A stroke of success

A stroke of success for Catherine

PHA UK member Catherine Makin won two medals at the British Transplant Games, combining a love of swimming with a celebration of life.

Taking gold in the breaststroke and silver in the backstroke was the icing on the cake for Catherine, who entered the Games to give thanks for her second chance.

She had a double lung transplant in January 2020, five years after being diagnosed with pulmonary hypertension, and swimming is now

“I’m absolutely chuffed to pieces and so proud of myself. It’s all thanks to my beautiful donor who lives on in me.”

an important part of her routine.

The British Transplant Games took place in Leeds at the end of July and saw 850 transplant recipients come together to compete in different disciplines.

Catherine, who has been swimming since a child, was inspired to enter following a conversation with her transplant team and after seeing the Games covered in this magazine previously. She had already been swimming two or three times a week since her operation, so it was an easy decision to make. “I thought why not give it a go?”, she said. “Swimming helps my lung function and keeps me healthy, so I was already ‘training’, but it was more about taking part than winning. I couldn’t believe it when I got the medals!” Catherine was part of a team of 20 transplant recipients from Manchester’s Wythenshawe Hospital, and they all took part in different disciplines. Despite being an experienced swimmer, she admits to feeling nervous when she saw the size of the pool at the venue. “I panicked when I saw it was 50 metres as I’m used to 25. I’m also not used to people watching me swim, but it was a really good atmosphere.”

Catherine and her family stayed in Leeds for five days over the event, and together they took part in the non-competitive ‘Donor Run’, a mass participation jog organised by the British Transplant Games to honour those who give the gift of life.

“It was just a really good weekend, and I met lots of nice people”, Catherine added. “I’m absolutely chuffed to pieces with the wins and so proud of myself. It’s all thanks to my beautiful donor who lives on in me. There isn’t a day that goes by when I don’t think about her, or her family.” .

Keeping busy at home this Christmas

Far from being ‘stuck’ in the house because of PH, Diane Taylor enjoys hours creating crafts for people she loves. This is what her handiwork means to her…

I 've

I've lived on my own since my husband died in 2005 and I struggle with a lot of things now, like getting dressed. I have nurses that come in and I can go a long time without leaving the house. I went out just five time in the first eight months of this year, but there is a lot that I do to keep busy at home.

I started making scrubs for hospitals during the pandemic and I taught my grandson how to make his own for his dentistry course at university. I do little needle-felted animals, Christmas calendars, nativity scenes, and Harry Potter characters too.

I also spend time doing genealogy for people, investigating who they are related to, and I attach little resin photos of ancestors onto dangling strings that can be hung on a Christmas tree.

I mostly give things away to family, and I also give bags of what I make to my local hospice who cared for my husband, so they can sell them on a stall.

I love new challenges, so once I have mastered the art of making one thing, I’ll move onto the next. I order my supplies online, and I teach myself. Looking on YouTube is a good way of getting started.

Over the years the family have all had bits of what I make. At the moment my daughter-in-law keeps asking for little mice for her cats! I’m lucky that my family live locally and visit a lot; they are always popping down or phoning me and asking if I need any help.

Every Saturday, my two sisters come round and cook for me, and we all eat together. This will probably be the first Christmas that we don’t all cook for the whole family as it’s too much for us now, but we will be together.

The crafting helps me stay positive and I stay positive because I’m stubborn. I’ve been ill since 1997, when medical stuff started going wrong, and I’ve had that many things done to me that nothing bothers me now. Things don’t frighten me anymore.

TODAY

Could you help us understand what it’s like to live with PH today? Please spare a few minutes to complete the important survey that was sent with this issue. You can complete it online instead at bit.ly/LivingWithPHToday

Five years ago, we conducted the largest ever survey into the lived experiences of pulmonary hypertension in the UK – and it is now time to see what’s changed.

The impact of that survey has been huge. Since 2017, the findings have been used to inform and underpin our work as a charity, secure access to new treatments, and influence government decisions.

They have been used in our collaborative work with NHS commissioners and specialist centres, and they have influenced the National Audit of PH, service provision, and much more.

It’s vital that we understand what it really means to live with PH now, so we can compare the findings and use new evidence to influence change. This is especially important as we move out of the pandemic and work to secure access to the best treatments and services for this disease.

The findings of this survey will influence so much over the next five years, so it cannot be underestimated how important your voice is today. Please take the time to share it.

Concerns about life expectancyn Major impactn Some impactn No impact General mental / emotional wellbeing n Major impactn Some impactn No impact Relationships / family n Major impactn Some impactn No impact Ability to attend work / education n Major impactn Some impactn No impact Financial situation / financial worries n Major impactn Some impactn No impact The National Audit of Pulmonary Hypertension (a care quality measure carried out by NHS Digital) states that people with PH should be seen at least once a year by a PH specialist. Do you feel this frequency is appropriate for your needs? n Yes n No Do you think you have contact with your specialist PH doctor or nurse often enough? n Yes n No When you visit your specialist PH doctor or nurse in person, how far do you travel? n 0-20 miles each wayn 20-50 miles each wayn 50-100 miles each wayn More than 100 miles each way We have included a freepost envelope with the questionnaire mailed with this magazine, so there’s no need for a stamp. If it’s easier for you, and you’d like to save us the postage fee, you can complete the survey online instead. Just type bit.ly/LivingWithPHToday into the address bar or search engine, or scan this code >>> Please share your thoughts and experiences before 31st January 2023

TODAY

Do you think it’s better to travel to a specialist PH centre than to be under the care of a non-PH specialist at a more local hospital? n Yes n No Do you have difficulty travelling because of: Physical health? n Yes n NoCost? n Yes n No Do you use hospital-provided transport to attend your face-to-face PH appointments? n Yes, often n Yes, sometimes n NoAppointments with PH specialists now take place either face-to-face or over telephone or video call. When would you feel it would be more appropriate to be seen in person? (Please rank in order of importance, with 1 being the MOST IMPORTANT to you, and the 4 being the LEAST IMPORTANT to you) n When I feel my condition is changing n To seek reassurance my condition is stablen To discuss new treatmentsn When I’m struggling with symptoms or my condition In general, how would you describe your PH care? n Excellent n Goodn Fairn Poor How would you describe your gender? n Male n Femalen Other preferred description(Please state) What is the first part of your postcode? (eg. HU15 or S36) This is so we can see where people with PH live in relation to the location of specialist centres. Please be assured you cannot be identified by providing this information. n What is your ethnic group? Choose one option that best describes your ethnic group or background n White English/Welsh/Scottish/Northern Irish/British, Irish, Gypsy or Irish Traveller, Any other White background. n Mixed/Multiple ethnic groups White and Black Caribbean, White and Black African, White and Asian, Any other Mixed/ Multiple ethnic background. 5 ABOUT YOU This helps us understand which groups of people are affected most by PH. What is your current age? nyears What was your age at diagnosis? nyears

nAsian/Asian British Indian, Pakistani, Bangladeshi, Chinese, Any other Asian background.n Black/ African/Caribbean/Black British African, Caribbean, Any other Black/African/ Caribbean background.n Other ethnic group Arab, Any other ethnic group. 6 MEDICAL RESEARCH INTO PH Have you ever been asked to take part in medical research by your PH team? (This does not include non-medical research conducted by the PHA UK) n Yes n No Would you welcome being asked to take part in medical research by your PH team? n Yes n No All responses to questions on this survey will remain anonymous. If you would be happy to be contacted by the PHA UK in the future, by mail or email, to take part in similar questionnaires, please complete your contact details below Name

Address

Email Please be assured that your responses to this survey and any follow-up questions will remain anonymous. The contact details you provide above will be used only for the purpose of this research. Please return this form in the FREEPOST envelope. No stamp needed. PLEASE RETURN BY 31ST JANUARY 2023. If getting to a post box is difficult, or you would prefer to fill this out online, scan this code or go to www.bit.lyLivingwithPHToday Thank you for your time.

TODAY Dear valued member, Five years ago, we conducted the largest ever survey into the lived experiences of pulmonary hypertension in the UK – and it is now time to see what’s changed. The impact of that survey has been huge. Since 2017, the findings have been used to inform and underpin our work as a charity, secure access to new treatments, and influence government decisions. They have been used in our collaborative work with NHS commissioners and specialist centres, and they have influenced the National Audit of PH, service provision, and much more. It’s vital that we understand what it really means to live with PH now, so we can compare the findings and use new evidence to influence change. This is especially important as we move out of the pandemic and work to secure access to the best treatments and services for this disease. If you are an adult with pulmonary hypertension, please complete the questions overleaf and return in the freepost envelope provided with this pack (no need for a stamp!). PLEASE RETURN BY 31ST JANUARY 2023 If you would prefer to complete this survey online, you can do so by visiting www.bit.ly/LivingwithPHToday or scanning the QR code at the bottom of this page. We plan to conduct a separate survey around children and PH in the coming months. The findings from this survey will influence so much over the next five years, that it cannot be underestimated how important your voice is today. Please take the time to share it if you can. Yours sincerely, Iain Armstrong Chair, PHA UK

Can you help us understand what it’s like to live with PH today? Please spare a few minutes to complete this important survey

TODAY Can you help us understand what it’s like to live with PH today? Pulmonary Hypertension Association UK www.phauk.org Registered Charity No: 1120756 Complete this survey online Please spare a few minutes to complete this important survey Freepost PHA UK