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Macular Edema and Pac-Man.

I had been sitting in the darkened waiting room where people sit patiently, waiting for the dilation drops to take effect on their eyeballs.  The room is quiet and dim, with a television set at the front and chairs for people to ease into and watch the DVD menu screen (it was for a Discovery channel documentary about deep sea life – we watched the DVD menu load and reload a dozen different times, until I couldn’t take it anymore and asked a passing receptionist for help finding the remote).  Most people wait alone, holding their jackets and scarves and not making much small talk.  The folks who don’t wait alone are those who need assistance due to compromised vision, or other health issues that make movement difficult.  It scared me to see those people who, for whatever host of variables, were dealing with eye issues.

Dilated diabetic eyeball.  Oh yeah, this eyeball has its very own diabetes.

I thought about my daughter’s face, grateful it was clear in my mind and through my eyes.

For as long as I can remember, Joslin never scared me.  But the eye clinic always did, because it seemed like once you were a patient there, you are never released.

My eye doctor came out to retrieve me, and we briefly discussed my visit a few months ago, where the macular edema was diagnosed.  He pulled up my scans from the summer on my computer.  When I first saw those scans of my swollen, lipid-dotted retina, it reminded me of Pac-Man.  Or a  bunch of white Christmas lights along a gray, licorice-esque rope.   If it hadn’t been my diseased retina, it would have been almost pretty.

“That’s the scan from the summer, and this is the one from now,” my eye doctor said, pulling up the scans taken a few minutes earlier.  It looked as though Pac-Man came through to gobble up the majority of the dots.

“That one there?  The big one?”  He pointed to the screen, edging his fingertip against a larger, round smudge on my retinal scan, then pulled up the correlating scan from over the summer.  “That’s what it used to look like.  And now it’s still there, but much smaller.  I’m hoping to see it shrink more, but we can’t ever be too sure.”

The swelling is very minimal, but still there.  The lipid deposits are also still there, but fewer in number and smaller in size.  “Is this better?  It’s not gone, but better, right?”

“It’s better.  This is encouraging progress, but it could go either way in the future, so I still want to monitor it closely.”

I remembered what the technician had said before putting the drops in my eyes – “Your doctor is really good.  He knows exactly what to look for and how to react to it.  You are in good hands.  But he’s kind of all business.”

The eye doctor turned his chair around to face the computer again.  “I do think we can ease back on the scheduling, and do every six months instead of three,” he said.  “You’re off the immediate ‘watch list.’  Let’s schedule another exam for June, and in the meantime, keep doing what you’re doing.”

I was released to the too-bright regular waiting room, where Chris was sitting and waiting to drive us both home.

And I felt relieved, relieved, relieved and even more determined, determined, determined.

27 Comments Post a comment
  1. AbbyBayer #

    :)

    12/30/13; 9:59 am
  2. Having been in that same chair, with that same anxiety, I am so happy to hear your situation has improved. I too have been released to the 6 month visit schedule and couldn’t be happier. I’ve learned from my experience that early detection really is key, no matter how cliche that sounds. My hope for you is that things stay better. Hugs to you Kerri <3

    12/30/13; 10:07 am
    • YES. Early detection!! This is why I wanted to write about this, and am glad that you wrote about yours, too. People need to be shown that early detection isn’t failure, but instead is the best option we have to staying as healthy as possible. xoxo

      12/30/13; 10:09 am
  3. Kim #

    This makes me so happy for you. :)

    12/30/13; 10:09 am
  4. Congratulations on getting off of the immediate watch list!

    12/30/13; 10:44 am
  5. Jennifer #

    This made me cry, I’m so glad it’s better.

    12/30/13; 10:56 am
  6. Lynn H. #

    Go you! Thank you for writing with equal amounts of humor and grace and for sharing your experiences with all of us. Your blog introduced me to the DOC and to a lot of other awesome people who just “get it.”

    12/30/13; 11:06 am
  7. Nell #

    That is encouraging news Kerri.

    12/30/13; 11:22 am
  8. Heidi #

    Made me cry, too. Happy for you, and know the feelings of fear and hope you were feeling. Glad you got good news, and can appreciate how hard you worked for it. Congratulations :)

    12/30/13; 11:59 am
  9. Denise Lee #

    Kerri–
    I was thrilled to see this good news from you today! I will continue to pray it keeps going in the right direction.
    Do they have you on any additional supplements or Rx’s for it? Or is keeping the blood glucose as low as possible the only “treatment?”
    You are amazing!

    12/30/13; 12:22 pm
    • It seems that it was a combination of tight control, exercising regularly (improving circulation), and dumb luck. I’ll take it.

      12/30/13; 12:48 pm
  10. Katie S #

    Congrats Kerri! This is wonderful news!

    12/30/13; 12:34 pm
  11. Michelle S. #

    I am THRILLED to hear this good news. Tears in my eyes at your closing words…. “Determined, determined, determined”. I just had a brutal 24 hours (due to technical issues i think) but i am back on track and will use that mantra. xox

    12/30/13; 12:43 pm
  12. Kendra #

    Great news, Kerri! You’re doing what you need to do, and I’m really happy for you. :) I appreciate your willingness to talk about this.

    I’m sharing this experience with you on a very personal level…. (and just read your “complicated” July post). Man, I wish I knew about you and the DOC when I started going through the experience of macular edema 18 months ago!

    12/30/13; 1:15 pm
  13. Through those eyes we share the world as you see it. May they stay as beautifully clear(er) as your doctor has reported. Best of everything moving forward. The world, oh so needs, those beautiful eyes. Much in our thoughts and continued prayers.

    12/30/13; 1:22 pm
  14. deborah menke #

    Glad to hear..stay strong

    12/30/13; 1:52 pm
  15. Very, very happy that this visit went so well. Also, may I say that I’m proud of you for going, and for being so determined. You’re setting an awesome example, as usual.

    12/30/13; 3:00 pm
  16. I hate it when those minutes of waiting seem like HOURS.
    I’ve had macular edema for years. It comes and goes. But getting yourself the best possible doctor is the absolute key. This guy sounds like a winner.
    PS – So sorry I didn’t get to meet you when you were in town, but the location was impossible for me to get to via bus.

    12/30/13; 7:43 pm
    • Laddie #

      Minnesota Nice, next time contact me. I could pick you up so you won’t have to miss such an event. I was so excited to get to meet Kerri at the JDRF Reach and Teach and she didn’t disappoint:-)

      Kerri, I’m so glad that you had a good appointment with visible improvement in your eyes.

      12/30/13; 8:03 pm
    • I really wish we had the chance to meet this year, Kathy. I feel like it’s been long overdue, that moment. But hopefully I’ll be out your way again, and am happy to meet you somewhere convenient! (Maybe Scott will join us!) :)

      12/30/13; 9:05 pm
  17. Taylor #

    Great news!!! Congrats :)

    12/30/13; 8:39 pm
  18. Great news!! When I saw your pic on Instagram yesterday then there wasn’t an update, I was afraid it was bad news. I’m so happy it’s improving!!

    12/30/13; 8:45 pm
  19. pam #

    sooooo encouraging, kerri!!! i am so happy for you <3

    12/30/13; 9:15 pm
  20. Wonderful news Kerri. I definitely hope that it continues in that direction.
    I’ve spent many hours waiting at different eye clinics to learn my news and understand how hard it is to wait.

    12/30/13; 11:52 pm
  21. That’s excellent news Kerri good for you.

    I hate that particular waiting room, it always seems like an eternity and there’s not a lot to do when your eyes are dilated. Maybe they could give us Play-Doh (r)!

    01/2/14; 4:30 pm

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