Matt has always been active and seemingly healthy. In high
school, before he and I met, he was the Golden Boy basketball star — a tall,
handsome drink of water with a bright future ahead of him. He and I met as transfer
students in college; we met, fell in love, and soon started a family. We were
young. We struggled. Eventually we divorced and started the custody and
schedule juggle of our two young children. Fast-forward a handful of years,
another child, and reconciliation attempt followed by yet another separation, and
I got the call. As in, The Call.
It came from one of Matt’s best friends. I knew Matt had
gotten a horrible headache two days prior; this was odd in that he simply never
got headaches and this one was awful. Our oldest son, Loren had encouraged him
to seek medical help, but Matt thought he could ride it out. Matt and his friend
had been watching a football game when he collapsed into a seizure and was
taken to the hospital. His friend told me Matt had suffered a stroke, that I
should come before they airlifted him to Denver where he could be better
attended.
We live in the Colorado Rockies where weather is
unpredictable. Matt should have been taken to Denver to a hospital that
specializes in strokes and related issues, instead he was taken by ambulance to
a different hospital where he spent a couple of days in ICU and then an
additional eight days on a regular floor. The doctors were stumped. His kidneys
were acting weird from the moment he was admitted, his vertebral artery had
dissected and his carotid arteries were also abnormal. To add to all of it,
Matt’s blood pressure was through the roof and it seemed no combination of
medications was enough to lower it. Two days before he was released the doctors
diagnosed Matt with FMD, they had never seen such a case and read to us from
notes printed from the Internet. They tried to perform an angioplasty on Matt’s
left kidney, but the complications were too much for the staff and so they left
it.
Matt has been home for over a year now. Life is different.
We are again a family under one roof. Our children, 18, 14 and 7, understand
that their father is different now. After a half day of work he is beyond
tired. We no longer head to the ski mountain for a full day. Instead we might
hit a couple of runs before heading to a local hot springs pool where Matt can
relax and the kids can play. Our life is much more quiet now.
I can’t pretend to know the frustrations of having FMD — the
exhaustion, the anger that must come from being 40 years old and not able to
participate in a life that was previously well within reach. I can only watch
and try to catch the fall if it’s a bad day. I can make sure Matt has his
medications, a decent breakfast, a quiet place to rest in the afternoons.
Unfortunately, due to some insurance issues, we have not been able to get Matt
all of the follow up care he requires. He needs a specialist, or a team of
specialists, to discover if the FMD is in other areas of his body. When he was
in the hospital they only looked at his carotid and renal arteries. From
research of his symptoms we suspect other areas are also affected.
FMD is frustrating. It is not a black and white issue. There
is no set of numbers that tells us how extreme it is. Instead it is sort of a
gray fog that infiltrates our lives, some days enveloping us and choking the
joy, other days quietly waiting at the edges. There are good days, fun days,
laughter. There is an appreciation that life can still be lived on different
terms with different expectations. I have no idea what the future holds for
Matt and his health. I have hope and I have a vision where he will get the
medical attention he needs and we will better understand what is going on in
his body. I am grateful for this chance to try again, and while it’s not always
easy, it is never boring.
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