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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Kristine Ritchie - phaware® interview 210

Nov 27, 2018

Pediatric PH caregiver Kristine Ritchie discusses her son Brendan’s pulmonary hypertension diagnosis.  Kristine talks about the importance of advocating for her child, the power of online support groups and struggle of navigating a new normal.

My name is Kristine Ritchie, I am from the Central Interior of BC in West Kelowna. I am the parent of an idiopathic pulmonary hypertension child who is 10 years old, and he was diagnosed at four and a half years old on December 12th of 2012.

Brendan has always been a small child and we thought that was pretty normal. One day we decided to go for a walk in November, just up the road from our house. It wasn't a strenuous walk and it was probably about 10 o'clock in the morning.  We walked across the street and probably about 500 meters up the path. Brendan said to his dad, "Daddy I'm tired." He let out a whimper and then he fell to the ground. He basically had a seizure. His eyes rolled back in his head, he couldn't talk, he didn't really know where he was. That started our journey.

We took him to our local hospital, Kelowna General Hospital and we waited for the pediatrician on call, because he wanted to come check him out. About two, two and a half weeks later, we had an echocardiogram and we got the results that he had pulmonary hypertension. We were flown down to Vancouver two days later and we stayed at BC Children's for nine days with a myriad of tests and now we actually travel from Kelowna to Edmonton to his PH specialist.

With the medication, they knew what they wanted to start him on. He started on sildenafil and because he was only four and a half years old, he didn't know how to swallow any pills. We were able to compound it. However, our insurance companies would not cover the medication due to the type of medication that it was. Our insurance company wouldn't cover erectile dysfunction drugs, so they refused the medication for him. It took three months basically of full-time letter writing and advocacy and fighting to get the medication covered from our insurance.

Basically, I was reaching out to anyone. I wanted to do anything I could for my child. When he was first diagnosed in Kelowna the pediatrician said, "Don't google pulmonary hypertension." The first thing I did that night after all the lights had gone off was google pulmonary hypertension. I figured out what it was and I just sat in the hospital room just not knowing what to do.

When we went to Vancouver, we had a great medical team and I'll [always] remember Dr. Sanatani. Although we don't get followed by him anymore, I will always remember he said that if I didn't advocate for my son, no one else would and I've remember that phrase for the last almost six years.

So I wrote letters to insurance, I wrote letters to my human resources. In the past six years I've had write letters throughout a myriad of circumstances to various levels within our school, our school district, our school board, the Minister of Education for BC. Just for help on so many different things that it has at some points been more than a full-time job advocating for my child.

My saving grace basically is a Facebook group: (Families of children with Pulmonary Hypertension). In the Central Okanagan, the Interior, there aren't hardly any other families that have children with pulmonary hypertension. Social media has been a great resource for me. I know not everyone is into social media, but the amount of people that you can connect with and everyone has a story, and everyone has been so uplifting and always there. Because it's all over the world, if you ask a question in the middle of the night, someone is going to be awake somewhere to help you answer your question and be a support for you. I feel like social media has been second to none for a caregiver such as myself.

Then also trying to get involved to your comfort level. Going and meeting other people. Reaching out to not only meet them, but listening to other people's stories and learning from other people, because so many people have traveled this road before us. If you can ask questions and follow the advice of others and the stories and the situations that others have been through, I think that it empowers you as a parent. If you're a patient and you find the patient support groups, then that I can empower you as a patient as well.

A lot of people say that it's creating a new normal and at the beginning there's so much going on, but just knowing that a new normal will eventually come down the road, sometimes it might take a few months. Right now, we are adjusting to the life of a subcutaneous pump, so still learning how to see my son attached to tubing and attached to a pump is still not quite normal yet. I know it's going to get there, but that's my biggest thing is a new normal will come, just give yourself time to adjust to everything that's going on.

Kids are incredibly resilient and resourceful. My son has barely complained even after a site change when sometimes he can't feed himself or do up his seat belt or he needs help getting dressed. He doesn't complain. We did have to work on him getting wet and into a pool, so just watching him be so proud of himself and take ownership and helping him advocate for himself. I think we can learn a lot from kids just watching them and how happy they are and how adaptive they are to everything.

Probably the only other thing that I would add, if I can do a broad spectrum… I think for kids, (because of course I have a pediatric PH patient), getting kids to meet other kids like themselves. Going to the Painted Turtle Camp if you can, talking to other people in Clinic Day because a lot of them are there for the same reason you are. Brendan thrives on meeting other kids and knowing their names and what have they got and it really helped him being able to see other children on a pump before him or seeing what they can do. Now he can share that he still goes tubing behind a boat, he goes golfing, he plays baseball and all of this is with an IV in his arm and a pump around his stomach.

I'm Kristine Ritchie and I'm aware that I'm rare.

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