June 26, 2017

Bridget’s story – Kartagener Syndrome and Pulmonary Arterial Hypertension

My name is Bridget Doyle, I am 21 years old and I live in Brisbane, Queensland with my mum, dad and my dog, Hope. I have two lung conditions Kartagener Syndrome and Pulmonary Arterial Hypertension (PAH).

I was diagnosed with Kartagener Syndrome at 3 months old. It is a genetic disorder which I have dealt with a lot growing up as I got bullied in school for having a runny nose.

The journey to my diagnosis of PAH was six months after I first started getting symptoms but because of Kartagener Syndrome the doctors thought it was that or I was a bit unfit. In the October 2011, I was in The Wesley Hospital for a chest infection but I stayed in a few more days because we couldn’t get my oxygen saturations above 82%.

In the January 2012, I was at a Heart Teens Camp for my congenital heart defect and it was a big campus so I got breathless walking long distances and I couldn’t walk up the stairs without stopping half way up because I would get too breathless. I was also sleeping more, had less energy and was more breathless than I had been before.

In May 2012, at 16 years old I was diagnosed with Pulmonary Arterial Hypertension (PAH). My cardiologist at the time was asked to review me by my respiratory specialists, as my oxygen saturations where not returning to my normal level following two admissions for respiratory infections.  After many tests (including an echocardiogram, MRI and Chest CT) I was referred to the Mater Children’s Hospital where I had another echo and then I was booked in for another series of tests (Left and Right Heart Cather, Transoesophageal Echocardiogram, Nitric Oxide Challenge and Bubble Study). I stayed at the Mater for 10 days because I went into heart failure. When I was stable I got transferred to The Prince Charles Hospital.

At first when I was diagnosed I didn’t understand the diagnosis and what it meant for me. I just thought it was another condition that I would have to deal with. I was so angry at one stage I pushed a chair against a wall. I was scared because I didn’t know what was happening. When I was diagnosed mum wanted to find out more information and she was sad because she told me I couldn’t have kids and she cried.

My treatment has changed a little bit throughout my five-year fight. When my treatment started I was on a smaller dose of three different medications, this has since increased to larger dosages and more medication. Along with a long list of daily medication, I also deal with pain and daily symptoms. Some of the side effects of the medications are weight gain, nausea and vomiting, pain and feeling and looking flushed. Treatment and medication has had an impact on my life because I need to think of where am I going and do I need to take my medication with me because I am out at the certain time I need to take my medication.

I also have to do physio twice daily to get the mucus out of my lungs because it doesn’t move otherwise. I cannot walk long distances on the flat and I cannot walk upstairs or inclines because I become very short of breath and become cyanotic. I am unable to work because of the impact of the symptoms of Pulmonary Hypertension.

Positive impact it has been my condition is being managed with the medication, if not my prognosis would have been two years. My parents and I are closer. I have met some life-long friends with pulmonary hypertension. My advice to someone who is newly diagnosed with Pulmonary Hypertension is to take it one day at a time. Manage symptoms with medications. Everyone with pulmonary hypertension is different so don’t compare yourself to someone else. My motto is Keep Phighting, every day is a mew day.

I have been inspired by Turia Pitt because she keeps going in the face of adversity and never gives up. Kylie Corkery because she keeps going raises two kids even though she has Pulmonary Hypertension. My mum because she does everything to help me. Tries to do everything herself.

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