Countdown to Christmas

Hello Readers,

Wow! What a crazy month it’s been since my last post!! It’s been so busy with Pantos and end of semester work for Uni!

Firstly, my health has been up and down. I’ve been so busy I feel physically drained! I’ve managed to get through to the Christmas holidays, but my body is telling me to slow down now! Even though I have work for Uni to do, I will chill out and enjoy as well, otherwise my body will make me rest and I’ll end up in hospital! Last thing I need at Christmas time!!!!

Secondly, Cinderella, the Panto with KYDS went extremely well and I’m very fortunate to work with such a talented and great group of kids! They put on 3 fantastic performances and the audiences loved it!

Goldilocks and the 3 Bears, the Panto with Knyghts Variety went extremely well too! It’s so great being part of a fun and energetic group and I’ve had such a good time playing piano for them. Again, they put on 3 fantastic performances in which the audience had a great time!

I can’t believe the shows are over for another year, but it’s been so much fun being part of both groups and hopefully I will work with them again next year!

Whilst juggling panto rehearsals, I’ve been attending Uni and I’m still writing my MA dissertation! Writing for the dissertation is in full swing and I’m setting myself deadlines to finish chapters of the essay. Slowly but surely I will get there!! My final improvisation exam on the 14th went well too, I think! Haha!

So that’s it, I’ve finished Semester 1 of my final MA year! Only 5 more months to get this dissertation written and sit my final exams! Time is flying!!

On the 13th December it was my Dad’s anniversary. I can’t believe it’s been a year since his passing. Each day I think of him and something reminds me of him, but I know he’s watching over me and he’ll always be in my heart forever!

My music teaching business is slowly winding down for Christmas. A few more lessons to teach next week and then it’s holiday time! I’m so excited for Christmas and New Year’s Eve. So much planned, Christmas dinners and parties and I can’t wait to spend it with family and friends!


Thanks for reading and I hope you all have a fantastic Christmas and NYE. See you in 2016!!! I know 2016 is going to be amazing... so much to look forward to!!!

My 25th Birthday

Hello Readers,

I’ve celebrated another milestone in my life, this time another birthday! On Friday 13th November, I turned 25... I am defying the odds, since my Pulmonary Hypertension diagnosis 7 years ago and have reached my mid-20s. I’m still going strong and touch wood, my meds are keeping me as well as possible. I still obviously have my ups and downs days, for example, after a very busy week I’ve been using crutches for support, as the pains in my body have been so bad.

Luckily, I managed to rally round to celebrate my birthday on Friday. I had a fantastic day celebrating it with Terry. We went to London to go ice-skating at Canary Wharf and then onto the Pancake House. I was spoilt rotten with some lovely presents too! I also received many cards, as well as birthday wishes on Facebook. So thank you to those who sent me their wishes. A truly amazing birthday this year and can’t thank Terry enough for such a great day, as well as my Mum for everything she does for me too!

As always I put all my energies into having a good time that I’ve been absolutely exhausted, along with the pain, but I am slowly recovering for the start of a new and hectic week in the life of Tess Dunn!

Quick update - The two Pantomimes I am involved in are coming upon us fast. Cinderella with KYDS is on 27th-29th November and Goldilocks and the Three Bears with Knyghts Variety is on 4th & 5th December. In the meantime I best continue on with my Masters Dissertation!

Anyway, here’s to many more years of living life to the full, whilst PHighting Pulmonary Hypertension until a cure is found!

Thanks for reading and your continuous support! x



2015 PH Conference

Congratulations PHA-UK on your 15th Anniversary!!
Hello Readers,

I had a super weekend at the PHA-UK 15th Anniversary Celebrations Conference at the Crowne Plaza, Oxford. Throughout the conference speakers included top PH Consultants and our very own Stacie. The talks were very informative and the seminars were interesting too. I especially enjoyed learning CPR with St John's Ambulance.

For someone who suffers from Pulmonary Hypertension, the promising and positive attitude given by each speaker was such a comfort. There are so so many new treatments in the pipeline, that there is no way that any of us can not have continuous hope! There may not be a cure for Pulmonary Hypertension, but there’s one thing is for sure; we are all PHighting together for a cure!!

Another very important part of attending this conference was finally meeting my PHriends! After speaking to many PH’ers on Facebook, it was great to meet them face-to-face after typing to their picture over the years! Everyone was so positive and friendly and it was lovely to get all dressed up for the circus themed Gala dinner, which took place after a spectacular fireworks show. Together we danced the night away as one big PHamily! 

I want to thank all the PHA-UK staff for putting on such a PHantastic 2015 conference!! This was my first PH Conference and what an experience it was!! Thank you to everyone who made it so welcoming and I can't wait for the 2016 Conference!!

For more information on Pulmonary Hypertension, support this charity, or get involved.. click here

Unfortunately, I wasn't well Monday morning, but I had a busy weekend at the conference. Like every PH sufferer we put all our energy into having such a good time, that we do wear ourselves out. This is what people don't understand and see. People see us getting on with our everyday lives and having a good time, looking 'well' but they don't see the after effects. These include, migraines, exhaustion, going on oxygen and being bed bound! This is why we are always trying to raise awareness for PH, to encourage people to be aware of what it's like to live with Pulmonary Hypertension.


My Twinnie Tina

Stacie

Catherine

Carole

Another month has passed!

Hello Readers,

It’s been a month since my last post where I was campaigning for people to join the Organ Donation register. I’m hoping many people have considered this and are now part of the ‘Gift of Life.’

It’s an extremely busy time of the year for me as the second year of my MA Music Therapy course has now begun. At the start of the month I was poorly and ended up in hospital again, but that was sorted quickly and I was back on my feet within a week.

After missing the first day of Uni, I returned on 5th and it’s good to get stuck in again. Even though I do have to start writing my 15,000-word dissertation. A title, which is yet to be decided – I better, get my thinking cap on!!

Whilst studying for my Masters, I am currently attending rehearsals as I'm Music Directing 2 Pantomime’s for end of Nov/Dec. The first one being Cinderella with KYDS, and the other Godilocks and the 3 Bears with Knyghts Variety. I'm also continuing my new job as a part-time Music Teacher, which I am absolutely loving and teaching for my own music business, Treble Tess Music.

….So yes, my life is rather hectic at the moment, but I must remember if I want to continue this lifestyle, a rather busy but enjoyable one, then I need to pace myself as much as I can and keep everything under control to avoid unnecessary stress and hospital visits!!! I would like to return to my consultant in January and tell him that despite my busy life schedule, I've been able to pace myself, allowing me to keep well - least I've had my flu vaccination!

At the end of this month, I will be attending the Pulmonary Hypertension conference in Oxford. I am very excited to meet fellow PH-ers and attend seminars and presentations from healthcare professionals and those who are living with PH. It'll be good to support those who are behind all the good work of PHA-UK. Our charity who help research and awareness for PH.

As always I thank my family, boyfriend and close friends for their continuous support and understanding and I can’t wait to celebrate with them for my upcoming birthday in November! I’ll be 25, so another milestone for me, since my Pulmonary Hypertension diagnosis as a 17 year old.



I love my Paddy <3

It's National Transplant Week

Speak to your loved ones and one day SAVE many lives!


"Yes life can be tough, but I get by, a double transplant one day I'll have to try" - read my full story here





Register Here and sayidonate

Summer Update

Hello Readers,


It’s been a while since I last wrote a blog post, but here it is!


Firstly, I haven’t been feeling well as had to restart tablets that I stopped a while ago, but unfortunately my body decided to become intolerant to them so I had to change them quickly!! They made me feel so nauseas that I couldn’t do anything. So I after ringing up my nurse specialist, she changed them to tablets that are similar, but at least my body can tolerate these ones instead! It was so strange, as I’ve never had a reaction to the other tablets before. Oh well, it’s all sorted now and I can get on with life again!

I have also returned to Colchester General Hospital for scans, this included an ECHO, but I haven’t heard anything from it, so I assume, no news is good news!

Also, I’ve been a lucky girl and went on another holiday with Terry. We celebrated our Anniversary and went to the Isle of Wight. We were so lucky with the weather, it was hot and sunny and I think we covered the majority of the island whilst we were there, visiting many of the famous attractions! These included The Needles, Blackgang Chine, Godshill, IOW Steam Railway and Shanklin. All in all, we had a fantastic time together! Here’s to another year!

Jet Boat around The Needles

<3

It’s now back to work, teaching with my Treble Tess Music business. I’m also very excited to start my new job as a part-time Primary School Music Teacher. This will fit in well for when I return to my MA later this month!

Well I think that’s all folks,


Thanks for reading!

BHF Campaign Feb 2015 Completion

Hello Readers,

So in February 2015, I wrote a blog post informing all of you that I had become one of the faces for the British Heart Foundation for their new campaign. This campaign was called Wear it. Beat it and it involved everyone coming together at work, school, etc and wearing from head to toe in RED! 
£1.2 million has been raised!


Today I received the BHF magazine, NewsBeat and have found out that thanks to the nation's support, we have helped raise £1.2 million to help fund more life raising research! 

It was fantastic being part of the campaign and I had a wonderful time meeting the BHF team! I'm so glad I am able to help raise funds and awareness for people with Cardiac Disease, especially my own particular heart condition... Pulmonary Hypertension. There is no cure, but there is always hope!


Goodbye & Thank You Respiratory

Hello Readers,

So since my positive hospital appointment in Cardiology last week, I attended the Royal Brompton Hospital again this week. This time I went to see my consultant in Respiratory. The last time I attended an appointment in Respiratory was in 2012. I repeated the same tests for the lungs, such as Spirometry, which is a lung function test. The results of these had no change and my chest was clear! The Consultant was very pleased to see that I had no sign of deterioration in my lung (Yes I have 1 lung… I had a lower right lobectomy at 6 months old). And he is also confident that my asthma is of no worries now! So much so he has signed me OFF!!!!!!!

I am no longer under the Respiratory team of the RBH and will only be monitored for my Pulmonary Hypertension with the Cardiology team. However I am in good trust to know that if changes ever occurred within my lung, I would be referred straight back to Respiratory by my Cardiologist!

In other news..

I finally met a lovely, strong lady, Shani. We met through the Pulmonary Hypertension group and we both have the same kind of Pulmonary Hypertension. We are of the same age (born a week apart, haha) so it was wonderful meeting up with her over a spot of lunch. We definitely chatted the hours away and I can truly say she is a very inspirational young lady with lots of hope and optimism for life! Another true PHighter!

Me and Shani
More news...

I have since gone to another Cardiology appointment, this time at Colchester General Hospital (my local one) and saw my Cardiologist. He was very pleased to hear that I have been doing well and he was very interested in my studies for Music Therapy. He did all the usual tests - chest clear, no infection, but very low blood pressure (even I was surprised!) so I've got to take it easy and drink lots of fluids in this weather!! Overall a very good appointment and not needed until April.

That's it!! All hospital appointments for 2015 over.... I hope!!!!!

A Positive Hospital Appointment


Hello Readers,

I went to the Royal Brompton Hospital in London. It was such a long and tiring day, but something that has to be done. My last appointment was in December, so it's been a while since I last saw my consultant.

I woke up bright and early to get the 7am train to South Kensington. Once there I went straight to ECHO. An Echocardiogram is a test that uses ultrasound to produce moving, real-time images of your heart. The procedure helps to check the structure of your heart and how well it’s functioning. 

I had my appointment with the consultant and I told her despite everything that had happened since my last appointment, ie; my Dad’s death, my MA exams, holidays, etc, I had been quite well. I mentioned my episode of being in hospital in June - this was put down to stress and over doing it. Otherwise I hadn’t had any infections or been on antibiotics!

She told me my ECHO had come back fine – no change or deterioration with my heart and my heart muscle is beating as strong as ever! So all good news there! My ECG also came back normal (normal for me) as well. The medication is obviously doing its job since my diagnosis 7 years ago, and they are happy for me to stay on this, so no changes there either! Happy days!

I then met up with my Nurse Specialist, had a catch up with her about my health and then did the usual 6 Minute Walk Test. I did very well on this, and have beaten my Personal Best, which I made back in December – so yet again more good news!

I had the usual gory blood tests – yet to find out results from them, but I am sure if anything was wrong, they would get hold of me straight away!

Of course, I put my very best into the tests that I have to do, because that’s just me! So yes, I was pretty shattered! However hearing the words you’re stableis the best news to hear, as of course each time I have to attend an appointment I am always nervous as to what is going to happen. Will it be good or bad news? Am I getting worse? Will I need to change medication? Questions like these are spinning around in my head as I travel there!

Finally, despite all this good news, I must remember that I am able to live this life as I must follow my limits and not over do things, as most of my close friends and family are telling me 24/7!!! Haha! There may be no cure for Pulmonary Hypertension, but one thing is for sure, I will keep living life to the full until a cure is found!

So there it is, a positive hospital appointment!

Thank you to those who continue to love and support me throughout this journey!

Much love, x


Hope and Holidays

Hello Readers,

So it’s been a while since my last blog entry...

Firstly, us PH'ers were given a new glimmer of hope thanks to Cambridge research. "Research by Cambridge scientists which offers hope of first treatment targeting the cause of a debilitating heart and lung disease has been welcomed by a woman who has been suffering with the condition for seven years. A study funded by the the British Heart Foundation (BHF) and carried out at Cambridge University has found a protein that targets the effects of a faulty gene could offer the first treatment targeting the major genetic cause of Pulmonary Arterial Hypertension (PAH)" 

For people like myself, this is great news as the only cure for those with PH is a heart and double lung transplant, which can have serious risks and complications. Whether this could help my kind of PH is another thing, but research like this, always brings new hope!

I found out this news thanks to a phone call from the British Heart Foundation, which was followed by another phone call from a reporter for the Cambridge News. I spoke about my diagnosis and living with Pulmonary Hypertension and my opinion of this hopeful news! You can read my interview in the Cambridge News, by clicking on the following link... Cambridge News

Unfortunately I had a crippling migraine between holidays. I hate these as they knock me out for a couple of days. Mine are due to the lack of oxygen getting into the nerves of my brain, which I just have to live with.

Apart from that, I have been fortunate enough with my heart being stable, meaning I have been well and 'fit for flight' to go on two fabulous holidays!!!!!!

First holiday to Greece with my Mother, which we thoroughly enjoyed and it also incorporated my Brother’s Wedding! This was a lovely, lovely day and it was so wonderful being part of their special day!!

Mum, JP (bro), Angie, Me
Me and Mum

Second holiday, I flew to Majorca with Terry. We hired a car, which meant we visited attractions in our own time, such as Caves of Drach, Mini-Golf, beaches, as well as just chilling out and sunbathing by the pool. Overall a fantastic holiday together!

Last Night in Majorca
Beach Time





Now back to reality and start reading a big pile of books so I can look into writing my Master’s Dissertation. I also have my routine appointment with the Royal Brompton Hospital next week, you’ll be sure to know I will let you know how it goes!

A Special Meeting

Hello readers,

I went to Papworth Hospital, with Terry and visited Stacie Pridden! Stacie is a very courageous and strong young lady who I met 3 years ago through the Pulmonary Hypertension Facebook group. Many people, like myself, have been following her blog in her wait to getting a double lung and heart transplant. 3 years on and after 3 false alarms, Stacie finally got the call for her transplant and I knew from that moment, when visitors were allowed, I was going to go and meet her!

Me and Stacie

I had a super time talking to Stacie in person for the first time and she is an inspirational young lady! We chatted for a while and it was good to get to know her and I am pleased to see how well she was doing. I can't wait to see her again soon and I will keep on wishing her a speedy recovery, to get stronger and stronger.

Selfie Time

As you can tell it was a delight to see Stacie, and I am so glad to see her going from strength to strength after a transplant. I, too, may one day need a double transplant as for now it is my only cure for Pulmonary Hypertension, but seeing Stacie has been very positive for me and for what is yet to come. Until then, as always I will go by my motto of 'living life to the full!'

As you can see organ donation is vital for many of those on the transplant list. It not only gives hope to those who are waiting, but gives a new lease of life to the person as well. If you are not on the organ donation register, but would like to be an organ donor, then please register here!


Become an Organ Donor Today!

7 Years PH Anniversary

Hello readers,

It’s been a very successful and busy weekend! Luckily after my stint in hospital and getting topped up with oxygen, it’s really helped to get me through the weekend… and hopefully longer! However I did chill out on the run up to the shows, so that must have helped too!


If you have read the “About Me” you will know it’s been 7 years since my diagnosis of Pulmonary Hypertension!!! I can’t quite believe that I’m doing the things in life that I’m doing right now and I’m in a happy place! Yes it’s been a rollercoaster of a ride since ‘that’ day, but wow have I stunned my doctors in how far I have come since then. It’s funny how the focus and attitude towards life can change after being told I may not live until 18 years old, but thanks to that, my strength and determination has got me to where I am today and I wouldn’t change it for the world! The love and support from those close to me is incredible as always and they have seen me through the real tough, and happy times of the past 7 years. A special mention to my little loyal 4-legged companion, Paddy, who has been there for me for the past 5 years of this.. I swear he knows everything about me, haha! Anyway, doctors are still happy with me and it’s good to know that I am stable and can do the things I want to do in my life. Right now, it’s finishing my MA degree in Music Therapy, whilst enjoying everything else I love in-between!! Living life to the full!

7 Years PH Anniversary



My little loyal 4-legged companion, Paddy


So back to the weekend.. I’ve been Music Directing the show Dracula Spectacula with KYDS and it’s been so much fun! The three shows were such a success and the children performed brilliantly. Very proud of them all! I will definitely miss working with them, and I can’t wait to be involved in the next show!

One Proud MD


Anyway to end on, I’ve got an enjoyable rest of the month ahead, starting with watching the Little Shop of Horrors at the Mercury Theatre, seeing Terry and then my brother's special day... he's getting married! Wonderful! <3


MA Year 1 - I've passed!!

Hello readers,

Unfortunately I wasn't able to get over my tiredness from Uni and I was in A&E on Monday due to severe chest pains, after climbing 2 flights of stairs. I went straight on to Oxygen and my sats started to increase. I had the usual x-rays and ECG, both came back 'normal' for me.. so nothing serious! I was let out in time for my final day at Uni! To be honest, I think I've done my usual and over done it lately, what with stress of exams, and lots of musical activities happening at the same time, but I love what I do, and I'm still determined that PH isn't going to hold me back!!!


Got to love Oxygen!!!



On a good note though... Today is all about celebrations! 

I have passed the first year of my Masters Degree in Music Therapy. It's been a very difficult year as my health hasn't been that great this year and I've also being coping with grievance as my father sadly passed away at the beginning of the year. The support I have received throughout the months from close friends, my mum, my boyfriend, course mates and lecturers has been outstanding. I definitely wouldn't be celebrating my great results now without these people in my life.




Music Therapy Course Friends

However, I have made it, and I am looking forward to a holiday-filled summer!!


Dracula Spectacula

Hello readers,

As you have probably have seen by now I live for my music!

I am currently the Musical Director for the dramatic society, KYDS, and I am absolutely loving it. Yes it's tiring, but I love working with this group and the performance standard of the children in the show is outstanding!!

We've been rehearsing for the past few months and have got the show coming up on Friday and Saturday! I can't wait!!

Final rehearsal is tomorrow and all is looking great for the show!!

I just have to pace myself until those 2 days!!!

Final Exam

Hello readers,

Today I had my final exam!!

My previous improvisation exam went well.. I think!! :/

Lets hope today went well too!!

I've been so worried and stressed over these exams, I've had little sleep, but hopefully now they're over, I'll be able to get back to a routine sleep and try and rest my body. If I push myself too much, I will be ill. Hopefully I'll get over my tiredness without a hospital trip.. but we'll see!!

MA Exam

Hello readers,

I've had a lovely weekend in Little Walsingham with my co-music therapy students. We put on a great concert raising money for the Music Therapy appeal. However it was such a long weekend, I was absolutely shattered and today I have an exam.. hopefully I won't fall asleep during it!!!

Post Concert
So as you have just read...  Today is my first exam for my MA Degree!!! Eeeek! I'm so nervous... It's an improvisation exam, meaning I have to make up music on the spot! Wish me luck!! :)

Dublin

Hello readers,

I went to Dublin with Terry for the Easter Weekend!!

Health was pretty good and behaved itself and we had a really great time!

We spent the days using the hop on- hop off bus and visited many attractions. Some being..

Guinness Factory
Jameson Whiskey Factory
St Stephen's Park
Dublin Castle

Guinness Factory

Jameson Whiskey Factory
Dublin Castle
St. Stephen's Green

Arsenal vs West Ham

Hello readers,

Today I had the luxury of watching the Arsenal vs West Ham game from an Executive Box!

No I'm not a football fan at all, but Terry is!!

As a birthday present, courtesy of my Uncle, I took him to the game with my cousins. It was an exciting game, Arsenal ending up winning 4-0!!

Unfortunately I wasn't well at the beginning of the day, suffering from a migraine, but I managed to rally round before we headed up to London! The drink and food was amazing and we all had a super time!!
AFC vs WHU

Terry, Me, Dan, Tommy, Joe

Me and Terry

Iron Infusion

Hello readers,

So today I've finally able to go to the Royal Brompton Hospital to get my iron infusion. I've been feeling really tired lately, and have done a lot of sleeping. This is due to the lack of iron in my system, thanks to my heart condition iron gets kicked out of my body!!! 

Hopefully after this is all over, I'll be back up on my feet again and back to Uni!! I absolutely hate missing anything that's important, ie uni, so I really hope I'm not too far behind! I just want to get on with life again without wanting to fall asleep every hour!!!!

Wear it. Beat it. Campaign Feb 2015

Hello readers,

On the 14th August 2014 I was lucky enough to be invited to a photoshoot and interview with the British Heart Foundation. I had a super day, wearing red from top to toe... literally!!! I loved meeting many of the workers of the BHF and enjoyed meeting people who are also living life with a heart condition.

This day was in aid of today's Wear it. Beat it. campaign!!! For this campaign we were encouraging everyone to wear read and raise awareness for people with cardiac disease. My intention was to bring my heart condition, Pulmonary Hypertension to the forefront.

Today, my interview was released along with posters and pictures from that day. I felt proud to be a Heart Hero for the British Heart Foundation, whilst raising awareness for many people who are in the same position as me!!

Thank you to the British Heart Foundation for giving me this opportunity and giving me such a memorable day!!


Poster of the Heart Heroes
My poster
Thank you from the British Heart Foundation
We wore RED - Paddy, Mum and Me!

Hospital Appointment

Hello readers,

Today I saw my Cardiologist and all is good for me anyway!!

My sats are good, although my iron levels need topping up, so an infusion has been arranged for ASAP!! Hopefully it'll stop me looking like a 'ghost' and wanting to sleep all the time!!

I did well on the 6MWT and apparently it's my personal best, so I'm happy!!!! :)

My heart muscle is still strong and he's happy for me to stay on Sildenafil 100mg three times a day! So that's great news!! No tablet changing yet!

I did complain about my legs being in so much pain, but unfortunately it's part of my condition, where not enough oxygen and blood will go to my lower limbs... I just have to live with it. Co-codamol at night it is then!!!

Anyway, I am happy that I am stable at the moment and will get on with living life to the full, keeping positive as always! Next appointment is in July 2015! Fingers crossed it's still good news for me! :)


Happy New Year!

Helloooo Everyone!!!!

Well it's goodbye to 2014 and hello 2015!!

I hope everyone had a fab time celebrating the new year!! I had a super time, spending it with my boyfriend, Terry and his mates! Time to sleep!