PH Profiles: Tegan

November is Pulmonary Hypertension (PH) Awareness Month. In honor of PH Awareness Month, I will be sharing patient profiles about special members of the PH community. Please be sure to visit throughout the month of November to read more PH profiles.

Tegan Dunmall was diagnosed with idiopathic pulmonary arterial hypertension in her early childhood. She is now 28 and resides in Melbourne, Australia.

At the time of her diagnosis nearly 23 years ago, Tegan’s heart was severely enlarged. Her heart was described as the size of an adult male athlete’s in the chest of a 6-year-old girl. Although the classification system has changed since her diagnosis, Tegan says she was diagnosed at the equivalent of WHO classification stage 4. She was given a five-year life expectancy, something she was blissfully unaware of as a child.

She initially started taking medications like diltizem, as not many medications were available for PH at the time. Tegan’s health declined rapidly in the five years following her diagnosis. That decline eventually led to complete right-sided heart failure, and she was entering kidney and liver failure as well.

Tegan was placed on the transplant list in hopes of receiving a heart and double-lung transplant. She became too ill to attend school, and she required the use of a wheelchair, oxygen, and many medications. Tegan was also placed in palliative care, although she was not aware of this at the time.

In early 2001, Tegan was placed on epoprostenol, which she uses today. Within weeks, her symptoms began to resolve and she was removed from the transplant waiting list when she became too well to qualify for a transplant. She no longer required palliative care and was able to slowly return to school.

Upon diagnosis, Tegan was discouraged from a few activities and was told she would not be able to travel. Tegan travels internationally about twice per year and takes interstate trips as well. So far, she has traveled to more than 20 countries.

Tegan in Wales.

She also works as a full-time pediatric cancer nurse, something she says seemed “outside the realm of possibility.” Tegan lives independently and does her best to look after herself. But she knows her limits and has a nice bed at her mum’s house on those days where she may need a little extra help (or TLC).

About advice she would have given herself when first diagnosed, Tegan says, “Listen to the PH healthcare team. They know the statistics, the likely outcomes, and they know what is necessary. They won’t suggest things lightly. This is their job. They want what is best for you. “

Although living with PH is hard, Tegan says, “My life is AMAZINGLY better than upon diagnosis. Medicine has come so far. There was nothing available back in 1996 in Australia. On diagnosis I was scared, unable to participate in any school activities and felt very different to my peers. My family and friends are the only reason I am the person I am today. They provided support like no other. I don’t think the feeling has changed; it is still scary, it is still as uncertain, but I am more able to make decisions and take care of my own self, with the support of my family and friends.”

It took some time, but Tegan has come to terms with her illness. Although PH may be part of her identity, it is not something that she will left define her. Tegan feels the key to her success has been medication, support from close family and friends, and trying to face everything with a positive attitude and a smile.

You can learn more about Tegan by watching the short clip below that she created for Lung Foundation Australia. In the video clip, she discusses some of the stigmas she has faced as someone living with a lung disease.

You can follow Tegan on her Tumblr, where she blogs about living and traveling with PH, and on Instagram.

***

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.