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 and 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 the way I felt and what I personally went through. My story will not be the same as yours or the next persons.
So now I have become a patient of the retina specialist at the Flinders Eye Clinic and he takes a look around and is… kind of shocked. My right eye has had no improvement, no blood has cleared and he is unable to really see anything at all. The injection in my left eye was relatively successful.
Anyway, he sits me down and relays this information to me and lets me know I need to have more laser, on both eyes. Due to the reaction I had last time he decides that is best if I am put under a general anaesthetic to avoid any problems with my eyes re adjusting and to make sure I still have the use of my left eye. We plan this for 2 weeks time.
2 weeks later I go back, and I am much less stressed knowing I don’t have to go through the horrifying procedure of having the block done. The surgery this time takes a few hours, when I wake my vision in my left eye is still blurred and holy shit, it hurts but I am told that (my left eye) is going to be ok and that all the vessels have been lasered, I will however need regular injections to maintain it.
My right eye, the news is not so good. The amount of blood pooled in the back of my eye is excessive and again the laser was not completed. I am asked to come back and have a vitrectomy in a few weeks time, as it doesn’t appear that my eye is going to naturally clear the excess blood.
A vitrectomy is the removal of a layer of gel inside the eye so things like the laser I required could be carried out more effectively.
Great, sounds fun, cant wait.
Again I am put under a general anaesthesia for this procedure.
The results were not immediate but a few weeks later I regained a slither of vision in the middle of my eye, like a lighting bolt through a black lens. I was thrilled, the doctor appeared optimistic it would only get better.
He was wrong.
It lasted maybe 3 weeks, and then I woke up one day and had no vision again. It was discovered that because of the amount of bleeding scar tissue had grown pretty much everywhere and that was now blocking my vision. Well blocking that tiny little line of vision I had for a few weeks.
It's now time for a check up to see how the second attempt went. Not well. i now need to have another vitrectomy and after an ultra sound, it is discovered that my retina is detaching. GREAT. So a vitrectomy (PVR) and oil placed between my retina and my eyeball to hold it in place. Oh yeah and because I was going over seas 6 days later, this was emergency surgery and I had to be awake.
I was to come back in 3 hours and have this. done.
"Don’t eat, don’t drink in case something goes wrong and we have to put you under." Reassuring.
Back I go…
I am in throws of anxiety and an absolute screaming mess again. Thankfully the anaesthetist is cool and calms me down using guided meditation and I am sedated. This was actually quite relaxing and dreamy and I barely noticed the awful things happening to my eye.
I am taken into theatre and the vitrectomy is performed along with more laser, and then the oil procedure.
Would you believe it was not a success and that I still couldn’t see?
I underwent 1 more vitrectomy (PVR) and one oil replacement surgery on my right eye before the doctor decided it was too traumatising for me to continue trying to treat this with no results.
So from December 2016 - June 2017 I had laser on my right eye 4 times, 4 vitrectomys and twice had oil put into my eye to hold my retina in place.
I had laser on my left eye once and 4 preventative injections.
During this time, no vision returned to my right eye. Not one little bit. My left eye struggled to adjust to being my only source of vision. I was tired; I was stressed, some days I could barely see.
I was given a black out contact lens for my right eye. While I can’t see any objects or colour, I can see light on occasion. So this lens is designed to stop the light from coming in and changing my vision from black to… I dunno, light grey? The aim to put less stress on my left eye.
I have lost the little independence I had left. I will never drive, I am unable to catch public transport as I cant read the bus numbers, see the gap to get on the train. I can’t go for a walk, it takes me forever to cross the road, everyday things are not easy. I will forever need an escort through airports and at events.
I have no depth perception, this means I cant see steps (shadows) and corners, and I essentially see most things in 2D.
I was a make up artist. I can no longer do the job I loved. I can do my own face most days; I use a mirror that has a 20x zoom. Some days even that doesn’t help. Some days I cant see my 55-inch TV. Some days I cant see your facial features; you are just a beige blur.
I struggle to use a laptop for more than 15 minutes, I can’t use an iPad. I will 100% not recognise you in the street. I wont see you walk up to me if you are on my right. I hold my head at a strange angle so I can have a more panoramic view than what I actually have.
I suffer intense migraines every few weeks, I vomit, I need to be in a blackened room, I can barely move.
My right eye is constantly infected, sometimes red, sometimes yellow… Dead. It is lazy. Some days I cant keep it open.
I have a new black out contact lens which I wear when I go to gigs, when its exceptionally bright outside, or when I know there will be lots of light adjustments.
I wear a contact lens for distance in my left eye and I have ridiculously strong reading glasses.
My treatment is ongoing, I have been diagnosed with Diabetic Macula Edema. This is fully under control thanks to the one shot of laser and regular injections. I now only require check ups and injections every 3 months with my last injection being in November,
My right eye has shown no improvement and it is unlikely that it ever will. I will sporadically need to have the oil changed which will require surgery, but hopefully not too often.
My left eye is my life, my soul. It sees my son, my family, and my friends. It lets me live. I am blessed to be surrounded and supported by my family and my friends, especially my son, who is the reason I will continue to fight this disease.
To quote My Chemical Romance.... We'll carry on ......
I have not let this beat me, I have travelled the world with this condition for many years and since being diagnosed with Proliferative Diabetic Retinopathy I have continued to do so. I attend my sons football games every weekend, take him on mini escapes as often as his school schedule allows, seeing him grow up is my priority. Diabetes has taken part of my life away, I will not let it take anymore.
As I went through the ER originally when this first happened, I was seen as a public patient. This means I did not get to choose my doctor/surgeon.
The waiting times are excessive when you have appointments and you are often double booked, especially if you need an emergency/last minute appointment.
HOWEVER, this whole process over the last 16 months has not cost me a single cent. It has all been covered by Medicare. I am very grateful for this.
If I had been seen privately, I would have selected to see the same Doctor I am now seeing. This process would however have cost me thousands, I would have needed a referral, had to wait months for an appointment. Each surgery would have cost me, each injection would have cost between $800-$1600. Some of this would have been covered by Medicare and private health fund. I am unsure how much.
I attempted to switch from public to private with my doctor but he said it wasn't necessary and we have developed a great doctor patient relationship and it is now a lot easier for me to get in when I need to and I don't have to worry about being seen by someone else.
If this blog stops one person from doing what I did, or helps one person change the way they are looking after their Diabetes, then I have done my job.