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