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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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Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer, United Therapeutics Corporation, Acceleron, CVS Health & PhaseBio Pharmaceuticals.

Cheryl Wegener - phaware® interview 307

Jan 31, 2020

We are heartbroken that our friend, Madison Wegener, lost her battle with PH on January 19, 2020. In this episode, Madison 's mother, Cheryl discusses the importance of early diagnosis, the impact PH has on the entire family how journaling became a teaching tool for everyone in their lives.

My name is Cheryl Wegener and I'm a pulmonary hypertension caregiver.

In my opinion, pulmonary hypertension awareness is critical because it means so much to early diagnosis for people like my daughter and others like her. So many times people go so long with misdiagnosis, symptoms that go unchecked, that sort of thing, and so being aware of that just ultimately will save lives.

Day one into our diagnosis, I wish I would've had a better understanding of the disease and what its implications meant for not only my daughter, but for myself, for my son, for our entire family. So tips, as far as going forward, I would definitely say you absolutely have to find a support network, whether it's an online support network, talking with other moms, other parents, other caregivers, friends that are local that get that you might be having a rough time that are there to help you. Absolutely, support is critical.

I wish that the doctor would have approached it more holistically towards our family as opposed to just simply focusing on Madison. That sounds kind of backwards, but making us aware that this is not just going to be her disease, this is going to be your family's disease and this is going to impact every single one of you. And [to] be aware of that and be tuned into that and be self-reflective in that and watch that out with little brother, that sort of thing. I wish we would've had more knowledge and more awareness of that from the beginning.

We have definitely been on a roller coaster on the six years that we've been in the PH club. Sometimes we've responded to it very well and very positively and sometimes our family members, myself included, have not responded to it very well. I think acknowledging that you're human and that you're going to have good days, you're going to have bad days, you're going to have positive I can do this moments and you can have other days where you need somebody else to tell you that you can do this moments.

We've experienced a lot. I've experienced a lot with Madison and watching some social struggles with her at school. I've experienced some struggles in my own relationship dealing with stress, anxiety, depression, and little brother has also experienced a lot of anxiety and depression that I had no idea to look for from the beginning.

My husband and I, from day one of diagnosis, we kind of started journaling about it and that became an open book for us. Our CaringBridge journal became very much a teaching tool for everybody in our lives. We also participate in PH fundraising walks. They expect us to come and to perform well each year. We have a team that's well known now at our local walk.

I teach high school and I'm very open with my students about the fact that you just never know and life is short, and you need to seize the day and you need to appreciate what you have. All of those messages come out, and I'm very open about my own struggles and very open with my daughter's struggles. They are very much #phaware by the time they leave my classroom as well.

My name is Cheryl Wegener, and I'm aware that I'm rare.

Please join the Wegener Family for "Madison's 5K" on May 16 in Dewitt, MI to honor Madison's legacy and making Madison's dream come true by ending the suffering of these PH kids and finding a cure.  You can also read more about Madison on her CaringBridge page. 

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials