Claire's Medical Trip to the UK
Donation protected
My medical journey started in 2008. I woke up went to work as normal but had an uncomfortable pain in my eye. I worked at a medical Centre had a Dr look at eye and he sent me home. What would normally take 30 minutes to get home took me well over an hour the brightness outside was debilitating the pain was something I can't describe. After 4 days taking pain relief and no sleep I went to the PA hospital eye emergency in Brisbane. Things all of the sudden became real and very scary. I had to have a corneal scrapping ( while your awake they numb the eye with drops and scrap eye with razor) and was told I may have my eye removed (I remember begging for this at one point) with in the week I was diagnosed with Acanthamoeba Keratitis or AK for short. So AK is a rare disease a parasite that invades the cornea of the eye and eats it for me it ate cornea, and optic nerve.I spent the first 7 weeks in hospital having a regime of eye drops. The drops used are toxic an example is PHMB it's chlorine based so having drops every 15 minutes 24/7 was just agonizing causing ulcers on the eye. My Dr's had me on a morphine infusion I was exhausted sleep deprived, I was living in darkness as you couldn't handle light and I missed my family terribly, my condition just wasn't improving at one point I was on IV steroids due to high pressure.
As time went by I continued to have surgeries eye blocks and a corneal transplant unfortunately I didn't gain my sight back. As the parasite ate my optic nerves and destroyed nerves around my eye I was sent to a neuro surgeon, after MRI, scans I was diagnosed with trigeminal neuralgia a neuropathic disorder with intense pain in the face, it has been described as one of the most painful conditions known. Next step brain surgery, ok so now I was terrified yet all I could think was will I finally be pain free. I was at this stage taking over 38 tablets a day as well as injections ever 4-6 hours I was at my wits end.
So I had surgery and things went from bad to worse... sadly they were not able to reach the nerve branch in my face and that's when things took a turn for the worse. While in recovery I suffered a stroke I couldn't talk, eat or walk I couldn't feel my left side from my neck down. So I had a long stay in hospital learning the basics again with determination I did it took time and there were many moments I wanted to give up. As of today I am still blind in my left eye and suffer severe pain. I can not feel my left side from the neck down but I'm alive and very greatful. I still take lots of medications to help me function but it's getting worse. My goal is to help others who have been struck with AK and of course enjoy my family but it is getting harder. I have researched and found a surgeon who specializes in neuro and opthamology in Moorfield eye hospital,London who will treat me but this comes at a cost medical fee's, travel, accommodation etc. As this Dr specilizes in the brain and eye he may have alternatives to help me this would be life changing and something I so desperately want and need not just for me but for my family, I'm only 36 and I just desperately want some normality . I am not one to ask for help and this is a big step so here I am asking for help. I wish to thank you all in advance x
As time went by I continued to have surgeries eye blocks and a corneal transplant unfortunately I didn't gain my sight back. As the parasite ate my optic nerves and destroyed nerves around my eye I was sent to a neuro surgeon, after MRI, scans I was diagnosed with trigeminal neuralgia a neuropathic disorder with intense pain in the face, it has been described as one of the most painful conditions known. Next step brain surgery, ok so now I was terrified yet all I could think was will I finally be pain free. I was at this stage taking over 38 tablets a day as well as injections ever 4-6 hours I was at my wits end.
So I had surgery and things went from bad to worse... sadly they were not able to reach the nerve branch in my face and that's when things took a turn for the worse. While in recovery I suffered a stroke I couldn't talk, eat or walk I couldn't feel my left side from my neck down. So I had a long stay in hospital learning the basics again with determination I did it took time and there were many moments I wanted to give up. As of today I am still blind in my left eye and suffer severe pain. I can not feel my left side from the neck down but I'm alive and very greatful. I still take lots of medications to help me function but it's getting worse. My goal is to help others who have been struck with AK and of course enjoy my family but it is getting harder. I have researched and found a surgeon who specializes in neuro and opthamology in Moorfield eye hospital,London who will treat me but this comes at a cost medical fee's, travel, accommodation etc. As this Dr specilizes in the brain and eye he may have alternatives to help me this would be life changing and something I so desperately want and need not just for me but for my family, I'm only 36 and I just desperately want some normality . I am not one to ask for help and this is a big step so here I am asking for help. I wish to thank you all in advance x
Organizer
Claire Wilkinson
Organizer
South MacLean, QLD