him too, but not because I had to. I did them because I wanted to.

I think he felt guilty that he had this illness, and I was healthy, and he thought he was stopping me from doing things.

Sometimes things weren’t easy of course, but it was where I wanted to be. And I didn’t ever class myself as his carer. I was his partner, and he was mine.

Towards the end of last year, Andrew’s illness had progressed to a point where nothing more could be done for him.

He died at home, which is what he wanted.

We had support from district nurses and our local hospice, who came in to visit each day, but I did a lot of the care myself too - because I wanted to and because of the love I felt for him. Andrew passed away peacefully, with me holding his hand."

Navigating my grief

"I feel I’m in a better place than I was, but my life feels empty without Andrew.

My family are all really close by, and I live with my parents, so I’ve got a good support network which makes a difference.

My employer arranged counselling for me which has helped me a great deal. My counsellor suggested I make a scrapbook of all the pictures I have from our time together. It took me a few months to be able to do it, because looking at them was so upsetting at first, but I have found it helpful. I started right from when we first met and as well as photos, I’ve made notes about where we were and what we were doing that day, so it’s like a story of our life together.

My family gave me some gifts at Christmas – including a memory box, a calendar with our photos, and a journal of loss and remembrance, and I have found great comfort from them.

When I first opened the journal, I found it very sad, but now I write all sorts in there. I’ve written about the last conversation we had, and about different scenarios. Whatever I’m feeling, I can put it down on paper and go back and read it if I want to.

I go to the cemetery twice a week and talk to Andrew. I kiss the picture on his headstone and tell him what I’ve been up to. And I have a photo of him by my bed, which I always say good morning and good night to.

Simply talking about him helps, and I know he’d be pleased to see this in Emphasis. Andrew used to call me his little diamond and tell me he’d be lost without me. But now it’s me, lost without him. I’m just so glad we had 11-and-a-half years together and made each other so happy.

SUMMER 2021 emphasis 43

Hope for the

Hybrid Heart SUMMER 2021 emphasis 44

A research team in the Netherlands aims to create a soft robotic heart that could improve quality of life for people with PH - and save lives from heart failure.

T

he project is led by Dr Jolanda Kluin, a cardiothoracic surgeon based in Amsterdam, and the team are hoping the innovation will provide a much-needed solution for heart failure.

The ‘Hybrid Heart’ will consist of a soft robotic shell, artificial muscles and sensors to enable natural motion.

Tissue-engineered lining will make sure all surfaces in contact with blood are safe and energy transfer (electricity) will be transferred wirelessly from a close power source worn in the patient’s clothing.

Dr Kluin had already carried out extensive work around tissue engineering, researching whether cells from the patient could be used to create artificial heart valves. And the inspiration for the Hybrid Heart came from, of all things, a newspaper article about a soft robotic octopus.

After finding out more and making contact with its creator, Dr Kluin saw potential that, with some adjustments, the same engineering could be used to create a heart.

She said: “We don’t know exactly what it will look like, but the most important thing is that the pumping power comes from the soft robot technology. By using soft materials, we hope that patients will

Dr Yolanda Kluin

take no or only light blood thinners.

This is completely new, but I am convinced that the implantation will work.”

Heart transplant remains the best treatment for people with heart failure, but there is a shortage of donor hearts especially for children. And PH patients require new lungs at the same time because in an average donor heart, the right ventricle is too weak to pump against the pressures caused by PH. Unlike a human heart, the right side of the Hybrid Heart could be tailored to deal with these pressures, negating the need for a simultaneous lung transplant.

As well as saving lives, it is hoped the Hybrid Heart will improve quality of life too.

Currently, some people with heart failure are treated with a Left Ventricular Assist Device (LVAD), which is like an artificial heart pump.

This can cause complications such as bleeding and embolism and requires constant connection to an electrical wire. The Hybrid Heart, on the other hand, uses a wireless connection with the power source hidden in a patient’s clothing.

“The LVAD has saved many lives, but the quality of life is still relatively low”, said Dr Kluin. “You can’t just take a shower, for example. We are hoping that with the Hybrid Heart, patients will be able to do without the power source for a while, so they can have a shower, or go for a swim.

“In people with PH, the Hybrid Heart will help more blood flow through the lungs because of the stronger right ventricle.

So, although it won’t stop the disease, it will certainly improve quality of life.”

The Hybrid Heart has been shortlisted with three others for up to £30m of funding from the British

Heart Foundation, as part of the charity’s Big Beat Challenge – a global competition for scientists to compete for research awards.

The winner will be announced later this year and if the project is successful, Dr Kluin believes the first soft robotic heart could be implanted in a patient by 2029.

.

Your thoughts on the Hybrid Heart To help them with their Big Beat Challenge funding bid, the team behind the Hybrid Heart enlisted the help of the PHA UK to find out what the British pulmonary hypertension community think of the innovation.

A survey conducted in May attracted 199 responses and showed 100% of people think its potential development is important or very important.

99% said they were interested or very interested in the project.

Comments included: “This sounds like the most important development in terms of benefit to PH sufferers that I’ve heard of to date.”

“The future has always talked about artificial hearts being a real thing.

This could make the fiction become reality. If you never push forward, you will only fall back.”

“As a PH patient who also has uncorrected congenital heart defects, this sounds as if it could be life changing.”

“It’s so scary to think that my heart could fail. I’d take this hybrid heart tomorrow if I could.”

You can find the full results of the survey at www.phauk.org

Find out more about the Hybrid Heart at www.hybridheart.eu and look out for an update in the next issue of Emphasis.

Find out more about the Big Beat Challenge at www.bhf.org.uk/bigbeatchallenge SUMMER 2021 emphasis 45

y a w my

My marathon Despite 24/7 oxygen and two serious diseases, PHA UK member Juliet Coffer is determined to live each day to the full.

After discovering the benefits of moving more at home, Juliet decided to revisit her dream of taking on a marathon by completing her own version instead - covering 3km across the 30 days of April, all without leaving her living room.

Juliet spoke to us halfway through her challenge; reflecting on her motivations, her achievements, and why she refuses to ever give up.

SUMMER 2021 emphasis 46

My pulmonary hypertension is a result of sarcoidosis – which occurs when inflammatory cells clump together to form ‘granulomas’. In my case they are around my lungs, which led to the PH diagnosis about ten years ago.

Both diseases are progressive and I’m continually deteriorating, but I want to continue to live life, not wait to die. There’s a big difference.

I’m on oxygen therapy 24 hours a day and am housebound; partly because being tied to the machine makes it hard to go out (a few hours requires six or seven canisters) and partly because I’m still shielding due to the pandemic.

It’s been a long time now. I actually decided in October 2019 that I wouldn’t go out for the winter, because I’d had such bad chest infections the year before. And then the COVID-19 lockdown began.

I work as an IT coach and website manager, and both jobs are easy to do from home, so aside from a couple of medical appointments, I haven’t been out for 18 months.

Moving more

During a recent consultation with my PH team, we discussed the possibility that some of my problems were down to my muscles being so weak due to not moving much, so I was referred to the physiotherapist, Katie, attached to my specialist centre.

I spoke to Katie on the phone, and that’s how my big walking challenge began.

At this point, I was barely moving as being on the oxygen and having limited lung capacity makes things very difficult. Simply bending over takes the oxygen out of my lungs. Everything I do has to be planned and the process of having a shower takes me two hours from start to finish.

It can take me a couple of hours of sitting on the bed when I wake before my body has the strength to move. And if I make a meal, I have a controlled plan that enables me to move methodically along the kitchen without having to go back and forth.

I spend most of the day sitting at the computer, and do a few hours of work before a nap, and then a few more. So, we were pretty much starting from nothing.

“I was surprised at how much I could do, once I started” Katie suggested to start slowly and work within my limits. She sent me through a document about breathing and the breathlessness scale so I could keep a check on that, and suggested I do small amounts a few times a day – things like standing up out of a chair and sitting back down again or walking on the spot to get my ankles moving.

It was a case of building things up slowly and I was surprised at how much I could do, once I started.

Taking it to the next level

Shortly after my chat with Katie, I found out that April was Sarcoidosis Awareness Month, and supporters were being encouraged to take on a ‘warrior walk’ – covering 100 miles in a month.

It sparked something in me, and I started to think how I might be able to take on my own challenge. I decided to scale it right back to suit my limitations and chose to do 3000 metres (3km) over the 30 days of April instead. It was absolutely Katie’s intervention that gave me the confidence to decide to do this.

I have wanted to run a marathon since the 80’s, and used to get up early every year on a Sunday morning in April to watch the wonderful, enthusiastic runners in the London Marathon.

Getting diagnosed with sarcoidosis and then PH put paid to my marathon dream, but after I started doing some exercise at home, I decided that dreams still can come true.

To most people, 3km in a month probably doesn’t seem very far, even verging on the ridiculous – but not for me.

To help me decide on the distance, I did some trials. I walked 100 metres on one day, and doubled it to 200 the next. I got over-excited and tried 300 the following day but it made me really ill, and I was ordered by the doctor to go to bed and rest for a few days.

It was too much, too soon, so we decided 100 metres a day would be manageable.

My oxygen machine lives in the lounge, which is five metres in length, so I’ve been walking from one end to the other and counting the laps. I have rests in-between and keep an eye on my oxygen levels and pulse; I don’t worry about how long it takes me.

Enjoying the benefits and looking to the future

Moving more has made me feel much more positive. Not leaving the house means it’s easy for me not to push myself and I could have carried on like that forever. But I feel so much better for actually doing something.

I have a stance that I wake up and every day is a new day to get on with.

I don’t want to be someone who sits in a chair staring at a TV forever. I don’t want to become that person.

Physically, the walking has helped me feel more movement in my limbs and without tempting fate, my lungs and breathing feel better. Plus, I’m hungry

for the first time in a year which is great.

Because I’m moving, everything seems to work a bit better. If nothing else, doing a little bit of exercise each day just makes everything feel a bit more positive.

I’m well aware that you need to help yourself to keep going and for me, the exercise is part of that.

“Because I’m moving, everything seems to work a bit better” I will continue to walk after the challenge, and to keep motivated I plan to log each lap I complete. I like to use old-fashioned gate charts on a piece of paper.

I will also set an alarm so that I get up from my computer every hour, and set myself targets each day. It’s important to have a plan of what you are going to do.

My motivation for the walking challenge was to raise money and to help people, and I want to continue that help in whatever way I can. For example, I’ve joined the patient group for our local GP surgery because I want to make things better for those using it with long-term chronic conditions.

You’ve got to have a purpose for living.

I was told my conditions can’t be treated anymore, but I don’t want to be a victim.

My life is different from everybody else’s but I make the most of it. I don’t see myself as brave, courageous and inspiring, I just see myself as living life in my own way. And if I can leave the world in a better place, then I have achieved something good.

We’re delighted to report that Juliet completed her challenge and at the time of going to print, she has raised £15,765 for Sarcoidosis UK, including match funding from the British Lung Foundation. You can visit her Just Giving page at justgiving.com/ fundraising/julietcoffer

SUMMER 2021 emphasis 47

theinterview

“The past year has been an exceptionally challenging time for our patients and their families” CLINICAL NURSE SPECIALIST STUART CRAIG in conversation with

Mary Ferguson

SUMMER 2021 emphasis 48

Stuart Craig’s career has taken him from a business degree in Scotland to a key role in the Royal Brompton Hospital’s pulmonary hypertension service.

He chats about his path to PH, the challenges of the pandemic, and those who inspire him every day.

Q. Did you always know you wanted to work in healthcare?

A: My career in healthcare fell into place through circumstance and opportunity rather than planning. In my final year at school, I had the chance to undertake voluntary work at a home in Glasgow for children with additional support needs. I had a great time there and thoroughly enjoyed the work. After school I started my business degree but realised I was off in the wrong direction - and so returned to healthcare working as a healthcare assistant (HCA) in a unit for adults living with dementia. That was almost 30 years ago now, so I feel I made the right choice!

Q. How did your career lead you to the field of pulmonary hypertension?

A: Having worked as an HCA I realised that I wanted to continue in nursing, so I started my nurse training. I came to London to train as my partner is a Londoner and we’d

both had quite enough travelling backwards and forwards between Glasgow and London - so one of us had to move.

Once I’d completed my training, I worked over the following years firstly at the Royal Free Hospital in a surgical ward, before moving to intensive care at Barts and then to the coronary care unit at St Thomas’. I finally came to the Royal Brompton as the Practice Educator for Cardiology about 12 years ago, covering the PH and congenital patient groups as well as other fields of cardiology.

Q. And how did you come to be a Clinical Nurse Specialist (CNS) within the service?

A: In my role as Practice Educator, I spent a significant amount of time supporting the nursing staff managing the PH patient group at the Brompton, as well as working with the PH team. As time progressed, I sought out the opportunity to have a more direct role working in PH and the opportunity came up for the CNS post.

>>>

SUMMER 2021 emphasis 49

“The time spent with patients is the best part of the role” Q. Is there such thing as a ‘typical’ working day for you and the PH team?

A: Our working pattern has changed due to the pandemic as we needed to consider how we could remain engaged with patients and deliver the service that is needed, alongside ensuring we keep patients as safe as possible. Our structure has changed significantly with remote clinics, and a newly established day unit - as well as longer term in-patient services. My day will vary depending on the division of work within the team; covering either wards, the day unit or supporting patients remotely through phone and email.

The past year has been an exceptionally challenging time for our patients and their families, and we need to support them while delivering the service needed.

Q. What do you enjoy most about your job?

A: My colleagues are an inspiring bunch and are great people to work with; in many ways they make coming to work a pleasure. And I like that I can still learn more and develop in my role within a field that is itself growing and developing.

But the time spent with our patients is the best part of the role. As access into the hospital has increased again over the recent months, I’ve realised how much I missed seeing people face to face. The occasions that I remember most, or moments that I’m most proud of, are often quiet conversations or moments with patients, families or colleagues when you recognise that you’ve managed to make a difference to them. That makes it all seem rather worthwhile.

Q. What are the biggest changes you’ve seen during your time working in the field of PH?

A: During my time at the Brompton, I’ve seen huge changes in the field of PH. The therapies that we have available to us have increased significantly, as well as our understanding of how to use them most effectively. We’ve also recognised the value of exercise in PH and work is ongoing to integrate that into patient care. The therapies for PH will continue to grow and there are exciting developments in the research field of different treatment pathways which we will see in the coming years.

Q. Talking of the future, where would you like to see yourself in ten years’ time?

A: It’s hard to imagine doing anything else! Hopefully, I’ll still be working in my role and certainly working in PH. The ways in which we work have taken a significant shift as a consequence of the pandemic and we need to

SUMMER 2021 emphasis 50

retain and develop the positive parts of that, alongside developing our service to meet the changing needs of the PH group. Organisational change will undoubtedly come in the next ten years, and so we need to make the most of the opportunities that will bring.

Q. Back to the present (and recent past), what has it been like working in healthcare through the COVID-19 pandemic?

A: Working in healthcare through the pandemic has been extremely challenging for a number of reasons. Early on, we were redeployed within the Trust and took on roles required to look after COVID patients coming in. There was marked uncertainty as to how the pandemic would develop and that created a very challenging environment.

I think though that peoples’ experiences of the pandemic have varied hugely from those shielding and the large demands that brought, to those working at home, people managing home schooling and those continuing to work. The separation forced upon people has been particularly tough.

Although it was challenging in healthcare, there was a strange normality for us in that we still came to work, travelled on the tube, and saw colleagues (albeit in different roles) which at least brought some structure to our time.

I think this experience will bring us all to reassess our priorities - hopefully for the better.

Q. Finally, how do you relax / enjoy life away from work?

A: As the weather improves, I’m managing to get out and about exercising a little more. I’m very much a ‘fair weather’ runner so now is my time to start putting a bit more effort in. With the limitations of the last year, I’ve had more time to spend in the garden. Although my gardening skills remain pretty limited, I’ve found it a great way to relax and sort out my headspace as everything carries on around me. Although possibly this isn’t pandemic-related and I’m just settling into my middle age!

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A long with PH Barbara Fraser lives in Melton Mowbray, Leicestershire.

Here, she reflects on 15 years since her diagnosis of Chronic Thromboembolic Pulmonary Hypertension (CTEPH).

We managed to cope, adjust to new circumstances and get on with life Barbara & Derek

SUMMER 2021 emphasis 52

path I

n February 2006 I was diagnosed with PH at my local hospital and three months later I was admitted to Royal Papworth and joined a blind drug trial of Sildenafil. Fortunately, I received the drug rather than a placebo as I subsequently found my life expectancy at the time, without medication, would only have been two to three years! The Papworth consultants confirmed I had CTEPH and so began a long journey which is still ongoing after 15 years.

The journey to diagnosis

When and how I developed PH I still do not know to this day. For some years previously I was getting more and more breathless. I spent two years undergoing various tests locally for asthma, allergies, stress, depression and windpipe obstruction, none of which indicated what the problem was.

In January 2006 I went away for our annual ski holiday with my husband Derek, my son and his fiancée. While on the slopes I felt really unwell and on returning home became so ill I was admitted to Glenfield Hospital in Leicester.

Oxygen therapy helped me breathe more easily but it was three weeks before the doctors finally found what was wrong.

The doctor said he would perform a right heart catheter procedure ‘just as a check’ and lo and behold, it revealed I had PH an illness I had never heard of before.

I was sent home and told to take oxygen all day and that I would be contacted by Royal Papworth hospital for ongoing treatment. I was a very active 52-year-old, a Scout leader, a local Lions

charity worker, had my own hairdressing business, my younger son was getting married in the summer, and suddenly my life was crashing all around me.

But somehow with the help of Derek we managed to cope, adjust to new circumstances and get on with life.

Help to live well with PH

Sildenafil stabilised my condition but had a very unfortunate side effect - severe and very long nose bleeds, sometimes for over six hours! So, in 2009 Sildenafil was replaced with Ambrisentan. I still get lots of nose bleeds but mostly now very short ones.

In 2011 Tadalafil was added to my medication and these two, together with a cocktail of supporting drugs, have kept me going ever since.

As it is for many people, PH has been a life-changing illness for me. Taking oxygen for 16 hours a day is ideal, but this is very restrictive, so I compromise by sleeping with oxygen overnight. I like to get ten hours so am a late starter each day. In the morning I have more energy but most afternoons I rest. I am still a Scout leader but sadly can no longer take part in many of the activities. I also continue to help as much as I can with the Lions.

Before the COVID-19 restrictions we enjoyed two or three holidays each year with winter sun in the Canaries a favourite. We always book self-catering as we love trying the local restaurants.

I can walk slowly but to get around more quickly, Derek has for many years pushed me in a wheelchair.

Four years ago in Tenerife we found we had booked half way up a fairly steep hill. After pushing me up the hill Derek himself felt the need of my oxygen!

We promptly rented a mobility scooter which proved so successful we bought a ‘portable’ one at home which we now take on the flights.

Science, surgery and looking ahead

Unbeknown to me, before my PH was diagnosed I had a bicuspid aortic heart valve (two flaps instead of three) which by 2019 was wearing out. The PH and heart consultants at Papworth were very concerned about the risk of operating to replace the valve but eventually concluded the risk to replace was less than risk of the valve failing.

Therefore, in November 2019 I had my first long stay in the amazing new Royal Papworth Hospital. Open heart surgery would have been too risky, so a new tricuspid valve was inserted using a transcatheter aortic valve implantation (TAVI) procedure. The operation proved to be a great success and when I came home after 11 nights, my family and friends all remarked how much less blue I looked.

The heart valve stabilised my condition but did not improve my breathlessness so balloon pulmonary angioplasty (BPA) was proposed. It was hoped enough lung blood vessels could be opened up to make a noticeable difference.

Despite all the Covid-19 restrictions the first session went ahead last November and the second in December. I was warned it could be many weeks before I see a real benefit so [at the time of writing this in February] I am hopeful of some improvement, especially when the warmer weather arrives.

But overall, I am so grateful to the amazing skill and dedication of the consultants and nursing staff at Royal Papworth for not only keeping me alive for 15 years but allowing me a quality of life. I have watched my seven grandchildren and my first great grandson grow and I hope to be around for many years to come.

SUMMER 2021 emphasis 53

Family Matters

MY SISTER, OUR PH Janice Lyons has pulmonary hypertension and unbeknown to her, her sister Jen did too – a fact tragically discovered only after her death.

Here, retired teacher Janice shares her family’s story.

I

was diagnosed with idiopathic pulmonary arterial hypertension in June 2015. Indications something wasn’t right began a year earlier when, for some unaccountable reason, my pulse rate would suddenly shoot up to over 180 beats a minute – causing wooziness, wobbly bowels, and throbbing pains in my throat and left arm.

After the diagnosis was confirmed, I told my family and signed up for a genetic testing project, which asked whether I wanted to be informed of any findings. I ticked ‘no’ in the box, which was to have the gravest consequences.

My sister Jennifer’s story is both heartbreaking and frustrating. Jen was found dead at home in October 2020 at the age of just 55 and her post-mortem revealed she had pulmonary arterial hypertension.

Jen had been unwell for many years with asthma, type two diabetes and severe arthritis, amongst a host of other ailments she never discussed. In the 18 months leading up to her death, Jen began having fainting episodes and during one of these blackouts she tumbled down the stairs at home.

Despite suffering from headaches and blurred vision for weeks afterwards, she refused to seek medical help.

“

Jen had a deep-rooted, irrational phobia of hospitals

”

This was to be the pattern of behaviour right up until her death. Jen would complain to us about symptoms and as soon as we mentioned the doctor, she’d agree to do something then

SUMMER 2021 emphasis 54 SUMMER2019 WINTER 2021emphasis emphasis22 34

do nothing, or wriggle off the hook with comments like ‘I’ll probably be all right tomorrow’.

Nobody enjoys going to hospital, but Jen had a deep-rooted, irrational phobia of hospitals. She was a frequent appointment-dodger and when we asked about test results Jen claimed doctors couldn’t find anything wrong with her. She was a medical enigma!

By October 2018, Jen was unable to walk any distance without struggling for breath. She had been a smoker, could it be COPD? As a family we nagged her to speak to her doctor; we even suggested paying for a private consultation to solve the mystery. Then, just before Christmas 2018, Jen collapsed again, while she was out shopping. An ambulance carted her off to her favourite place where she stayed for 48 hours. Surely now tests would reveal something?

In June 2019 Jen sent me a text – her hospital doctor wanted to know the name of my lung disease. She’d done some breathing tests which revealed she had a small obstruction in her airway which was causing the breathing problems. We were relieved – at long last she was taking our advice and getting help.

We can only speculate that Jen’s doctor suspected she had PH. He may have talked to her about visiting a specialist unit; the nearest being one of the London hospitals. But I believe her extreme fear of hospitals, plus the enormous effort it would take for her to make such a journey, proved so daunting she decided not to have treatment and to keep us in the dark.

As you might expect, left untreated, her symptoms worsened.

I had a text from her in June 2020 that said she had to come in from the garden because her legs were swollen, she had blurred vision and was feeling dizzy.

Janice, Jen and their mum in 1992

Jen and Janice in 1978

Jen and her daughter Terissa in 1994 The family together in 2020

“

I told her in no uncertain terms to ring 111 immediately. But now we had another obstacle in the way. Jen’s terror of hospitals was made worse by the fear of catching COVID-19. Her reply was typical: ‘It’s very hot today, I probably just overdid it’.

Then at the beginning of October 2020, Jen said she was vomiting and couldn’t keep anything down. She wondered if she had food poisoning. She also complained of having lots of pain in her neck, spine and legs. Once again, I advised her to contact 111. Predictably, she replied ‘it’s just me, I’ll probably be all right tomorrow’. And that was the last time I heard from her.

I sent her two texts after this, but she didn’t reply, and she cancelled a visit from her daughter Terissa and the

I should have ticked yes

”

grandchildren, saying she was too sick to see them.

We wish Jen had confided in us. We have no idea about her physical and mental state in those last few days and hours. Our mum, who has always had a sunny disposition, is distraught at losing her youngest daughter and has sunk into a depression.

Terissa, at just 27, faces a lifetime without her mum’s love, wisdom and support.

I was staggered to discover Jen died from pulmonary hypertension. Knowing PH is a rare disorder I made some enquiries with my specialist centre, who confirmed I had a mutant gene. It’s likely Jen had this mutant gene too. I should have ticked ‘yes’ in that box.

Jen in 2018

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Don’t forget to ‘start at smile’ when you shop online at Amazon!

All you need to do is shop via www.smile.amazon.com – this is exactly the same as the main Amazon site, but if you select Pulmonary Hypertension Association UK from the list of charities, we will automatically be sent a small percentage of what you spend. This doesn’t cost you a penny extra!

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In your autumn issue of Emphasis...

The next issue of Emphasis is due out in September and planned content includes: PH Week 2021

It’s back! Find out how to get involved

Coping with anxiety

New resources to help

Working with PH

Helping you make the right decisions Plus, lots more articles, interviews and news…

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SUMMER 2021 emphasis 5 7

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