SICKLE CELL
“Could you tell me about your hematologist?”
“Dr. Glisson? Great doctor. He’s open minded. Ever since I started
this new treatment with him, I haven’t been in the hospital near
as much.”
“What new treatment did you start?”
“I get a blood apheresis done every eight weeks. I have eight units
of sickle cell blood taken out and eight units of new blood put in
my body. I started the treatment about a year and a half ago. It was
a huge change for me, because prior to that, I was staying sick a lot.
Seeing a hematologist really changed my life.”
“Have you encountered the stigma of doctors being averse to giving you
pain medication?”
“Oh, for sure. It’s a big stigma. Doctors don’t want to give us pain
medication, because they think we’re addicts. I don’t have that
problem but, if you look at me, you don’t realize the type of pain
I’m in. Many doctors judge based on looks alone.
I went to my doctor today. They know that I ache. I’ve had this
medical pump for a few years now to keep me from going to the
ER. It made a difference in my life. Before that, my life had been
staying in the hospital. I’d say a third of my life has been spent in
hospitals. People like us really need pain medication. We might
look healthy, but we’re in pain.
When our blood cells start to break down and our white cells
die, our veins get clogged up. We get jaundiced. We swell and ache
all over. To have doctors telling us we’re addicted to the pain med-
ication, it’s really difficult to hear.”
“Can you describe your pain pump? What does it do for you?”
“Sure, I have a pain pump in the left side of my abdomen under
my skin. It wraps around me, up under my side. The pump goes to
the vertebrae in my back and injects pain medicine into my spinal
fluid where it won’t affect my organs. I’m getting a real low dose of
hydromorphone through that pump.
This is my third pain pump. The first one, the battery was starting
to die. The second one had a longer battery that lasted a lifetime,
but then a new one with a bigger reservoir was made. It holds more
medication. I go back every three weeks to get a refill once the
medicine loses potency.”
“How has your Sickle Cell Disease support group helped you relate to
others?”
“I try to build a lot of relationships there. A lot of people in the
group can relate because they’re going through the same thing as
I am. Sickle Cell affects wellbeing. But, there’s also depression. It
takes a toll on you to be sick all the time.
The good thing about this is that I know myself. It’s just a part of
my life, and I’ve grown along with this struggle. I’ve never known
anything else.”
Aaron Burch is the communications specialist and interviewer for the
Greater Louisville Medical Society.
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SEPTEMBER 2018
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