PH and Radio

Dear Readers,

Most people listen to the radio at some point during the day, whether at work, in the car or at home. 

As I've grown up I've listened to my local station nearly every day and as I've always been an early bird, I tuned in daily to Heart Essex Breakfast show with Martin and Su and their producer Alex. 

Sadly local stations are slowly being cut, which is such a shame, and it was their final breakfast show this morning. I've gone to many of their public events and I've enjoyed listening to them first thing in the morning. When I was in hospital for many months with my diagnosis of Pulmonary Hypertension, I always listened to them first thing, on very quietly in the ward so I didn't wake other patients, but the banter and laughter between Martin and Su always cheered me up and brightened my days in hospital. Especially when I was alone before my parents arrived to see me. It was good to have such down to earth and "real" DJs on our local radio. 

We all have our favourite radio stations and DJs, but for me it was and always will be Martin and Su and I will miss listening to them everyday. I grew up playing lots of classical music being a pianist and cellist, but Martin and Su's breakfast show kept me up to date with the pop music, haha! It feels like it is an end of an era for me, but I want to thank them for helping me to get up every day when times have been hard with PH and cheering me up when things have been tough. 

It just goes to show that it's not only friends and family that help you through illness, but people that you haven't even met, but listen to daily can make a big impact on your life too, just by doing their job. We all have our individual ways of getting through life, but radio and music plays a big part in mine. Thank you for reading out many of my texts and tweets! 

I want to wish them all the best with their future careers and it was great to finally meet them on their last day and chat to them personally. 

I hope they will join many others who follow my fight for life against my incurable heart condition and journey to getting a double lung transplant one day.

Thank you for reading!

PH Clinic Time

Dear Readers,

On Friday 24th I returned to the Royal Brompton Hospital for my PH clinic. Terry and I got up bright and early and made our way to Westfields, Stratford. We are signed up to theSmart Parking meaning we only pay £6 to park there for the whole day and going so early we can get a space near the shop entrance without using my blue badge. I like taking it into London with me should I need it for proof of disability for any reason - we like to explore and do things in London after my appointment.

Armed with my oxygen we grabbed some breakfast and then took the underground to South Kensington. Due to the amount of stairs and walking on the Underground, we choose the most accessible route. We arrived at the Brompton early, for once, haha, and I went in and had my ECHO. To those who have an ECHO, I don’t know about you, but I nearly fall asleep in there! I’m usually being scanned for 45 minutes-hour and with it being so dark, and stuffy, it makes me want to nod off! I swear I’ve slept through many scans! Haha!

After my ECHO, we walked over to my PH clinic, where I saw Carl and Stuart, our PH nurse specialists, sitting in the waiting area. I “ran” up to them and said hello, then waited patiently for my appointment. Today I saw Dr McCabe and overall it was a positive consultation. My ECHO showed that there wasn’t any change or deterioration with my heart! Yay! My medication is keeping me stable and he was happy with how I was looking and doing generally. So a great appointment!

After my consultation, I did the dreaded blood tests... it worked first time, phew! I may have to have them every month, but still hate them, haha! Afterwards, I did the 6 minute walk test... this is to see how far I can walk in 6 minutes. And yes I have BEATEN my personal best distance again!!! I know I haven’t been exercising for too long, but it definitely helped. Ever since the conference and being told that exercise is good for us, I now go jogging with Izzy every morning. I don't go that far due to breathlessness and I have to make sure I rest, as I don’t want to exert myself, but I hope as I get stronger, I can slowly increase my time and distance.

Overall, it was a very positive appointment and I am very pleased that each time I have visited the Brompton, not only am I improving my 6MWT, but I am staying stable and haven’t had any deterioration. Yes I will still have my good days and bad days, but I am making sure that I will fulfil my dreams and live life to the full. I will return to the Brompton for my next appointment in 5 months time... I'll be nearing another birthday milestone of 29 years old! Wow! Who would've thought I would be as stable as I am at this age! Until then I will keep living life to the best of my ability and know that when I have bad days, I will bounce back and good days will outweigh the bad.

After my appointment, I was feeling well, so Terry and I decided to make the most of our time in London whilst the sun was shining and we went to Hyde Park. We had a lovely picnic and then went on a pedalo on the lake - Terry did the majority of the pedalling!! 😂

        

Thank you for reading!

    

PH Conference 2019

Dear Readers,

I'm currently sitting here in front of my laptop still buzzing from the weekend. I really have pushed my body to the limits over the last few weekends, as we have been so busy, but I have loved every minute! After a few days of resting from our weekend in Wales, Terry and I had another jam-packed weekend ahead of us, this time the PHA UK 20th Anniversary Celebration Conference.

The conferences are always an exciting time to look forward to as it's a weekend dedicated to those with Pulmonary Hypertension. We love listening to the lectures from PH experts and hearing how far PH has come and what is yet to come for the future. It always relieves some doubt and reinstates positivity for the future of Pulmonary Hypertension.

This year, I put myself forward to host a music workshop, so our car boot was full to the brim with instruments, PH stuff and of course Terry's golf clubs (in the hopes he would have time to go and have a round!) After a 4 hour drive due to traffic and accidents, we arrived at Heythrop Park Hotel in Oxford on the Saturday. After a lot of to-ing and fro-ing to unpack from the car to our room, we eventually went downstairs and caught up with the PH'ers who had already arrived.

We spent the rest of the day catching up with our PHriends and meeting new ones too. I was super excited from the minute we got there and I loved being there and having a good catch up with many people. Due to my social media and blogging, I've met many PH'ers online, so I was really looking forward to meeting those I'd spoken to over Facebook and to finally put a face to picture and to see them was great! I've spoken to a few mum's of children with PH, so it was lovely to meet them as well. Terry and I had an early night, as we knew the following day was going to be a busy one.

The Sunday started off with a welcome talk by our PHA UK chairman, Dr Iain Armstrong, followed by a morning of lectures from PH experts. All of these talks were very interesting and were given by Dr John Wort, Neil Hamilton, Wendy Gin-Sing and Carl Harries of Royal Brompton Hospital, Hammersmith Hospital, Sheffield Teaching Hospital and Sheffield Pulmonary Vascular Disease Unit. In the afternoon, 2 more talks were given by Paul Corris and Natalie Doughty, but unfortunately Terry and I were busy and couldn't attend these, however we were busy doing a really fun workshop. These talks will be available to watch online soon via the PHA UK website and I will share the link with you as soon as it goes live.

Q&A Time with Natalie Doughty, Dr John Wort, Neil Hamilton, Wendy Gin-Sing & Carl Harries

The music workshop kicked off at 2pm that afternoon and it was lovely to get PH'ers together through the sounds of music, both playing and singing. I wasn't sure who was going to turn up and I had to adapt the workshop to suit the ages of those who attended. We had a fun time of singing songs and playing instruments. Those attended also had the chance to try instruments they've never played before. Some of the PH'ers were already musically talented, so it was great to play our instruments together, whilst others sang along. It's wonderful how whether or not you can play a musical instrument, music can still bring people together and you can still have a good time. As most of you know, I am also a Music Therapist, so I was in my element hosting this workshop.

  

  

  

After the music workshop, I was shattered! It was a great hour of music playing, but I'd put all my energies into making sure it was as fun and as musical as could be, therefore I was zapped! Terry was there to help tidy up and carry the instruments back to the room, where we chilled out until it was time to dress up and go down for the celebratory meal. We sat down with our PHriends and enjoyed a 3 course meal followed by dancing the night away. By the time it hit 11pm, I was falling asleep leaning against that wall, haha, so we went back to our room and I was asleep soon as my head hit the pillow!

        

   

Before we went home, Terry and I went into Oxford and had a look around and enjoyed the sights of the beautiful city. I took my mobility scooter, so it was fun scooting around not having to worry about getting breathless. It was a lovely end to a super weekend!

                                             
                           


The event was fantastic and as always the PHA UK did a fantastic job of organising another successful conference. All the talks were very interesting and having a weekend of being surrounded by others who have PH is very comforting. It is like we are in our own bubble and when you leave the bubble, you definitely miss it! To be able to talk to others and know that they understand you is a really good feeling. This year there were a few doctors/nurses from the Royal Brompton, so I enjoyed catching up with them!

PHA UK celebrated their 20th Anniversary and it's amazing to see how far they have come. There are around 7000 people with PH in the UK and around 6000 are members of this charity which is fantastic! PHA UK are the only charity who support those with PH in the UK and we wouldn't have the help, support and medication if we didn't have them. They hold us PH'ers together and we are so thankful for everything they do for us! As Neil Hamilton said in his talk, we have lots of medication and treatments now, but it is thanks to the PHA UK and us PH'ers coming together to fight for what we deserve! So congratulations to the PHA UK!!! Thank you for your continuous hard work and dedication to us - here's to the future! We are definitely #strongertogether!

Presentation slide from Neil Hamilton's talk - The PH Jigsaw

We as a PH community will keep on PHighting until a cure is found. We will keep raising awareness and making sure PH is understood by everyone all around the world!!

Keep following my Facebook, Instagram & Twitter. New vlogs going live next week! 

Thank you for reading!

Weekend in Wales

Dear Readers,

Terry and I recently celebrated our 2 year Wedding Anniversary! We can't believe it's been 2 years already.. time sure flies when you're having fun!

We decided we would go away this year and so we went to Wales for a long weekend, taking Izzy with us! We stayed at a wonderful farmhouse, with our own hot tub, in a place called Mold, which isn't far from Snowdonia. We highly recommend this stay and loved having our own bungalow to stay in for the weekend. We had it all to ourselves, it was self-catering and situated in the beautiful Welsh countryside. A lot of privacy, which allowed us to relax and enjoy the views and sound of the countryside! If you're ever looking for a place like this, then please click here... Glan Llyn. We would definitely go back and stay here again!

We arrived on the Friday and spent the whole afternoon in the hot tub drinking champagne and eating chocolate dipped strawberries - bliss! It was good to relax after a long 6 hour drive up from Essex. 

On Saturday it was our actual Anniversary and the weather was absolutely dreadful and we got soaked through to the skin, due to Storm Hannah! Unfortunately our train up to Snowdon was cancelled, but we spent the day driving through the mountains and countryside ending up in Betws-y-Coed and then onto the National Slate Museum and having a train ride along the lakes to end the day. It was very cold, wet and windy, but we still had a great time!

On Sunday, I think we were still defrosting from the day before, haha! It had stopped raining, but after such a busy day before, I was pretty exhausted, so we spent the whole day chilling out at the farmhouse and spending time in the hot tub with takeaway pizza! Yes we made good use of our own private hot tub!! After a lot of research, we found a lovely pub nearby, which had just won the best dog-friendly pub in North Wales, and had a delicious Sunday roast. The residents were very welcoming and so friendly!

Monday was soon upon us and we had to do the long drive home! We got up early and headed to the Peak District. We went to a village called Bakewell, which was very dog friendly! So many dogs were there for Izzy to meet, whether outside or in the shops/restaurants. The markets were on, so we had a look around those, and of course ate the famous Bakewell tarts. We then drove home, where I have been sleeping non-stop to build my energies back up!

We had a wonderful stay and it went so quickly. We had brought so so much with us, mainly because we wasn't sure of clothing and the weather, but due to my PH. We had to bring portable oxygen, so I could use it on the journey, as well as in the morning and evening of each day. My mobility scooter also came with us - that was great for all the walking we did, especially having Izzy. There were so many things we had to think of before we went away and again, Terry did a lot of planning to find accessible areas for me and making sure I wasn't over doing it. We visited Conwy Falls (NOT accessible friendly!) we came upon it, so we hadn't researched this place. However we visited the falls and it was down a very steep mountain, how did I get back up? Terry piggy backed me to the top... good workout for his Mud Run this month! Haha!

It was the first holiday where I was actually visible with my PH. In some ways I was happy that I wasn't having to explain myself, ie blue badge, but it also felt strange and I was very conscious to be seen with oxygen and scooting around on my mobility scooter. I suppose it was very difficult to adjust to being visible, but it just goes to show that whatever your age, chronic conditions are real and when you do need that extra support and you shouldn't be ashamed to use it or ask for it wherever you are. My oxygen and mobility scooter saved me from being ill whilst we were away and stopped me from having to take pain killers for my legs and because I didn't have to walk anywhere, I wasn't ever breathless. It really helped having these, so I could enjoy my holiday and not worry about my PH. When my PH does behave on good times like this, it's always a bonus!

Thanks for reading!