The Pulmonary Hypertension Conference, October 2012

Heythrop Park

Each year, the charity that supports my illness, the PHA UK, holds an annual conference. This is a weekend conference for patients and their families and anyone else whose life has been affected by Pulmonary Hypertension. The conference is an ideal ideal opportunity for PH sufferers to meet other patients and their families, as well as be updated on current issues regarding PH and share concerns and worries about PH and it also offers a chance to take part in various recreational activities. There are a team of representatives from the PHA UK and also a team of medical professionals, who present the latest news and developments on PH and give their insight and views on questions we may have. Now for patients having a very rare and complex disease, I think we are extremely lucky to have this type of support.

When I was first formally diagnosed with PH two years ago, it was roundabout the annual conference time, but as I had just come out of hospital and had just been given new treatment, which hadn't had time to take effect, I was still too unwell to think of attending, although I really would have liked to meet some more patients with the disease and find out more about PH. Conference time came around again in 2011 and this time we had booked and were looking forward to it when I was rushed into hospital yet again a week or so before the event, so again we were unable to make it.  This year we booked to go yet again and I was delighted that this time we actually made it! And what a fantastic time we had!

The inspirational Stacie and her sister Megan

The conference was being held at Heythrop Park in Oxfordshire and by some strange coincidence was formerly a training centre for Natwest Bank when Rob and I worked there twenty years or so ago. So I felt I was in a bit of an uncanny situation again, never in a million years would I have even dreamed back then, when I was attending courses there, that I would be attending a conference here because I had a rare disease and was waiting for a heart and lung transplant! Sometimes we would like a crystal ball to see what will happen in the future, but its probably better not to know!

Now we were finally driving to the conference, I felt both excited and wary about the whole weekend. I was already in touch with lots of patients who were going to attend through the PHA forum and facebook groups and the Papworth PH Matters support group, but I was still apprehensive about actually meeting everyone and whether it would be my sort of weekend. After all, I couldn't have imagined myself ever doing this a few years ago or attending a weekend conference about being ill ever being my thing. On the PHA forums I had been lucky enough to come in contact with three other girls who have PH and have been listed for heart and lung transplants at Papworth, the same as me and we had exchanged mobile numbers so that we could meet and have a chat at some point during the conference. I had also made 'friends' with quite a lot of other PH patients too, who I hoped to meet.

Bente and me

We arrived on the Friday afternoon, as we were able to check in from 2 o'clock and enjoy the hotel's facilities: spa, golf course and gorgeous grounds before a buffet dinner was served. We just enjoyed a browse around the grounds and the hotel's lounges and Rob also had to make time for asking a question about genetics, which was filmed and then would be used at the conference along with other patients' questions during the question session on the Saturday morning.

Lynsey, Stacie, Megan with Colin and Carole

It didn't take long before we had met up with several of the other PH patients I had been in contact with and by dinner time we had gathered into quite a crowd to go to dinner together and here we met up with more PH patients at our table and I don't think we could have been any luckier with the lovely people we met up with. We all had a story to tell and enjoyed listening to each other. It was just so lovely to be amongst people who were going through similar things. It was also good for our partners to meet other partners and carers who were going through the same. Best of all it was great how we just all 'clicked', we enjoyed ourselves so much that night that we arranged to all meet up for dinner again the following evening. I have to say the atmosphere of the whole place was extremely friendly and Rob and I found ourselves chatting to everybody who came our way!

The following morning was the main conference itself and we had a great talk by a PH consultant and patients were given lots of information on PH and their concerns via the 'question and answer session'.  There are some exciting developments for PH coming and quite a few drug trials ongoing, so the future only looks bright. The actual conference session is live on the PHA website, therefore I wont go into it in detail on here, but can only stress how informative it was and again how lovely and respectful the whole atmosphere was around us.

Joss and Lynsey

Following another lovely buffet lunch, we went on to do the afternoon sessions, these ranged from jewellery making, golf sessions, relaxation, anxiety, transplantation and clay pigeon shooting. Rob and I both chose the 'transplantation' session, because we want to be as informed as we can prior to my transplant and then I did 'relaxation', which was most useful and Rob went off to do the clay pigeon shooting, where he had a lot of fun.    

The 'transplant' session was really helpful, it was run by a specialist PH nurse, who used to be a transplant co- ordinator, so she had a lot of knowledge of both our illness and what we have to come after transplant. I don't think I learned anything new, but it was just a tremendous help to go over some of the things that may happen and some of the processes involved. Again, we found it really helpful to know we were not on our own and there are many others in our shoes and also patients waiting for assessment outcomes and hoping they would be fit for transplant. This made me feel both humble and grateful to have been accepted for transplant as some patients were battling against all the odds to be accepted for transplant and for me the procedure had been quite a straightforward one. I hope they all have successful outcomes for the problems they have to face.

I think it has brought home to me that I should be a good candidate for transplant and although it will be a mountain to climb when it happens, I should have a lot in my favour to get myself through the process, however daunting, and I am going to hold onto this when it comes to what will be the biggest challenge in my life. It really helped being able to talk to a lady who had had PH and had received a double lung transplant, which had been a success, and although the lady now had transplant induced problems, some of them quite serious, her quality of life was still much better post transplant.

The event continued with drinks then a gala dinner and again we had lots of chance to chat to other PH patients and swap stories and phone numbers. On Sunday morning, we got chance to say our goodbyes and I think Rob and I met some friends who we will have for life and we will definitely be keeping in touch.

I came away from Heythrop Park thinking how lucky we had been to be supported by the PHA UK in this way and to have met so many fellow PHers, who were going through similar to us. Somehow it has served to help me feel less isolated now, we've got to know friends better and meet new ones and I suddenly feel more relaxed about being out and about with my illness.    I think there is lot to be gained for all of us from sharing our experiences with our illness.