Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: ‘Tess’s Story.’


I am Tess Jewson and I was born in the Philippines, adopted at 6 months old by my British parents and was brought over to the UK shortly after. I was born with 9 fingers (little finger on left hand missing since birth) and I have 1 lung. To top it off I was diagnosed with the incurable heart & lung condition, Pulmonary Hypertension (PH) due to a PDA (hole in the heart) in 2008. My only cure is a double lung transplant - but for now I am stable! Despite this I still play the piano and cello. I went to University twice, yes I must love my education, haha! First time to Southampton Uni to gain a Bachelors Degree in Music and second time to Anglia Ruskin Cambridge to gain a Masters in Music Therapy! Both of these times, were very difficult, but through sheer determination, and ups and downs of health, I managed to qualify and have my dream career. Since I was a little baby, my life has been hospital appointment, after hospital appointment. I should be used to them by now, but they are still part of my life. I am currently a patient of the Royal Brompton Hospital and I can't thank them enough for getting me to where I am today. I have been very lucky to have met the love of my life, Terry. We met online, and hit it off from day one. He has always been there for me and never got frightened when having to tell him certain things about my health. Many would've run for the hills! We happily got married in April 2017 and it was the Wedding of my dreams. We have now bought our first house and live with our Poodle, Izzy.

In 2008 I was diagnosed with Pulmonary Hypertension (PH) with Eisenmenger Syndrome. This is an incurable heart and lung condition which was caused by a hole in the heart (PDA - patent ductus arteriosus). This means the pressures in my lungs are so high, that my arteries have thickened, meaning it is harder for the blood and oxygen to pass, which has caused my heart to pump harder and faster leading to heart failure. The hole means oxygenated and deoxygenated blood and oxygen mix, meaning I don’t get enough oxygenated blood around my body. This causes severe breathlessness, chronic pain in the limbs and body, chronic fatigue with headaches and migraines, blue lips and palpitations. All these symptoms affect my daily life.

Before diagnosis I was a “normal” student studying for my A Levels at college, going out with friends on a daily basis, and playing my piano, as well as my trumpet and cello in orchestras around the world. I used to have my own music teaching business, teaching piano, trumpet and cello. I loved being my own boss as I could choose my hours and not have to travel. As I got more and more ill, I had to had to close my business to concentrate on living an enjoyable life without the stresses of work.

I have always had severe breathlessness and I was always told it was asthma. I tried every inhaler under the sun and I just wasn’t getting better. We had no idea that my hole in the heart hadn’t closed up and it had led to PH, which was causing my symptoms and making them worsen. It wasn’t until I collapsed at college with severe chest pains, that I was rushed to hospital and given my PH diagnosis. After many months in hospital having scans and tests, they found my hole in the heart hadn’t closed and it had led to the high pressures in my lungs, causing my heart to fail. I had a prognosis of 3 months and had to get on the correct medication or else I would die.

Yes I searched the internet, we all searched the internet but it scared the life out of us! It was agreeing that I had a short life and there was basically no hope! We’ve learnt not to use Dr Google again!! I can flare at anytime. My heart condition doesn’t care where I am or what I’m doing. I literally get sudden chronic pains in my legs that I can’t move or I get a chronic migraine and have to stop what I’m doing as I can’t see or I get palpitations!I never know on a day to day basis how I’m going to feel.

Pulmonary Hypertension is like walking on a bed of nails, you never know when one is going to dig into your foot and cause severe pain. If I have a flare it fluctuates to me being in bed for a day, to a week, to a month! I have just come to accept that PH is part of my life and I try and keep my symptoms at bay by taking medication on time and not “over do it” with busy days all at once. My main triggers are definitely having a busy day, as in going out with friends for lunch and shopping. The next day I’m in bed for the whole day trying to re-oxygenate my body.

As there isn't a cure for PH, I’m on dual therapy, meaning I take two medications a day. One of the tablets I take 3 times a day and the other only once a day. I have a few more medications to try before I need a double lung transplant. When you have PH, you learn what your limits are. You have a choice of living by your health or you can get out there, say yes I have PH but I’m going to take my medication, know my limits but make sure I continue to enjoy life and life it to it’s fullest.

After the shock of prognosis and negativity that came with my diagnosis, my illness has impacted my life in a positive way. Of course there continues to be many ups and downs, but it’s made me more determined to achieve the things I want to do in my lifetime.

The main thing PH stopped me doing is playing my trumpet. When I was told I could never play the trumpet again, I was devastated. The breath needed to play the trumpet would cause more damage to my heart. My career was playing the trumpet around the world in orchestras and bands. All of sudden that life was taken away from me. I am thankful I can still play my piano and cello, not around the world, but in my own home.

It has affected many friendships, but I believe when you get diagnosed with such a serious illness it makes you realise who your friends are. I believe, those who will stick with you and accept the new you are the ones to concentrate and love and those that don’t, they aren’t worth the time. I want to enjoy life with those who I love and love me. I was in a relationship at diagnosis, but I was young and it didn’t work out anyway. However I was always nervous when it came to dating. I was always honest when I went on a first date and told them straightaway about my PH. There wasn’t any point in hiding my condition, as it was a major part of me. A few did “run for the hills” which I don’t blame them, but I’m very lucky to have found the man who accepted me for who I am and is now my husband.

I stay positive because that’s who I am. I’ve always been a positive person and had the outlook that things will be okay in the end. It’s made me treasure and be thankful for every day of my life. It has definitely made me very determined to raise awareness and to help others with this condition, as it is such a rare one. I am very proud to have become an Ambassador for the only PH charity in the UK and I will forever raise awareness in hopes for a cure one day.

With the medical world advancing my hope for the future is that a cure will one day be found in my lifetime. I will forever raise awareness for Pulmonary Hypertension alongside the PHA UK, to help it to become a well known disease, instead of a rare one. Until then, I will continue raising awareness using #NoCureAlwaysHope, whilst living life to the full and enjoying each day with my husband, Terry and Izzy and seeing my family and my close friends.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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