My name is Monica Wells. I am 30 years old (as of just a few weeks ago). I was born with Transposition of The Great Arteries (TGA), one of hundreds of forms of Congenital Heart Defects (CHD). I am a survivor and so much more as I hope this blog will show.
I am writing to be blunt and I hope that is ok with you. In the next 5-10 years I will almost certainly be a candidate for a heart transplant. Something I narrowly avoided at the start of this year. Those are all stories for another time.
I'd like to start with something my mother and I wrote together. Something meant to be the start of a book I still intend to write. I hope it serves as a jumping off point as we get to know one and other. This story takes place almost 15 years ago at a time when it was becoming clear that I would once again need medical intervention to deal with my chronic illness. Thanks for reading.
Monica
The
Appointment
As told Monica Wells, 30 year old TGA
survivor.
I’m fifteen years old, sitting on a table that is
covered by a thin sheet of white paper, supposedly a barrier between me and
whatever sickness the person who last sat here might have left for me. It
is cold and hard. The paper crinkles and shifts with every movement pointing
out that I am fidgeting without the need to see that I am. Finally I jump
off the table careful to keep the gown I am wearing closed, trying to maintain
at least a semblance of modesty. Whoever designed these things didn’t do so in
the hope that anyone would feel better while wearing it. The material is a dull
green with darker green trim, blue dots cover it and all it says to me is
you’re sick. If I wasn’t sick I wouldn’t be wearing this god-awful
looking thing, freezing on this cold table in the first place.
The doctor comes in and I see his lips moving, I
hear his voice filling the room but I have no idea what he’s said after he has
gone. I don’t know if it is because I don’t understand what he is saying, or
because I don’t want to. Either way I am in no rush to be filled in about it.
I’ve heard it all before anyway. Every time it is the same thing. Nothing is
ever conclusive, there are always more tests to be run, more procedures to be
done, and then we’ll know more. I wonder what more there could possibly be to
know. How there could possibly be another test that would tell them something
more than the hundred that came before it.
The drive home with mom will include the usual pep
talk, and I will let her give it. By now I have learned that it is as
much for her as it is for me. It’s the usual, “It will be all right, we’ve been
through this before, you’ll be fine, and we’ll be fine.” In a way it
makes me feel better. At least the talks don’t change. But the talks
don’t change because nothing has changed. Here we are in the same old place,
having the same old talk, after the same old appointment, telling us the same
old thing.
The Appointment
As told by Pam Bryan, mother of
Monica a 30 year old TGA survivor.
I am tired after our long drive but anticipation
keeps me on the edge of my seat. This exam room is not so bad as I
actually have room to sit my purse down on the floor and am not squeezed in
among the medical equipment and file cabinets like in some places we have
been.
I bite my lip as I watch my daughter
squirming on the exam table unable to sit still. I wonder to myself how
much she knows about her condition and almost hope that she doesn’t know that
much. Sooner than we both want she will be out on her own and she will
need to know it all - the good and the bad – but for now I just want her to be
a kid and to be as normal as her heart will let her be. The rest can wait
until she is older.
I try to swallow the lump in my throat as I
hear the knock on the door and the doctor enters the room. I hang on
every word and struggle to remember the meaning of all the medical terms he is
using. I have read everything I can get my hands on about Transposition of the
Great Arteries starting 15 years ago when she was born and still it is not easy
to translate what he is saying. I get out the list of questions I have
tucked in my purse and ask them all, but the question that is always on my mind
will remain unasked. How long? What is the survival rate of patients with
TGA? To even ask the question is to admit that “it” could happen and I am
not ready to admit that today.
On the ride home I talk to her about all the things
the doctor told us. I give her my best pep talk and convince her and
myself that everything is good and that she will be fine. Yes, we made
plans for more of the same tests and yet another procedure but that is somehow
soothing to me. There are still things to be done and we will do them…she will
do them, and we will move forward.
With all the heart-talk out of the way and the
distance between us and the doctors and the hospital growing, we turn up the
radio and she makes me laugh playing “Name that Tune” and we begin transforming
into a “normal” mom and her “normal” daughter on a road-trip back home to
Kansas.
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