Careers and hobbies

At the age of 18, Amina became breathless and dizzy during a volleyball match that, after a stay in hospital, led to her diagnosis of PAH. At the time she was planning to study medicine at university, which she was then advised against.

Amina took it upon herself to become an expert in the condition and after researching universities that were best suited to students with additional needs, Amina applied for a Master's degree in International Finance and Banking. One major benefit of her course is the option to watch lectures and complete tests online when she is not well enough to attend in person. In addition to her studies, she has also completed internships in administration and finance, with flexible, four-hour working days and remote working opportunities that best complement her life with PAH.

Currently, Amina is supporting a local non-government organization (NGO) project to help empower 300 unemployed women through developing new skills to increase employability, as well as positivity and reduce stress. Leading by example, Amina enjoys a wide array of hobbies with a focus on art and homemade crafts, which keep her feeling balanced when times are hard.

She is grateful for the opportunity to do philanthropic work, which she says allows her ‘to look beyond my PAH diagnosis and help others achieve their goals.'

After being born with a congenital heart defect, Catarina underwent heart surgery when she was only six months old. At the age of ten, she was diagnosed with PAH and advised to stop all forms of exercise immediately. As a consequence, Catarina was bullied by others at school and felt isolated when she could not join her friends in sports and swimming classes. After overcoming her difficult teenage years, Catarina has found new confidence in herself and feels that adults are much more accepting of her condition.

Working in her local hospital had been an ambition for Catarina for some time. Despite initial concerns from her mother and doctors that the job might be too tough for her, Catarina has successfully been a personal care assistant for the last three years and is proud to be able to support the nurses on the wards. At first she found the long hours on her feet very tiring. However, she now has more flexibility and has learnt how to adapt which tasks she completes depending on how well she feels.

Catarina has also taken the time to focus on her personal life in parallel to her career. In September 2019, she is getting married and plans to go through the adoption process with her husband, so that they may safely start a family of their own.

Reflecting on the challenges she has overcome, Catarina would advise others to, ‘Never give up, because I never gave up and now I feel victorious.'

At 16 years old, Melinda experienced her first symptoms of breathlessness. A large blood clot was discovered in the artery to her left lung, before it stopped working altogether. After two months of treatment in the intensive care unit at hospital, she was given a diagnosis of PAH and told she may only have one year left to live. Now almost ten years later, through close management of the condition, Melinda is still going strong.

Melinda applied for and was accepted into a very competitive university, where she completed her studies to become a dietician. She even wrote her thesis on dietician in pulmonary hypertension, for which she achieved an excellent grade. Working as a fully-qualified dietician is incredibly rewarding for Melinda as she teaches others how to look after themselves and even prevent disease through optimal nourishment.

Melinda admits that living and working with PAH is an emotional and physical burden at times, and contributes some of her success to the unwavering support of her family and boyfriend. She advises others living with PAH, ‘it is scary at first, but you need to live your life your own way and never be afraid of what's next.'

In the summer of 2015, Mike started to experience shortness of breath walking to work. Previously, he had enjoyed being active, regularly going for runs. With a misdiagnosis of asthma, his symptoms persisted and Mike began using oxygen therapy to treat overexertion from physical activity. It was not until he admitted himself into A&E, and was transferred to two hospitals in March 2016, did a vascular specialist diagnose Mike with pulmonary hypertension (PH).

Despite finding it more difficult to exercise since his diagnosis, Mike won't let PH dictate his life. Building on a successful career in US politics and government, working for a member of the House of Representatives and President Obama's administration, Mike now holds a busy full-time job in public affairs in the environmental, healthcare and advocacy sectors. Alongside his job, Mike is also a contributing writer to 'BioNews' (an online health news platform) where he has the opportunity to write about his experience living with PH and connect with others. He emphasizes the importance of 'finding something you are passionate about, that you can engage in at a level of comfort'.

Mike is a strong believer in the power of advocacy and stresses the importance of actively seeking information and connecting with your peers by engaging in support groups, either through social media or face-to-face: 'You need to go out, find information, chat with people, join a Facebook group, connect with people who are going through this'. Although it might seem scary to put yourself out there, Mike urges people to always 'encourage hope and reach out' because 'hope comes from storytelling'. Mike's diagnosis with PH motivated him to figure out what he really wants to do. While PH might have closed a door, it has certainly opened a few windows.

Until diagnosis in May 2013, Lane had been asymptomatic; therefore being told that he had pulmonary hypertension (PH) at the age of 24 was a total shock to him and his family. Since then he has 'grabbed PH by the horns', and from the beginning he has taken management of his condition seriously and refused to let PH affect the way he lives.

Lane works at a successful car dealership in South Carolina, and says that although the job can be tiring, as it often requires long hours and weekend shifts, he loves it and wants to work there as long as he can. Lane has disclosed his PH diagnosis with all of his colleagues and although it might not be for everyone, he believes telling his colleagues has been hugely helpful. Lane says because his colleagues know he lives with PH, they understand when he needs to rest and can support and motivate him throughout each day.

Lane is also part of an all men's Facebook group called the Men's PHight Club, which was set up by a PH patient as a private space for men to share their feelings and experiences of living with PH. The group is very active, sharing interesting stories and jokes, whilst supporting each other to live well with PH.

Lane believes that his biggest accomplishment won't be how much money he has made or how far he gets in his job, but instead how well he has handled his diagnosis and managed to support others living with PH. He believes that 'PH may change your schedule, but it doesn't change who you are. Keep your mind set on your goals, as a glimmer of positivity can improve your day, your month, even your year'.

Tegan was initially diagnosed with epilepsy after a series of fainting episodes, which started when she was just five years old. A year later, doctors discovered that her heart was larger than normal after she developed a bad chest infection, and just a few days later she was diagnosed with the rare condition, pulmonary hypertension (PH). This was a huge shock to Tegan’s family who were delivered the devastating news that she would probably not live past 10 years old. When she reached the age of 10 she was placed on the heart and lung transplant list and started treatment immediately. Remarkably this dramatically improved her symptoms, overall health and quality of life. She was able to come off oxygen, was removed from the transplant list and returned to school just six months later.

Now age 29, Tegan’s PH remains well controlled and she works as a clinical nurse consultant in both paediatric and haematological cancers, which she finds incredibly rewarding. She has adapted her life to live with PH, which has enabled her to achieve more than she ever thought possible: "I never thought I would own my own house and now I do".

She loves to travel and completed a solo trip around Europe visiting an impressive 19 countries in 91 days. "I barely packed any clothes as a three-month supply of treatment took up two entire suitcases". She blogged about her trip which reached the online PH community and led to her speaking at the World Congress of Cardiology and Cardiac Surgery in Barcelona in 2017, and in 2019 she represented the Pulmonary Hypertension Network Australia.

Tegan says she now "lives life to the fullest" and has strong relationships with loved ones who have supported her throughout her journey. She is looking forward to her 30th birthday plans and to continue her travels.

Throughout junior school, Haley was a competitive dancer but as time progressed she started to struggle with sporting activities as she experienced shortness of breath. By the time she graduated from secondary school seven years later, Haley was having difficulty climbing stairs and walking long distances. She describes going shopping for her graduation outfit and collapsing, "when I told my dad I couldn’t go to my graduation because I wouldn’t be able to walk across the stage, he realized this was more than just asthma". Haley was diagnosed with pulmonary hypertension (PH) two months later, just after her 18th birthday in 2010. Understandably, this news was difficult to come to terms with and initially Haley felt angry and was in denial. She says this affected her treatment adherence as well as her mental health.

Haley says her life turned around when she moved to New Mexico and attended a specialist PH clinic. She explains how the wonderful staff there took the time to explain the disease and offered more holistic care; "the clinic offers everyone a support worker and counselling as they understand the impact that living with PH can have on all aspects of your health". Haley was diagnosed with post-traumatic stress disorder (PTSD) which was linked to her PH diagnosis. This helped her understand why she was feeling angry and she says made all the difference to her recovery. "They looked at every part of the puzzle and gave me an insight into how my brain was responding. Mental health is not an accessory to healthcare – it dominates your healthcare", says Haley.

Haley’s PH is now well controlled and she has owned her own business selling flowers and artisanal clothing. She also works with students part-time and is a keen artist. She looks forward to starting a Community Health Worker programme at the University of New Mexico where she will work with patients to help improve their care and health equality. In her spare time she writes a blog on living with PH, sharing advice and tips with others living with the condition.

Haley says living with PH meant she adapted her aspirations and now she sees ‘success’ as much broader than achieving a high-powered career. She says it’s important to have hobbies and take time for yourself; "Let go of social expectations, choose something that makes you happy and enables you to focus on your health".

John has always lived an active life; living and working in Brisbane, he spent much of his life working as a funeral director, riding motorcycles and restoring classic cars in his spare time. Three years ago, these everyday activities started to feel harder and harder, as John began feeling breathless and fatigued whilst doing things that he had been doing for many years. He saw a doctor because, in his own words: "I began to feel old."

After over a year and a half of medical tests, John was eventually diagnosed with idiopathic pulmonary arterial hypertension (PAH). The diagnosis made John feel worried and uncertain about his health and this was made worse by the amount of negative and unhelpful information he found online.

Despite this, John tried hard to maintain a positive mindset and began to educate himself about PAH, which gave him the power to not only help himself but also many others. Later this year, John will attend a local PH education day where he hopes to use this as an opportunity to learn more about his own condition and strategies to help other people living with PH.

As well as learning about PH, John has adjusted his lifestyle and hobbies to allow him to continue enjoying his life; where he previously held a pilot’s license and flew planes, he now flies remote controlled planes. He still enjoys the outdoor lifestyle that he grew up with and continues riding motorcycles and bushwalking in his spare time. John says, "Living with PH you have to adjust and enjoy your life for what it is."