Wednesday, July 24, 2013

Easy on the Eyes

At the Friends for Life conference this year, Dr. Ben Szirth and a team of eye care specialists from the Institute of Ophthalmology and Visual Science from the New Jersey Medical School provided free retinal screenings for people with type 1 diabetes for the seventh year in a row. But this was my first time being screened at the conference.

I saw quite a few different people who all looked at my eyes at various stations and with various impressive pieces of equipment. It felt a bit like speed dating, going from chair to chair and talking congenially with pleasant strangers.

The first technician performed some basic eye chart style vision checks, having me stand at a distance and read the eye chart covering one eye, then the other. Pretty standard.

The second technician took some pictures of my retinas for the doctor to review. He showed me the photos and explained what he was photographing.

My third station included an autorefractor that I've seen at my usual checkups - you're asked to focus on an image of a hot air balloon while the machine measures your specific vision correction needs.

My next stop was to measure my eye pressure. I believe it's actually called a tonometer, but I have always thought of it in my head as "the air puffer thingy." I've often seen my eye pressure in the borderline high range (normal is 12-22 mm Hg). I'm usually 18, 19, 20. I don't know that I've ever seen above 21. The day of this retinal screening? I was clocking in 24s, 25s. WTH? We measured it again. Same. Hmm. Not pleased.

It had been a rough night. I'd had a pod malfunction that had sent my overnight blood sugar into the 400s. I had taken a correction injection around 3am and decided to deal with changing out the pod the next morning. By breakfast, I was down into the high 200s, and by my retinal screening at 10:20am, I was still floating in the 200s well above my target range.

I was then directed to the machine that measures the thickness of your retina. I've been going to the ophthalmologist for 17 years and I had never encountered this piece of equipment before.
Dr. Ben stood nearby to review the results and explained to me that this was a $50,000 piece of equipment that many of his contemporaries told him was unnecessary to bring to a screening like this...but I am so glad we had it.
My right eye has always been my well-behaved eye. My right eye has always had clearer vision, fewer hemorrhages, lower pressure. But my retinal thickness on the left measured normal (between 250 and 280) and it was my right eye that was cause for concern. 289. Let's check that again. 287. Damn.

So what does that thickness mean? That's what this machine was able to tell us. He studied the image, focusing on the big black bulge in the middle.

Dr. Ben saw the worry on my face. He held my hand. "It's nothing you did. Nothing you did." Still holding my hand. "It's just time and diabetes. We see these changes."

It was one of the best moments I've ever had with a health care practitioner. I want every patient to experience that handhold. I want every patient to hear those words, admonishing them of the guilt that sits like a giant bulge under the surface.

"Have your blood sugars been high today?" he asked. I recounted what my last 8 hours had been like. "Well, that explains what we're seeing here," he said. "The bulge is fluid buildup from your high blood sugar. In about four hours, when you've stabilized, we will see this go away," he explained.

Without this machine and its capabilities, he explained, he would have been worried about my retinal thickness on a more long-term basis. He'd have been worried about degenerating tissue. But not this. This was primarily an acute situation.

"Have you ever noticed that your vision is blurry with a high blood sugar?" he asked. I haven't, actually, but I didn't interrupt. "It's because of this fluid that builds up under the retinal lining."

He went on to explain how critical tight standard deviation is to good retinal health. "The swinging up and down all the time," he said, "this is what we should worry about."

Not the first time I've heard this. Standard deviation. It's all about how tight we keep it. Not the averages. Not the A1cs. But the swings. The roller coaster we call (not so affectionately) the glucocoaster. Physicians report wanting to see standard deviations below 50 for people with diabetes. Mine averages in the 60-80 range and it is my number one goal to bring it down. (My best ever was 18 during my first pregnancy, but that intensity of management was insane and virtually unsustainable.)

The most impressive number I saw in Ed Damiano's presentation on the bionic pancreas was the standard deviation reported in all four instances of adult/adolescent prebolus/no-prebolus - they were all near 20! THIS IS THE FUTURE I DREAM OF.

Dr. Ben took me to the final station where we could review photos of my retinas. My optic nerves are gorgeous. (That's the bright spot with all the healthy looking blood vessels running through it. It means my brain is awesome, from what I understand, but we knew that.) The pinhole hemorrhages my doctor and I had been watching in January and June were all absorbed and healed by my body. Well done, little left eye! Keep on with your bad self!
But there it was again, my right eye behaving in a newly problematic way. Tiny pinhole retinal hemorrhages on the right eye - this time right on the macula where my ophthalmologist said she didn't want to see them.
Zooming in on the macula (the dark red oval area).
I've circled the unwelcome spots.
I told the female doctor reviewing these images with me about my history with these small hemorrhages and how I'd seen them reabsorbed this year, but that it was a growing concern between my regular ophthalmologist and me. She stressed the importance of my wearing sunglasses (I stopped wearing them when I started wearing glasses. The glasses that I started wearing to reduce the obviousness of my vitiligo. Sigh.)

Hubster and Dibbs came back in just as I was finishing up. Dr. Ben's positive energy filled the room as he practically danced behind me, swooning over my beautiful son in the stroller. "I just love to see women with diabetes with babies!" he cooed. He was overjoyed to learn that I had not one, but two. When I told him that I was done having babies, he seemed disappointed. Haha.

It was an amazing experience - the whole screening lasted about half an hour and I never had to be dilated. It was all the positivity of a great ophthalmologist appointment with none of the stress of a waiting room, insurance cards, long waits in a dilation room. I not only had each image explained to me by the doctor, but they emailed the scans to me to keep and use on my blog.

If you're going to Friends for Life 2014, sign up for a slot (they fill up quickly) to have a retinal screening with Dr. Ben and company. And if you're not going to Friends for Life 2014, why not?

Also, because I don't have Rx sunglasses, I will now be sporting the most ridiculous old lady "wearover" sunglasses you've ever seen.

Because I'm too sexy for poor eye health.
These are the medium size. I'd hate to see the LARGE ones.


  1. I just bought a pair of ridiculous green sunglasses to wear over my glasses. You don't necessarily have to go "old lady" when "1980's huge" is in fashion. ;)

    Thanks for sharing this post. I get really awful blurry vision with highs sometimes, so the info was actually pretty neat to see.

  2. WOW. First let me say Im glad your eyes are as beautiful on the inside as the outside despite the tiny pinholes that I hope will be reabsorbed again.
    Second WOW - This>Dr. Ben saw the worry on my face. He held my hand. "It's nothing you did. Nothing you did." Still holding my hand. "It's just time and diabetes. We see these changes." How cool is Dr. Ben.

    My kids always complain about blurry or painful eyes if their sugars get over 400 and it was one of the symptoms that my youngest complained about often before diagnosis.
    The damage caused by glucocoaster worries me so much. My kids can be 400 at one moment- missed bolus/bad site and drop to 150 in an hour after correction. All this scares me. I will need to learn more.

    you are rock'n those glasses!

  3. I love this blog! I wear the "old lady" sunglasses too! You look great in them! Thank you for the info!

  4. I never did the retinal screenings at FFL, but now I know that I should. It's going on the mental checklist for next year. :)

  5. Beautifully written and incredibly detailed and from the heart, Melissa - Thank you for sharing your experience with us!
    I had my own Dr. Ben experience at CWDFFL and found him to be one the kindest and most caring people (let alone a HCP) that I've ever encountered in my life! He talked me down and held my hand.
    Also, you look awesome in those glasses - I got mine at CVS & they almost look as fancypants as yours!
    Kelly K~

  6. I love this post. I am certain that I am not alone in being afraid of getting my eyes checked. I don't want to see the complications and I really fear being checked by a cold insensitive doctor who is quick to blame. I worry that it would tare me down emotionally and derail my really really really hard work.

    Your post brings light to that fear and makes me WANT to get my eyes checked. I want to see cool pictures and understand.

    Thank you for writing this and suggesting a sign up. I certainly will sign up next year.

    <3 awesome, as always Melissa.

  7. I was dx'd by a cold, insensitive doctor, and it made a bad experience worse. I am so glad that you were screened, and that you received this information in a compassionate, empathetic way. Dr. Ben sounds awesome. And you remain awesome. :)

  8. Hmmm..the glucocoaster. Practically unavoidable. Too many variables. I'm dreaming of that bionic pancreas with ya.

  9. Dr Ben is awesome. (I so wish he could be cloned. Sadly, I missed it this year.) And you are awesome, love the sunglasses!

  10. I concur with Dr. Ben's awesomeness! You did a really great job of describing the whole screening. In fact, I'm going to have my husband read this blog because he was not in the room when Ally was screened and you explain it way better than I did! (I will insert Ally's pictures for him though :)