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.       

   

Our Wedding Anniversary and Rob's Birthday Weekend 2012

Knebworth Park, Hertfordshire

A lot of changes have been happening in our household this autumn. Rose, of course has gone off to uni and is living in Bournemouth now; Sarah has just left her job at Waitrose and has just started working for the Liverpool and Victoria Insurance as well as continuing her sociology degree through the Open University and Rob has just returned to work, after a taking a year off with me, for three days a week. I am relatively stable with my illness and have been for the last year more or less. We are all getting used to the changes and for me, Rob's first week back at work and the absence of Rose felt a bit strange. We thought three days back at work would allow some normality in our situation, but also allow for us to continue having some good times together.

We planned to go back to the Lake District again for our wedding anniversary and Rob's birthday, which both fell on the same weekend. We also carried on enjoying a few days out here and there and exploring new places locally as we were having some lovely weather and wanted to make the most of it.

Waddesdon Manor

St Ives, Cambridgeshire

We went to the Papworth PH Matters support group, which meets each quarter and it is a good chance to chat and meet socially with fellow PHers. We have been going to this when we can for the last year or so and really enjoy it. We all take something to contribute to the buffet lunch and there is usually a speaker who updates us on various matters relating to PH. This time we had a talk about diet, so I am going to try and make an effort to cut down my fat and sugar intake following the talk! That will be difficult as I am partial to a cream cake or two with afternoon tea!

Hay making near Codicote, Hertfordshire

We went off to the Lakes as planned. The journey was horrendous, with at least six long traffic jams, but we got there eventually. Before my illness, we always used to set off at the crack of dawn and miss all the serious traffic, but now I find that too difficult to manage and we always seem to get caught up in traffic jams, making this journey that used to seem so easy quite a difficult one now.

Wimpole Hall, Cambridgeshire

We managed to have a lovely late afternoon meal, not sure whether it was a late lunch or an early dinner for our wedding anniversary and because of the tiring journey I wasn't feeling so good. The following day, because I wasn't feeling that well and because it was raining hard, we decided to just have a quick look out for lunch and then buy some nice food to cook for dinner. Our favourite place for this is Sizergh Barns, a nearby farm shop that also has a good cafe and craft shop to browse around too.

At Wrest Park, Beds with Sarah and Oli

We had only just returned from Sizergh Barns and put the roast in the oven when we got a phone call from Oli, Sarah's partner to say she had been admitted into hospital with an appendicitis. We had also already had a phone call from my mum telling us my dad had been rushed into hospital after a fall and we planned to visit him the following day once we knew what was what. That was not to be and instead we had to pack back up quickly, rush dinner and get back for Sarah. My philosophy has become 'you win some and you lose some', as life always seems to have a plan of its own these days! We did a quick twenty four hour turnaround and arrived home late on the Sunday. Well all was not lost, we had had an anniversary meal out, lunch out and a browse round Sizergh Barns at least!

We spent the afternoon of Rob's birthday at the local hospital with Sarah, who was in a lot of pain and still hadn't had her planned operation to remove her appendix. That evening she had the operation and a day or so later came home to us, so we could look after her. So much for my 'empty nest'. It was lovely to care for Sarah for a few days, again I felt like a proper mum, but it was a bit like 'the sick leading the sick' at times!

Dalham Tower Estate Milnthorpe Cumbria

As soon as Sarah returned home I was back at hospital again, this time for my routine check with the Transplant Continuing Care Unit. Here we were seen to very quickly for the usual routine checks: bloods, weight and an update with the transplant co-ordinator and a check with the doctor.  I also got chance to meet another lovely PHer, who is hoping to be listed for a heart and lung transplant. It felt like we didn't have long enough to chat as we had a lot in common with our PH, medication, transplant and children!    

August Bank Holiday Weekend and All Set for Uni 2012

Rudbekia in the border

Our plan to go off to the Lake District was scuppered for a few days because of my suspected line infection. I was really lucky as I was preparing to go to A & E, which is the last thing on earth I wanted to do on a bank holiday weekend, the doctor from Papworth called me back and agreed to let me go there to get a swab and blood cultures taken. This was a great relief as A and E and bank holidays equals lack of staff and plentiful drunks from my experience.

Sweet peas at Askham Hall

As usual, the staff at Papworth dealt with everything efficiently and I was in and back out of hospital within less than an hour, swabs done, blood cultures taken and antibiotics and painkillers prescribed just in case. The only thing that delayed us was the wonderful British bank holiday weather. We had to wait an hour before we could set off to Papworth because of a tremendous thunderstorm. The rain was flowing in torrents down the main road like a river and it was pouring in through an air vent like a waterfall into our bathroom, fortunately over the bath so it didn't cause too much damage. It was maybe just as well that we hadn't set off up to the Lake District.

In the Orchard at Askham

We delayed for a day or two, just in case things deteriorated, but thank goodness things seemed to have been nipped in the bud and off we went to Cumbria. Here we visited Askham Hall Gardens and a few of our favourite places and we also went to see my mum and dad in Lancashire. My dad is still really poorly.

Relaxing on the beach at Sandbanks

Last minute preparations in the flat

When we came home, it was time to get Rose ready to go to university. Rose did a lot of this herself as she knows it is hard for me to go shopping in bulk and for any length of time. We had given a lot of thought as to how I was going to manage taking Rose to university. Bournemouth is a journey of about two to two and a half hours from us, so from the start I knew I would not manage this in a day, like others might. I also needed to allow for the exhaustion of getting ready to go and travelling and also for if I might be having a bad day illness wise on the day. I really wanted to go with Rose and Rob and see where she would be staying and where she would be studying, so we made a plan. We booked a flat in nearby Sandbanks for three nights. That would give me a day to get there and rest before we moved Rose into her accommodation the following day, then an evening to rest and Sunday to relax before we went back home. This allowed also for plan B, if I was too unwell to help her move in, I would be able to just rest in the flat, help myself to food and drink when I wanted and potter about while Rose and Rob did the 'moving in'. I would then have Sunday to go and see where she was staying before we went home.

Sandbanks

Kites at Sandbanks

Boats at Christchurch

When it actually came to it, I was feeling pretty good because we had paced everything and I helped her with her move and then we had an enjoyable two days before returning home. With a bit of extra thought and planning our mission was accomplished! I felt like a proper mum.  All in all we had a really successful weekend, Rose was happily moved into her new digs and we had a chance to explore Sandbanks, Poole and Christchurch.