The ‘PHA UK Conference’ is a much anticipated event in the world of Pulmonary Hypertension! 🙂 Tickets are requested months in advance, nervous chattering proceeds the emails stating if a place has been offered, and excited plans are made in the days leading up to the event. A chance to meet Facebook friends, learn more about the illness, and stay in a luxury hotel for the weekend.
Phil and I attended our first PHA conference a mere 5 months after I was diagnosed. We were new to the world of Pulmonary Hypertension, and desperate for any information. I clearly remember the fear of the first few hours. I was frightened by my fellow ill-looking attendees, scared of the blunt discussions in the talks, and overwhelmed by thinking about my disease all day. However as the weekend progressed, the panic subsided. I found people who’d had PH for years, spoke to those who’d improved with medicine, and repeatedly heard words of optimism. I listened and learned, chatted and conversed, met people and watched people. I entered the conference feeling unsure, afraid and isolated… but I left more knowledgeable, a little braver, with a couple of names of phriends. A positive step forward on my journey. I entered the conference feeling afraid of the future… but I left with hope. Hope that one day there would be a cure, hope that I’d make improvements on the medicines, hope that friendships would grow. It was a valuable experience for me.
The 2017 conference- our third- was once again to be held in Oxfordshire, a convenient 25 minutes from our home. A luxury hotel housed in a beautiful grand stately home, entered down a winding driveway through vast wood-edged grounds (Lottie would have loved running free there). There was a deluxe spa for the more able, a fab playground for the children, and an enormous comfy bed for me. It is well suited for a conference for disabled patrons: the event rooms were close together, the big bedrooms had enough space for scooters, and there were lifts and disabled access throughout. Strangely though, this year they had a problem with midges in the lifts and some of the rooms. Every time we used them, we had to batter the flies, and hold our breath so we weren’t breathing in too much fly spray! But it didn’t deter from the lovely venue.
The focal point of the conference were the talks- four hours of experts discussing themes relevant to the disease. This year the topics ranged from ‘Medicines’ to ‘Breathlessness Strategies’ to ‘The Welfare System’. As always, our favourite lecture was the one detailing the latest advancements, upcoming drugs, and hopes for the future. We left with added information about Denervation and Sexiplag. The morning session finished with an hour of questions-and-answers with a panel of experts. After a large buffet lunch, there were a range of activities to choose from. Some were serious seminars on ‘Anxiety’ or ‘Being A Carer’, others were fun sessions like ‘Tai-Chi’ or ‘Flower Arranging’. I was so busy chatting over lunch that I missed my booked place in the ‘Flower Arranging’ gathering, however Sue kindly gave me flowers to take home to practice with! The remainder of the afternoon was left free to meet people, wander the stalls along the corridor, or enjoy the hotel facilities. I spent half an hour being interviewed by the PHA for the patient section of their website, and social media posts… a video camera stared at me, whilst I tried to sound vaguely articulate! This year the theme of the gala dinner was pirates; so I sported a pirate hat, and a few donned impressive costumes! It was a lovely evening- yummy food, interesting conversation and good company (and we even won chocolates in the raffle!). However I retired to my bed as soon as the disco started!
For many of us attending, the highlight of the conference was to meet Facebook friends who we’ve grown to know through our computers. Phriends with the same illness, walking the same journey. I loved chatting and catching up. Some phriends I’d met previously, others I’d only ever seen online. It was great to finally say hello to people whose lives I’ve watched- their photos, their tales, their ups and downs- and yet have never met! Luckily everyone looked like their profile picture, so I could recognise them!
It was fascinating to sit and watch and observe. Although everyone had the one label of Pulmonary Hypertension, there were a great range of abilities and disabilities, and vast differences between us all. It highlighted to me that although we all fall under the umbrella term of PH, as there are many diverse causes of the disease, it affects people in a variety of ways. Some had minimal symptoms, and were able to dance at the disco, or swim in the pool. Some had more limiting symptoms, and needed scooters, and to rest frequently. There were people using oxygen continuously, people using oxygen for activity, people not needing oxygen at all. Red cheeks, blue lips, purple fingers. Phriends with IV pumps continually delivering drugs direct to their heart, phriends taking tablets, phriends taking no medication at all. Children with PH, young adults with PH, older folks with PH. So many differences, but all phighting Pulmonary Hypertension.
Despite only arriving on the Saturday morning, and resting for an hour in the afternoon, it was an exhausting weekend. To allow myself to chat to everyone, to allow myself to listen to all of the lectures, to allow myself to go to everything on offer… I used far more energy than I had, and plunged into the red. Consequently by the end of dinner, I was struggling to breathe, and talk, so retreated to my enormous bed to watch the remainder of the Eurovision Song Contest! And unsurprisingly I spent the next two days on the sofa recovering! However it was worth it! 🙂
The PH community is already looking forward to next years event! 🙂
We Can Adjust The Sails 
You captured the essence of the PHA conference perfectly in this blog, well done.
Like you, 3 years ago, this was my first conference having been newly diagnosed in November last year. I was keen to meet people who had PH and to better understand what my future had in store. There was such a range of symptoms and treatments across the group of people but patient showed strength, determination and optimism.
I was humbled by the tireless work the PHA people do and their passion and commitment. I found out about the PH Facebook groups which I’ve joined which provide wonderful online support. Overall the weekend has given me hope for my future and it’s helped me enormously coming to terms with my diagnosis. I no longer feel frightened and alone, I feel supported and empowered to move forward with my life and enjoy the future. I’m so grateful to now be a member of the PH family.
Many Thanks
Take Care everyone
PJ xx
LikeLike