A life lived to the full

Christine Took is thankful for the many years of memories with her husband John. As she prepares for her first Christmas without him, she shares her reflections on behalf of their family.

WWhen my husband John was diagnosed with pulmonary hypertension at 59 in 2006, I feared the worst. On the brink of retirement, it seemed all the plans that we’d made would not be fulfilled. Whilst John was very poorly at the beginning of his diagnosis, he did make huge improvements after finding the right balance of medication.

When John was given the all clear to travel, we began our tour of the globe. We were incredibly fortunate to build so many wonderful memories in the US, Europe, Australia and New Zealand, including a wonderful Christmas in Florence in 2013 – most memorable for a three-hour midnight mass!

Back home, John was a dab hand at DIY. Our four sons, whilst we love them dearly, are not the best when it comes to home maintenance. Many calls were

Our allotment provided a sanctuary from what was going on in the wider world

made to come over and fix all manner of household issues. Regardless of John’s PH, he was always ready with his toolbox and paint-splattered overalls to get to work.

When the first lockdown hit in March 2020, we did find life challenging but always found ways to keep ourselves entertained. Our allotment provided a sanctuary from what was going on in the wider world. We visited daily (socially distanced from everyone else, of course) and watched our vegetables grow as the seasons changed.

We’d pickle onions from our allotment and John turned his hand to cooking, baking bread and delicious savoury treats.

John loved his four boys and four grandchildren. They meant the world to him. Just six months before John passed away, we spent a family weekend in Stratford during Halloween. Despite being very poorly, John was front and centre of the proceedings, dressed as a ghost to accompany my witch outfit.

Our final Christmas together was a low-key affair at home… until our third son, based in the US, came through the door unannounced. John was ecstatic to see him (as was I).

John loved a flutter, especially on the horses and football, but he was a conversative gambler, never betting anything more than a pound each way. Just before John passed away, he was in the process of picking his horses for the Grand National.

He is sorely missed by us all, but the memories we have made together keep us smiling. John’s love of the Rolling Stones meant his recessional music at his funeral had to be ‘Hey, you, get off of my cloud.’ He wanted us all leaving the service with a smile on our face, and he certainly did that.

I want to give my thanks to the

“He is sorely missed by us all, but the memories we have made together keep us smiling”

John with his sons, L-R Robert, Christopher, Michael and David. PHA UK for all their support over the years, as well as Hammersmith Hospital, the doctors and the specialist nurses, all of whom cared for John so wonderfully. Our boys have raised over £10,000 for the PHA UK with their marathon endeavours over the years, and we’ve raised a further £630 since John passed away. We will be sending a further donation to them at Christmas, as a present to our dad, bampi, brother and beloved (but sometimes exasperating!) husband! Yours was a life well lived, John.

What a day! Say cheese! Our newly-launched PH Day UK took place on 4th November, and we’d like to thank everyone who took the opportunity to raise awareness of pulmonary hypertension. From posting selfies and sharing stories, to displaying posters and sending our packs to your GPs, the support came from far and wide.

PH 2022 DAY UK

Lou Chadburn completed her mile during a weekend break in Whitby Adam Fraser, 10, jogged a mile in memory of his grandma

Lots of you rose to our ‘Go the extra mile’ challenge, covering the distance in support of everyone affected by PH. In many cases, funds were raised as well as awareness and we are truly grateful for this kindness. This is just a small selection of what some of you got up to…

Bolton Stroke Team combined a walk with a bake sale

We couldn’t include everyone in the PH Day UK feature, but our thanks go to you all!

Myra Morrison and her husband went the extra mile together

Ivy Cox joined her grandma and dog for a mile in the rain Mark Pincock flew the flag for PH during a running event in Dubai Alan Nicol trekked 43km in just one day across London, one km for every year of his wife’s life

Sarah Pyett walked a mile each day of November

The theme for PH Day UK was #HearOurVoices and many of you shared your stories to make yourself heard. Over the next few pages, hear from three members who did just that >>>>>>>>>

“There is so much to learn about PH”

Preston-based Danielle Masterson was diagnosed with idiopathic pulmonary arterial hypertension just months after giving birth. At 34, she shared her story for PH Day UK to show that the condition affects people of all ages.

Igave birth to my little girl Loretta in August 2020, and by December, I was so breathless I couldn’t get up the stairs. I was given an inhaler by my GP, but things didn’t change.

Seven months later, I was shopping in Asda with my mother-in-law and kept having to sit down. She told me my lips had turned blue and insisted on calling the doctors.

They checked my oxygen levels, and they were so low that I was sent to my local hospital in an ambulance.

A scan showed the right side of my heart was double the size of the left, and more tests followed.

I was referred to a specialist centre in Sheffield, where I was diagnosed with pulmonary hypertension. Everything was explained to me, but I was so poorly and panicked that it just went in one ear and out the other.

I had already spent two weeks at my local hospital, and I then spent another four weeks in Sheffield. I missed Loretta’s first birthday, and my husband’s 30th.

I thought I was going to die, and that I’d never see my daughter start school. I was on eight litres of oxygen at rest, and I couldn’t even get out of bed to go the toilet. I was so ill that my independence was gone, and for someone so young, that was a big thing.

An altered life

My only option was to start on intravenous medication via a Hickman line, and although I was worried about it, I knew it would mean I would have longer with my little girl.

Within a couple of days of being started on it I could manage to walk, and every day I got stronger.

When I was discharged from the specialist centre, I cried with

Danielle in July 2021 on the day she went into hospital

the emotion because it felt like the team there had become part of my family. They saved my life, and I am so grateful to them.

I do feel like PH has changed everything. I have to carry oxygen around with me and I can’t pick my little girl up. I can sit on the floor with her, but I can’t play with her properly. I used to love having baths with her, but I can’t anymore [because of the Hickman line] and I can’t go swimming with her either.

Loretta, now two, has been brilliant with it all though. If she sees my line hanging out my bum bag, she’ll tuck it back in. It’s all just part of her life now.

Changing perceptions

Because I’m young, I get funny looks and stares from the older generations when I park in disabled bays. Someone even wrote ‘60 +’ on my windscreen as a way of telling me I couldn’t park there because I wasn’t over 60. I have to take oxygen with me when I go out and if Danielle, Loretta and Adam

PH 2022 DAY UK

people are close enough to see the cannula in my noise, I then notice snide comments about what might be wrong with me. I just wish people would be more understanding.

I waited so long to have Loretta. Before her, I’d experienced three miscarriages, and lost my baby Lilly-May when she was stillborn at 38 weeks.

I had a lifetime planned of things I wanted to do with Loretta, but all of a sudden, not even a year after she was born, I was told I had this disease.

Being diagnosed with PH was such a big shock for me and my family and even now we don’t fully understand it. There is so much to learn, and I just want to spread awareness and help more people to know about it. It’s important for me to help people understand that you don’t have to be over 60 to have this disease; you can be 34, or any other age, too.

Read Talisa's story

“I still feel like I have to prove that I’m ill”

Talisa Shurlock is 34 and lives in Essex. She was diagnosed with PH in July, after a long battle to find out what was wrong – and some people still don’t understand her invisible illness. Talisa shared her story for PH Day UK to raise awareness and help others who may be feeling the same.

Iwas exercising at home during the first lockdown when I started getting dizzy and out of breath. I used to go the gym every day before they shut, so I was a fit person, which is why I noticed it wasn’t right.

When I saw my GP about it, I was referred to an asthma nurse and given an inhaler. I knew I didn’t have asthma, but because of the pandemic, having a spirometry (lung function) test wasn’t an option.

For a whole year, I was trialed on different inhalers, but none made any difference.

Just after Christmas 2020, I went back to my GP and asked for a respiratory referral. I was also given a long covid referral, as they thought that’s what could have been making me ill.

The long covid appointment came first, and the doctor couldn’t understand why my oxygen levels were so low during the six-minute walk test I was asked to do. I had five or six appointments to investigate long covid, but it wasn’t diagnosed.

Things were getting worse and worse throughout last year. I went abroad, and when I walked up a flight of stairs at the airport I passed out. It got to the point where I couldn’t even get dressed without being out of breath, and I couldn’t walk and talk at the same time.

It was all very frustrating because I felt like the doctors I saw thought I was making it up. I was trying to explain I was out of breath – but they were telling me I had a clear chest x-ray, I didn’t have asthma, and I didn’t have long covid. I kind of felt like no-one really believed me.

Finally getting answers

Eventually, in March of this year (2022), my respiratory referral came through and I had a number of scans, one of which showed a thickened artery.

I was referred from my local hospital to the specialist PH centre at Royal Papworth Hospital. When I knew I was being referred, I looked up PH and researched everything about it, so I sort of accepted that’s what it would be.

I did a weightlifting competition just one day before my right heart catheter [a ‘gold standard’ but invasive test used to diagnose PH] and the pulmonary hypertension was confirmed.

A tiny bit of me was relieved they knew what was wrong so I could then go forward and have treatment.

I was told straight away that I shouldn’t do any more weightlifting. I still work out, but without weights, as it helps with my anxiety. Sometimes I wonder what the point is, but it’s important to me that I still exercise every day.

Living with a disease no-one knows about

My family and friends are as supportive as they can be, but it’s hard because no-one has ever heard of pulmonary hypertension. I feel like I’m always having to explain what it is because I don’t look ill. It’s invisible unless I try and walk up some stairs.

I feel paranoid that people don’t believe I have a serious health problem, because I go to the gym, and I don’t look unwell. I feel like I have to prove there is something wrong.

Talisa weightlifting before her diagnosis

I have social anxiety, so I didn’t go out much anyway, but PH has made the anxiety worse.

I feel self-conscious using disabled toilets when I’m out because of PH being a hidden disability. The toilets are often in the middle of a restaurant or in front of everybody, and I feel uncomfortable that people may be thinking there is nothing wrong with me.

Having PH has affected the anxiety in a number of ways. I haven’t been able to work for a while [because of being ill] so now I’m scared to go back to work. It’s also the low mood. It does sometimes catch me and make me feel quite depressed, even though I know there are other people with PH who are worse off than me. Thinking about the future is difficult. But exercising helps keep me positive and I’m also having cognitive behavioural therapy (CBT) for the anxiety which is helping. My specialist centre has also been amazing. I want people to understand that just because you can’t ‘see’ PH, it should still be taken seriously. I still feel like I have to prove that I’m ill sometimes, and it would be so much better if people knew more about it. I also wanted to share my story because it has really helped me reading about others who have PH. So, if I can help just one person in return, it will be worth it. #HearOurVoices

PH 2022 DAY UK

Read Charoula's story

“I am a person, not a statistic"

Charoula Michael was diagnosed with PH whilst pregnant during the pandemic, and she defied the odds to be able to share her story. To mark PH Day UK, the 39-year-old from Surrey explained what she went through, and why more people to need to understand this complex disease.

Ifelt very breathless and had extreme fatigue throughout my pregnancy with Andreas, who is now two. I just knew there was something wrong, and at around seven months pregnant I was being asked to go into hospital for daily checks on the baby because of the position of my placenta.

During one of these visits, I asked the midwives to check my oxygen levels, as the previous night I had been gasping for air. The levels were so low that I was admitted immediately, because they thought I had covid.

This was during the fist lockdown in April 2020, and I was taken to an isolation room. My husband couldn’t be with me, and all the staff were in full PPE. It was terrifying.

I had numerous tests, and a consultant came to see me. I will never forget the look on his face; he looked like he had seen a ghost and he was stumbling over his words. He told me my heart was double the size it should be, and I was being transferred to a high dependency pregnancy unit at another hospital. I can’t explain how petrified I was.

Getting the right support

I was met at the unit by seven consultants, all pacing up and down. They said I had a serious condition called pulmonary arterial hypertension and there was a 50% chance of survival for both me and my baby.

I was transferred to a room in intensive care and started on some PH treatment that would give me a better chance of living when the baby was delivered.

I had nurses with me 24 hours a day. One stayed next to me and one stood guard at the door, because I was at such high risk of covid.

I still couldn’t see my husband, and none of my family live in the UK, so I felt completely isolated. But I was determined to live, for my baby.

After a week, he was delivered by caesarean section. There were about 20 people involved in the surgery and I had to have life support lines inserted, in case I crashed.

Andreas was tiny, and struggling to breathe, so I could only hold him for four minutes before he was taken to intensive care. Because of covid risks, I was only able to see him twice in two weeks. I was fighting for my life, and the only thought I had was that my son was doing the same and I couldn’t be with him.

After three weeks doctors decided that because I was now responding to PH medication, I’d be safer at my house, away from covid risks in hospital. Andreas was moved to a nearer hospital, and eventually he came home.

Doctors think I had PH for a long time, and it was the

Charoula in hospital in 2020 Andreas was taken to intensive care after he was born PH 2022 DAY UK

pregnancy that exacerbated it. I was told that if I hadn’t got pregnant, I would never have started on treatment, and one day my heart would have just stopped. I do believe that getting pregnant essentially saved my life.

Two and a half years after all of this, I am stable on my medication and the size of my heart is reducing. I’m able to live a fairly normal life, and for that I feel lucky.

I want other people with PH, especially mums diagnosed during pregnancy, to know that it doesn’t have to be a life sentence. My story shows that a happy ever after is possible.

Andreas has been the main motivation to keep me going through all of this, to wake up every day and fight. PH is not going to win.

Not all days are good ones. You carry your life expectancy on your shoulders, but there is no shame in not coping sometimes. I still have nightmares about everything that has happened, but I am getting help.

Andreas shortly after his birth

Fighting an invisible illness

A lot of people don’t understand what it means to have PH and how it can affect your life. To many, a sick person is someone who has cancer. I don’t look ill and I am a very determined person, so most people around me don’t understand just how unwell I am and how serious my condition is. They don’t have any empathy or sympathy because they don’t understand it. I feel like the only people who do are the PH community. I get judged by people that don’t know me too. I’ve been told by a stranger that I should be ashamed of myself for using a disabled parking space when I don’t need one. There have been times when I’ve refused to use my blue badge even though I desperately needed it, because I just couldn’t cope with the looks and what people would say. #HearOurVoices

I wanted to share my story so the wider public can learn more about invisible illnesses and understand that those living with them need support rather than judgement. I am a person, not a statistic, and not everything is black or white.