Tuesday, October 2, 2018

Study Subject

Something that has always been a big fear of mine regarding my diabetes, and potential complications, has been loosing my vision. I think this is a common fear for those of us with diabetes, since the first things we hear about are going blind, loosing limbs, and our kidneys failing.

Around 10 years ago, my yearly visits at the eye doctor began to show the signs of diabetes in my eyes. They were small, but there. At first, it was devastating for me. There was nothing to be done.
Over time, the spots disappeared and then came back again and never left. There was no change to my vision, and literally nothing that I could do, other than do my best to control my blood sugars and hope that my eyes held steady without getting worse.

See, when you have diabetes, your blood sugars are not normal all the time. This causes issues with your eyes because the blood sugars can make your eyes think that there need to be more, new vessels in them. So they begin to develop. The problem is, these vessels aren't supposed to be there so their weak and can leak and bleed. The bleeding causes vision loss, and at that point, it is typically treated with injections of medication and laser surgery.

I had those vessels and spots in my eyes, but they weren't bleeding. Yet. Back in the summer of 2017, I had a scheduled eye appointment with my eye doctor, and while I was waiting on him, I noticed a sign on the back of the door advertising a study for those with Diabetic Macular Edema (the term for the leaky vessels and spots) but no bleeding. When the doctor came in, we talked about my eyes, and without me bringing it up, he suggested I might be a good candidate for the study.

Ultimately, the study involved an existing medication that is used to treat bleeding in the eyes. It is injected into the eye, and they wanted to see if the medication could be used BEFORE the bleeding began, to help hold off, or improve the state of the leaky vessels and spots in the eyes. Before the vision damage and the laser surgery.

They gave me some information on the study (okay, a TON of information on the study), and I took it home to think about it and to pray. Ultimately I decided to give it a try. There was no guarantee I would even qualify for the study, so it couldn't hurt to try.

The initial visit involved a LOT. It was around 6 hours of tests (vision tests, pregnancy tests, blood pressure, medical history, EKG, medical history, pictures of my eyes, etc). The doctor was only interested in submitting my left eye (the eye with the most damage) to the study, but they were through and did everything for both eyes just in case.

This ultimately turned out to be a good thing. My left eye was rejected by the study as having too much damage. On a whim, they submitted my right eye and the study accepted it! What this meant was that I was going to be part of a double blind study. Meaning my doctor and myself would not know if I was getting the medication or not. Only the doctor who would give me the injections and the study coordinator would be aware.

I was concerned about my left eye, as it was showing more damage, but I found out that the company had allowed the doctor to actually treat my left eye with the medication for SURE, no blind study at all. This was amazing for me and I was more than happy.

Fast forward a bit over a year, I'm still in the study. This study is two years long, so I still have until next summer. I have gone to the eye doctor anywhere from every three weeks to every eight weeks. Each time I go, there are pictures involved. Sometimes there are blood draws. Sometimes there is dye injected (not into my eyes, but to help take pictures of my eyes).

Each time, I get an injection in my study eye (the right eye). For a while, I also received an injection in my left eye that I know has the medication. After several visits, my eye doctor (the one who does not know if I am getting the medication in my study eye), stopped me from getting the injections in my left eye because the eye looked so much better. I went from November to May with no injection in my non-study eye. I had one more injection in that eye and have not had another since.
I'll say that I've seen the pictures of both my eyes. My left eye (non-study eye) that I know has been getting medication looks amazing. The spots and leaky vessels that were there before are nearly gone. There are a few tiny spots here and there, but the leaky vessel spot that had caused me so much worry is now gone. What remains are the outlines of where the blood was and some small white spots that my eye doctor has told me are like scar tissue. In my study eye, the spots that were there have diminished greatly, though I can't be 100% sure that I'm getting the medication in that eye. I will say that the "before" and "after" pictures and comparing to the improvement in my non-study eye, I can assume that I am.

I'm doing this study for selfish and non-selfish reasons. Selfish, because I want the latest medicine. I want to keep my vision. I want to avoid laser surgery. Non-Selfish because I have too many friends with diabetes who have vision problems, have dealt with laser surgery and vision loss because of diabetes. And maybe if there had been an option like this, they would have had a different story. Maybe it will help the others out there who aren't to the point of vision damage yet.

I still have a little over a year left in this study. My hope is that my eyes will have improved so much that there isn't much else to do. I always said I wanted to be part of a diabetes study, but this was NEVER what I imagined. Let's be honest, I was thinking new technology! This, however, has been an amazing experience so far. Sure, injections in ones eyes aren't joyful, but they aren't nearly as bad as I imagined, and the benefits outweigh everything else.