Date: Tue, 17 Feb 2009 20:39:00 -0800
From: Nikky Southerland <nikky.southerland@gmail.com>
To: Nikky Southerland <nikky.southerland@gmail.com>
Subject: My ER Fun
My Dearest Friends,
Now that my arms are able to somewhat type without yelling too loudly
regarding the numerous (failed) IV line wounds, I felt it was a good
time to let you know about a health issue which has suddenly and rather
surprisingly come into my life.
At about 9am on Monday the 16th, I noticed that my vision seemed a
little “off” and by noon, I had figured out that if I closed my left
eye, all I saw was a big blurry spot in the middle of my vision on my
right eye–yet peripheral vision and colors were fine otherwise. My left
eye is also totally normal.
I called a consulting nurse with Group Health at around 6:42pm, and
after listening to my concerns, she told me to visit the Capital Hill
Urgent Care Facility that night. After arriving and checking in, it
seems that I first scared the attending doctor because of a faint heart
murmur and the fact it was beating at around 120bpm (so I don’t like
doctors…), and really freaked out the optometrist on call when she saw
what appeared to be a growth on my optic nerve on my right eye.
So at around midnight, they said that they were transferring me via
ambulance to UWMC in the U District, because that facility has much
better scanning and diagnosis equipment, and they felt that the eye
vision issue was one that needed to be dealt with immediately.
I arrived, and was given an “isolation” room that they normally give to
mentally ill patients that are a threat to themselves or others–so
there was just a bed, outside the door locks, a video camera, and no
electrical plugs. :) I guess they were overflowing. The head doctor in
the ER later told us that I was the “most interesting” case of the
shift, for better or for worse.
After a battery of all sorts of fun tests and scans from midnight to
2pm, with all sorts of experts aroused from their beds at 3 in the
morning, they’re still not exactly sure what is on my optic nerve that’s
causing the vision loss. They didn’t see anything bad on the MRI or
scans, so they think it might be other issues (including a thing that
Northern Europeans get). Additional bloodwork comes in on Thursday that
should hopefully resolve the issue. I was discharged from UWMC ER at
around 3:45pm today, and after being up for 33 hours straight, I just
took a nap before writing this.
Just wanted to keep you in the loop. I’ll let you know when I hear
anything more.
Much Love,
Nikky
PS: Feel free to pass this along to anyone you see fit.
==
Date: Thu, 19 Feb 2009 17:26:36 -0800
From: Nikky Southerland <nikky.southerland@gmail.com>
To: Nikky Southerland <nikky.southerland@gmail.com>
Subject: Update
Hey Everyone-
Just a quick update: We went to our follow up appointment today at UWMC,
and after some talks and more looks and tests and such they basically
aren’t sure what it is, but they think that it probably has been
affecting my vision for a while and I was getting used to it (which is
entirely possible), and it was just when I tried using one eye that I
noticed there was an issue.
So my next appointment is on March 3rd, and they’re just waiting for
some final bloodwork to come in before deciding if we know anything new
or not. From there, I guess it’s on to deciding a treatment without
knowing the real cause of the optic nerve obstruction!
In the meantime, I’ll be living life normally, with one eye that’s at
20/15, and one that’s at “erratic” 20/60.
Thanks for your words of support, and I’ll let you know if we find out
anything!
Much Love,
Nikky
==
Begin forwarded message:
Date: Tue, 3 Mar 2009 23:40:57 -0800
From: Nikky S <nikky.southerland@gmail.com>
Hello-
Since I last wrote, we’re still basically at the same
stage–diagnosis. I’ve met with a neurologist who gave me a full
neurological exam and extracted some Cerebrospinal fluid to test for
any signs of inflammation agents or other things which might have
caused the optic nerve to suddenly swell up and obstruct my vision.
The results of that testing was negative–they didn’t find anything
that interesting.
One of the original suspicions was a disease called sarcoidosis, which
is essentially an anti-immune condition which is triggered by unknown
causes and most often will manifest itself in the eyes and lungs.
While the original blood tests didn’t show up any signs for sarcoid,
my primary neuropthamologist decided to go ahead with a chest CT scan
looking for any signs of sarcoid, as the number of conditions that
could cause the optic nerve issue were dwindling due to new test
results. The scan showed normal lymph nodes (a sign of sarcoid), but
did reveal some minor calcification in the lungs, which could also be
a sign of sarcoid.
This calcification could be completely unrelated and due to some
illness I had long ago, but because we want to correctly diagnose the
cause of the swelling before using a spread-spectrum approach on the
eye, I visited a pulminary doctor today. It seems that normally one
has to wait 3-6 months to see him, and I manged to get an appointment
the next day. I had a breath volume/speed/etc. test battery this
morning, and then a bronchoscopy to look at the lungs and get some
tissue samples for testing for sarcoid.
Tomorrow I have an intial injection of gallium for some additional
imaging, some eye tests to see if it’s changing at all, and then a
followup with the pulminary doctor. From there I think we’ll know if I
have sarcoid or not–and it’s totally possible to swing either way at
this point. They’re still admitting that the cause might not be found.
I also met with a cardiologist last week, and I have a slightly leaky
heart valve. They didn’t seem all that concerned, and basically said
it’s somewhat common. So no issues there, as expected.
Thanks for all of your support, I really do appreciate it. If you have
any questions, please don’t hesitate to ask. :)
Oh, and my vision is about the same. The eye doctor said it looked
slightly less inflamed, and I think my vision is slightly better, but
it’s essentially stable in the past fortnight.
Take care,
Nikky
==
Date: Wed, 4 Mar 2009 20:32:58 -0800
From: Nikky S <nikky.southerland@gmail.com>
To: Nikky Southerland <nikky.southerland@gmail.com>
Subject: Even more updates, and a hospital trip!
Hello Everyone-
We’ve been doing some continuing testing and procedures to try and
nail down the cause of inflammation that is interfering with my right
optic nerve and eyesight. The main suspect right now is a condition
called sarcoidosis, which mainly affects the lungs and eyes. So part
of the workup for that requires a CT scan of the chest, which did
reveal some calcification in the lungs. This alone would not cause
great concern to the pulmanologist, but since it might be connected to
the eye, they’re pursuing this with full speed. My primary
neruopthmaologist wants to begin treatment for the eye Monday, no
matter if we figure out what is causing the inflammation. But they
want to be sure that it is or isn’t sarcoid if possible, because the
steroid treatment will most likely eliminate the ways for us to find a
diagnosis. The main treatment for sarcoid would be a steroid regimen.
So in order to try and figure out if this is sarcoid, the only option
left is to obtain a tissue sample from the lungs to see if it’s
something random or sarcoid. This is a general surgery procedure
conducted on an inpatient basis, and I found out this afternoon that
it will occur this Friday at UWMC. As such, I will be at the hospital
overnight Friday night, and perhaps Thursday night as well.
Following that, they are going to go ahead with a (most likely) three
day steroid treatment.
I will let you know when exactly the surgery will take place, and
probably send a status update either tomorrow or Saturday. Maybe
Friday…
If you want to discuss anything, feel free to either call or text my
cell phone, which I will have on me whenever possible. Furthermore, my
parents will be with me Friday and Saturday, and I might be going home
with them until the treatment begins on Monday.
School is kind of on hold right now… we’re preparing a letter to
give to my professors now.
Sincerely,
Nikky Southerland
==
Hey-
Final scheduling for tomorrow is as follows:
At 8:00am I will amble down to the UWMC for my Gallium scan, which
should take up to 90 minutes.
Then I chill until 10:00, when I will meet my parents and sister. At
10:30am I’ll check into the Surgery Pavilion (such an odd name, I
think), and the procedure will begin at around noon, or so I’m told.
It will take around 60-90 minutes, and then I’ll spend the night at
the medical center.
That’s about it really, if you have any questions or want to contact
someone, my father’s cell phone number is xxx, and my
mother’s is xxx. Or you could always call or text me. I’m
sure I’ll be texting after I wake up. :)
—
Nikky
Nikky's Notes 