Diabetic Retinopathy – Part 1

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I went 21 years “complication-free” from diabetes.  Sure, I had a few issues pop up from time to time, but never any of the hot buzz words that go along with diabetes like diabetic neuropathy, diabetic nephropathy or diabetic retinopathy.  However two months ago, I found out I could no longer say I was complication-free.

It’s taken me a little while to write about it, mainly because it happened near Diabetes Blog Week and because I was really upset about it for a while.  Every year I would get my eye exam and my eyes were always perfect.  I loved hearing the doctor say that my eyes didn’t have diabetic retinopathy.  I always felt proud because it was a reflection of my good care that wasn’t tied to a number, or so I thought.

On a Wednesday afternoon back in April, I was sitting outside reading a book when I noticed a blurry spot in my right eye.  It was a small spot in the center of my vision.  At first, I didn’t worry.  I thought it was like the “floaters” I see in my eyes from time to time, thinking that something about reading outside in the bright sunlight was playing a trick on me.  As I continued to read, it didn’t get better.

An example of what my right eye sees

An example of what my right eye sees

I mentioned what was happening to my husband and he told me to make an eye doctor appointment right away, reassuring me that it probably wasn’t a big deal but it would be good to check it out.  He didn’t let me know how worried he was.  I tried Googling “blurry spot in vision” but nothing came up besides results on getting eyeglasses.  My husband had Googled blurry vision with diabetes and got a much different search result.

I called my doctor and they could fit me in that Friday at 3PM.  Prior to the appointment, my husband let slip how serious he thought my eye issue could be and offered to go with me to the appointment, but I was stubborn and thought I could handle it on my own.

I arrived at the appointment and after waiting what seemed like an extraordinarily long time, they finally took me to the examining room.  I told the nurse what I had noticed, she did some vision checks-reading what letter I thought I saw, pointing on a grid where my blurry vision was, etc. She then asked if I was breastfeeding, which I was, and told me that the doctor might not want to dilate my eyes because there have been no tests done on the effect of the dilation medicine on breastmilk (another story I’ll tell later).

After relaying the information on my eyes to the doctor, she came back and said that it didn’t matter what the effect on breastmilk was, we were going to dilate my eyes.  This was my first indication that maybe my blurry vision wasn’t so normal.  My eyes were dilated and then I waited another 30 minutes.

Finally, the doctor came to check my eyes.  He had an assistant in the room writing down what the doctor saw.  All started out fine-the doctor relayed some OK sounding terms to the assistant, then next thing I know he was saying some scary words like diabetic retinopathy, proliferative, macular edema, and hemorrhaging in BOTH eyes, not just my right eye.  When he finished his examination, he had completely freaked me out.

I told him none of those words sounded good and he said they weren’t.  He told me to make a doctor appointment with the retinal specialist as soon as possible.  He had wanted me to go that same day but because I had a 3PM appointment and I waited so look for the exam to be completed that it was almost 5PM and the office was closing, so I had my appointment scheduled for the following Tuesday. He told me that the retinal specialist would inspect my eyes but most likely I would need laser surgery and the sooner he did, it the better.

I left my appointment really upset, wishing my husband had gone with me to the appointment, and I had 4 full days to work myself into quite the panic.  Because I didn’t know much about eye issues, I spent a lot of time with Google and the Diabetes Online Community.  I am so thankful for the DOC because I reached out via Twitter and Facebook groups and so many people helped put me at ease because they had been through something similar. Many people shared their experiences with me and it turned out many of those people are doing fine now with their eyes, despite having been diagnosed with certain issues in the past.

I learned a lot about eye issues relating to diabetes.  The main complication is diabetic retinopathy, which is caused by changes in the blood vessels of the retina. There are four stages:

1. Mild non-proliferative retinopathy
2. Moderate non-proliferative retinopathy
3. Severe non-proliferative retinopathy
4. Proliferative retinopathy

Basically, the non-proliferative forms are when microaneurysms (swelling in the blood vessels) occur which can cause some of the blood vessels that supply the retina with blood to be blocked.  As the condition progresses from mild to severe, more vessels are being blocked which causes a signal to be sent to your body to grow more, which leads to the proliferative retinopathy stage.  The new blood vessels are fragile, causing leakage which can lead to vision loss and blindness.

A person can often go without noticing that they are at any stage because there often aren’t any symptoms.  The fact that I had blurry vision in my right eye was enough of a cause for concern which is why my regular eye doctor decided to go ahead with the dilation even though I am breastfeeding.  Because there are no visible symptoms, it is key to get an eye exam, including dilation, every year especially if you are diabetic.

When I was at the doctor’s office, I also heard the term macular edema thrown out. Macular edema is when fluid leaks to the center part of the macula, where the straight-ahead vision occurs.  This can cause blurry vision.  Macular edema can occur at any stage of diabetic retinopathy.

The other scary term the doctor threw out was that I had hemorrhages in both eyes.  The official term is vitreous hemorrhage which is basically when new blood vessels are growing, they are often weak causing them to leak blood.  Hemorrhages can often lead to retinal detachment from scar tissue that is formed from the new vessels.

Diabetics are also more prone to cataracts and glaucoma, but luckily those weren’t terms being discussed.

I read that the first three stages of diabetic retinopathy don’t need any treatment, but once you get to the fourth stage, proliferative retinopathy, laser surgery called scatter laser surgery is the treatment.  Macular edema is also treated with laser surgery but a different kind, focal laser surgery. Scatter laser surgery and focal laser surgery are similar in a lot of ways.  They both have several hundred small burns placed on the eye.  Both surgeries can reduce vision but are also effective in preventing further vision loss (if that makes sense).  Scatter laser surgery is done to shrink the new blood vessels, while focal is done to reduce the bleeding. Focal laser surgery can be done in one sitting while scatter laser surgery might need more visits.  Both are fairly routine and done in the doctor’s office.

To end this post optimistically, I read that almost everyone with Type 1 diabetes will eventually have non-proliferative retinopathy (lucky us!).  But good blood sugar control can prevent the retinopathy from advancing.  Since this is already a really long post, I’ll update you on the retinal specialist appointment in my next post-stay tuned!

Another example of what my right eye looks like (this time with a cuteness factor added)

Another example of what my right eye looks like (this time with a cuteness factor added)

9 thoughts on “Diabetic Retinopathy – Part 1

  1. That had to have been so freaking scary I can’t even begin to imagine. The worst I had was a retinal tear, my opthamologist said it was more likely due to the pregnancy than the diabetes but he couldn’t say for certain. The laser surgery to repair it wasn’t bad, the migraine afterwards sucked something fierce though….

  2. Wow, this is tough to read — I can only imagine what it’s like to live it! I just hope the laser surgery (or whatever treatment you are given) clears things back up to to way they were before – easily and painlessly – so you can continue to gaze at that adorable child without a concern in the world.

  3. Thank you for sharing Kelly. It is good that you didn’t ignore it and went in right away. I am sorry to hear about it but as you said in the post – almost everyone with t1 will likely have some issues at some point. It is difficult but I know you will focus on the pros – like the technological advances available today to keep our eyes as healthy as possible over time. I am glad to hear that you connected with doc folks who have already faced these issues. We all do te best we can. Keep being awesome – it’s just another bump in our diabetes journey (although I can only imagine how devestatinng it felt at first). You know how it goes – the only wag out is through – and it sounds like you are taking all the roght steps to manage this the best you can! Yhanks again for sharing – I think it is so improtant! *hugs

  4. Kelley, I’m just getting to this now. I’m so sorry to hear about your diagnosis. You’re right… there are many who do just fine after diagnosis, and being optimistic is always good. Thank you so much for sharing your story. Hope you get nothing but good news from now on.

  5. Sending prayers your way. So sorry to hear. Thanks for the example of what it looks like. The cuteness factor photo is the best and at the same time frightening.

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