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I'm Aware That I'm Rare: the phaware® podcast

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Robyn Doyle Transcript

Apr 21, 2017

Robyn Doyle is a full-time Caregiver to her daughter Bridget. She shares her PH story from Australia. Robyn shares why she’d like to be able to interact more with people who have children with PH.  

My name is Robyn Doyle and I'm from Redcliffe, which is just north of Brisbane, Queensland, Australia.

My daughter was diagnosed at 16 with pulmonary arterial hypertension, and they've deducted that it was caused by her congenital heart disorder that she was born with. Sort of had a bit of a rocky life from day one, until this present time. Had a lot of ups and downs during that time. She has also other comorbidities as well, she born with another genetic condition as well, so that impacts on her pulmonary hypertension, as well. She has a rare condition called Kartagener Syndrome and that where the cilia in the lungs don't work properly. She gets treated the same as the cystic fibrosis, as in the lung component but not the digestion part. Obviously she's prone to a lot of respiratory infections, so when she gets a respiratory infection that increases the pressures in her lungs.

Yeah, so we've had quite a rocky life. She's always been somebody who needed care, sort of monitored and this is the first time I've been away for more than two nights. I've only ever had two nights away from her in 20 years. My husband's there looking after her, and her father, there's also her father. When she's good, it's okay, but when she's not well - she can't bend over to pick things up, she will need help with her showering, getting undressed. She has a problem with vomiting, with breathlessness, more than normal. She has a little dog because if she's unwell she can't take it out. Hope, the dogs name's Hope. It's that type of thing, so just with meals, helping with meals, yeah, it's a lot of extra care. She started university but only lasted a week because she had too many admissions in that year, so it just got too much for her.

She has a small group of very dedicated friends, but it makes it very hard socially for her, as well. Being socially isolated, not being able to do what other people of her age do. I've only recently joined Pulmonary Hypertension Western Australia, it's about, if I want to fly there it's about a six hour flight from Brisbane to Perth. Something that we may go there next year to catch up with the group, because I've a sister that lives there as well. I found that PH Western Australia is very professional, dynamic, inclusive, and only been going for a short period of time. It's amazing what they've now, with this patient directed pack, it's the first one in Australia that's just for patients. It's got a lot of different things that's included in the pack for patients, and for patients to give to health care workers that don't anything about pulmonary hypertension - like ambulance officers. When you got to a regional hospital that doesn't know anything about PH or the drugs, so yeah that's just amazing. 

They've got a large group of different people in different areas they're working on, so it's not just two people doing the work, it's quite a good bunch of people. I'm very excited about hopefully going there next year and actually meeting people face to face.

The populations 24 million in Australia, but obviously a lot less in Western Australia and where I come from Queensland, so face to face support groups are very hard to get going. We have a little group at the Prince Charles hospital where my daughter goes to, but unfortunately it's only got about 15 people, or something, with carers that's total that come at the most on one session. A few years ago unfortunately we lost about three people, died, and somebody had a double lung transplant. Yeah, we don't have the population that they do in here in America to actually get ... Its really much better if you can actually talk to people face to face than on Facebook. 

I'd like to be able to interact more with people who have got children, well she is an adult now, but at that same age. That's what I find I really lack, is sort of having that. I have got a couple of friends, but it's nice to have a group that's just for young people, also. Even though my daughter does go to a support group for heart teens, and young adults, but they only sort of meet every couple of times a year. It's hard, it's hard for her as well.

Good day, I'm Robyn Doyle and I know that my daughter is really rare, because with pulmonary arterial hypertension, only at 20 it's a bit of a life changing experience for her. Okay, thank you.

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