I think it’s necessary for me to pre-face this blog by stating that I am NOT a medical professional, I do not have access to any notes or records from my experience with Proliferative Diabetic Retinopathy as I was seen as a public patient so this is all written from my memory. I do not know the medical terms for most of the things that I have experienced. This is what I personally went through. My story will not be the same as yours or the next persons.
I will address the differences between being a public and a private patient in a follow up blog.
I also want people with T1D to know, you are not bullet proof, this disease is serious and the side effects are horrible. This process with my eyes started for me in September 2016, I had no signs of this a year earlier. I had posted a blog in 2014 about how healthy my eyes were. WERE.
Please look after yourselves, don’t skip injections, don’t over indulge in the things you shouldn’t. Every thing in moderation. Parents, don’t blame yourselves. Support each other, don’t be another me.
My biggest regret in life is the 5 years I didn’t give a shit about T1D, 11 DKAs, cataract surgery, Diabulima.. Didn’t bother me then. Let me tell you, it bothers me now...
Writing this has been a lot harder than I thought it would be so, I will be sharing it over a few posts rather than all in one big hit. If I am completely honest, I probably had not processed nor accepted that this condition is permanent and my specific case is irreversible and as it turned out, very difficult to treat.
Late September 2016 I started to notice vision in both my eyes was slightly blurry. I put it down to me needing to get glasses for distance, as my reading script was ok most of the time. This progressively got worse through October and November, to the point where my friends began to notice and show concern for my lack of vision. I made the decision to wait until January 2, 2017 to see an optometrist for new glasses so my private health would cover the costs.
The decision to wait was a mistake.
On Thursday November 24th, I was casually having a bath when I noticed something floating in my right eye. I immediately thought it was an eyelash and attempted to blink it away unsuccessfully. Then I rubbed my eye, this was also unsuccessful. I got out of the bath, got dressed and about 5 minutes later, so maybe 15 minutes after first noticing this “eyelash”, I felt a slight pop in my right eye and my vision slowly started to cloud and turn dark, dark red, then eventually fully black.
“OK, this is a bit fucking weird” I thought but I was not immediately concerned, I’d had problems with my eyes for years, including cataract surgery as a teenager. I had a bit of a giggle to myself, because of course if something weird was going to happen it was going to happen to me. I texted my mum and told her what had a happened, made a smart arse post on Facebook about it along the lines of “I’m already blind, so it can’t possibly get worse”. Little did I know. People urged me to go to the ER straight away. I decided I would see what happened when I woke in the morning. To my great surprise, I still couldn’t see anything out of my right eye.
Example of vision in my right eye
That afternoon I went to the Doctor. He sent me straight to the ER. He suspected my retina had detached. Now when I say all I could see was black, I literally mean all I could see was black. It was like my eye was closed. I couldn’t see the doctor, how many fingers he was holding up, no light recognition, not a thing.
I was rushed through to the Flinders Eye Clinic to see the Doctor on call. The whole thing took maybe 15 minutes and in that time he checked both eyes, noted I had previous cataract surgery, asked how long I had had Type 1 Diabetes, my hbA1c and when the last time I had been in DKA. The answers were, I was 17 and then 18 years old when I had cataract surgery on my left and then right eye, 20 years I had been T1D, 8.1 was my hbA1c and had been in that range and well controlled for the past 11 years, I had not been in DKA since I was 19 (12 years prior).
He then diagnosed me with Proliferative Diabetic Retinopathy; I had grown unhealthy blood vessels in the back of my eyes, due to poor blood sugar control in my teenage years. These vessels in my right eye had hemorrhaged and blood had filled the back of my eye and was blocking my vision. My left eye (which was my “bad” eye with the cataracts) had a few extra vessels but they weren’t in danger of exploding like my right eye. I needed laser ASAP to save my vision in my right eye. I was booked in for the following Friday to have laser on both eyes to stop the bleed in my right eye and to seal and shrink the vessels in my left. Cool, ok, no big deal, I’ve had YAG laser before after I had cataract surgery, nothing invasive.
I was worried, but not too worried.
I was rushed through to the Flinders Eye Clinic to see the Doctor on call. The whole thing took maybe 15 minutes and in that time he checked both eyes, noted I had previous cataract surgery, asked how long I had had Type 1 Diabetes, my hbA1c and when the last time I had been in DKA. The answers were, I was 17 and then 18 years old when I had cataract surgery on my left and then right eye, 20 years I had been T1D, 8.1 was my hbA1c and had been in that range and well controlled for the past 11 years, I had not been in DKA since I was 19 (12 years prior).
He then diagnosed me with Proliferative Diabetic Retinopathy; I had grown unhealthy blood vessels in the back of my eyes, due to poor blood sugar control in my teenage years. These vessels in my right eye had hemorrhaged and blood had filled the back of my eye and was blocking my vision. My left eye (which was my “bad” eye with the cataracts) had a few extra vessels but they weren’t in danger of exploding like my right eye. I needed laser ASAP to save my vision in my right eye. I was booked in for the following Friday to have laser on both eyes to stop the bleed in my right eye and to seal and shrink the vessels in my left. Cool, ok, no big deal, I’ve had YAG laser before after I had cataract surgery, nothing invasive.
I was worried, but not too worried.
Difference between Non-proliferative and Proliferative Diabetic Retinopathy
I showed up the following Friday and was led down to the day surgery section of the Eye Clinic.
“Just lay down on the bed here and we’ll get this injection and block sorted.”
UMMMM, what the fuck? What block? What injection? WHAT ARE THEY TALKING ABOUT? Yeah, so it turns out to have laser for this you need to have a local anaesthetic block in the back of your eye. As I now understand it, into your retina to stop the pain and to make the laser process easier.
Right ok… Let me tell you, this was horrifying. I was crying, yelling, shaking. No fucking way I was having a needle in my eyeball. NOPE. Of course I had to and I did. But it was not easy, and instead of taking 10 minutes this process took over an hour and required 3 nurses to hold me still.
To simplify the process:
Eventually, I was ready for the laser.
The laser was nothing, I felt nothing, I saw nothing. Apparently the Doctor also saw nothing because there was so much blood pooled in the back of my eye. He did what he could see and informed me I needed to have this whole thing done again in a few weeks. Great.
“Did I want to do my left eye while I was there?”
Without the block because obviously, that was too much for me to go through again.
"It just kind of feels like snapping a rubber band in your brain."
Oh, ok sure, go for it. I sat through 3 agonising laser shots. Yep, rubber band to the brain. Not to mention the super bright laser. It was not a good time.
I was then convinced to have a preventive injection into my left eye to get me through the few weeks until the next session with out any bleeds. This honestly was the last thing in the world I wanted to do, but I also did not want to be blind in both eyes.
The process for this was:
I looked in the mirror after and noticed my right eye was a bit red, was told that was normal and would settle in a few days, there would be no side effects and I wouldn’t feel any pain and off you go home, see you soon.
Well of course that didn’t happen did it?! Of course I had a reaction to the block, which resulted in severe pain and headaches. I had to get one of those 24-hour doctors to come out and give me script pain meds. Of course my eye didn’t just stay bloodshot. It became filled with blood and I affectionately named it the blood eye. This lasted for almost 6 weeks.
“Just lay down on the bed here and we’ll get this injection and block sorted.”
UMMMM, what the fuck? What block? What injection? WHAT ARE THEY TALKING ABOUT? Yeah, so it turns out to have laser for this you need to have a local anaesthetic block in the back of your eye. As I now understand it, into your retina to stop the pain and to make the laser process easier.
Right ok… Let me tell you, this was horrifying. I was crying, yelling, shaking. No fucking way I was having a needle in my eyeball. NOPE. Of course I had to and I did. But it was not easy, and instead of taking 10 minutes this process took over an hour and required 3 nurses to hold me still.
To simplify the process:
- You are given numbing eye drops, then a local just above your eyebrow, then more numbing eye drops, then your eye is held open with one of those creepy things you see on TV, you then have another anaesthetic INTO YOUR EYEBALL.
Eventually, I was ready for the laser.
The laser was nothing, I felt nothing, I saw nothing. Apparently the Doctor also saw nothing because there was so much blood pooled in the back of my eye. He did what he could see and informed me I needed to have this whole thing done again in a few weeks. Great.
“Did I want to do my left eye while I was there?”
Without the block because obviously, that was too much for me to go through again.
"It just kind of feels like snapping a rubber band in your brain."
Oh, ok sure, go for it. I sat through 3 agonising laser shots. Yep, rubber band to the brain. Not to mention the super bright laser. It was not a good time.
I was then convinced to have a preventive injection into my left eye to get me through the few weeks until the next session with out any bleeds. This honestly was the last thing in the world I wanted to do, but I also did not want to be blind in both eyes.
The process for this was:
- Numbing drops, creepy eye opening thing, injection. The end.
I looked in the mirror after and noticed my right eye was a bit red, was told that was normal and would settle in a few days, there would be no side effects and I wouldn’t feel any pain and off you go home, see you soon.
Well of course that didn’t happen did it?! Of course I had a reaction to the block, which resulted in severe pain and headaches. I had to get one of those 24-hour doctors to come out and give me script pain meds. Of course my eye didn’t just stay bloodshot. It became filled with blood and I affectionately named it the blood eye. This lasted for almost 6 weeks.
When I went back for my next appointment and expressed what had happed to me post surgery, it was a big mess. I saw 3 different nurses and 2 different doctors and was eventually told that I had a very rare reaction to the block. So rare, that they neglected to tell me it could be an option because they had never seen it happen. Cool, this was going well.
My vision had not cleared nor improved and was still black. I was referred to the retina specialist (why wasn’t he my Doctor in the first place you might ask? Because I went through ER in the public system is the answer, more on that later).
At this point I am informed how severe the condition is in my right eye and there would be numerous laser and surgeries to come in the next few months…
TO BE CONTINUED…
My vision had not cleared nor improved and was still black. I was referred to the retina specialist (why wasn’t he my Doctor in the first place you might ask? Because I went through ER in the public system is the answer, more on that later).
At this point I am informed how severe the condition is in my right eye and there would be numerous laser and surgeries to come in the next few months…
TO BE CONTINUED…
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