Living With Bullous Keratopathy (Corneal Edema) | Visual Impairment Series | BirdNerdSophie
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- เผยแพร่เมื่อ 8 ก.ย. 2024
- Hi everyone, thanks for checking out my video all about my experience of living with bullous keratopathy after congenital cataracts surgery! If you are here for parrot videos - more are coming soon!
If you have any questions, please leave them in the comments as I'd love to chat to you!
My Instagram: / birdnerdsophie
The Birds’ Instagram: / chip.and.fish
David’s Instagram: / wargamingparrot
David’s Channel: / @theparrotteacher
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#visualimapirment #visuallyimpaired #partiallysighted
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Your channel is definitely 1 of my favourites because it incorporates 2 of the biggest parts of my life visual impairment and parrots
Hey Kylee, I replied to your comment but TH-cam seems to have deleted it! Thank you so much for watching my channel - it's great to find someone like me too! Would be great to see more videos on your channel too! :)
My story.
I was born with transposition of the great arteries and had to have life saving open heart surgery @ 6 weeks old. I then developed congenital cataracts, which I had removed @ 6 months (I have since read that cataracts can form after a serious illness and I was in an incubator and a head box to give me oxygen just to keep me alive due to my heart condition). Anyway, after having the cataracts removed I was left with aphakia in both eyes, but with a delay in the cataract surgery, my right eye is far stronger than my left, which I can barely see out of, and have amblyopia in both eyes, left worse than right, and also have nystagmus in both eyes. As this was in 1984 I was told I wasn’t given any lens replacement because, at the time, they didn’t think they’d last a lifetime so left me without lenses. Consequently, I had to wear bifocal glasses as a child (which were like fish bowls and caused me great distress on hot, summer days) and made me a target for bullies at school, hence my lack of friends and social anxiety now.
When I turned 20 in 2004 and realising that I was growing up and wanted to give myself at least half a chance of attracting girls (which never happened due to confidence issues) I switched to Extended Wear Contact Lenses, which were soft lenses I wore all the time and even slept in, which regular checkups and new lenses being ordered by the hospital. My consultant at the time did say about having an IOL but was happy with the lenses so kept with them. However, in 2017, I made the decision to investigate the IOL Surgery, as I was tiring of the contacts as I had no-one to change them and keeping them looked after was starting to become a burden, but at the same time the hospital optician went on the sick and as they didn’t have a replacement I couldn’t get any lenses. When I finally did a few months later, it was too late as I had developed Keratitis from over wearing of the lenses I couldn’t get replaced, in my right eye, the only eye I see out of so was rendered effectively blind, which terrified the life out of me and is the worst thing I’ve knowingly gone through,
and ended up in a specialised eye hospital for a week receiving treatment to fight the infection. Whilst my sight was saved, the infection left a permanent scar in my eye which has made my vision worse, and so had to go back to glasses (I’ll never wear contacts again and encourage everyone else to not wear them). Exactly a year later, after having investigative tests for an IOL I was found to have had a detached retina in the same eye (my right eye the only one I see out of) and whilst I had successful surgery, due to the silicone oil used, it left me with glaucoma and now have to take eye drops for the rest of my life to keep my eye pressure down. In 2020 my new eye consultant said it would be dangerous for me to have lens implantation surgery as due to me having no lens in my eyes for 38 years, the shape of my eyes has changed and he would have to put the lens on my cornea, which was damaged by the keratitis, and is reluctant to do it in case it damages it further and / or my body rejects the implants this meaning I’d need a corneal transplant and thus leaving my vision worse, so I’ll be aphakic for the rest of my life now.
After what I’ve been through I’m glad of what little sight I have, but my dreams of having my own lenses in my eyes seem over now so I’ll have to stick to thick heavy glasses and a constant change between reading and distance, which is a pain, but far preferable to contacts which nearly blinded me.
To those who can have the IOL, yes I know it’s scary, but you should have it done, at least you’ll be able to, some of us aren’t as fortunate to have that option not unless, as my consultant says, technology improves in the future to give me that option.
Hello Jon..I really need to talk to you
@@kalemberobinah8022 ok ✅, what about?
I love your necklace! And when you said scratch on your I reminded me of my fear of confetti. All my friends think it weird but just imagine confetti cutting your eye. I’m so sorry you actually have to feel that.
Thank you! 🦕 I don’t always get to wear jewellery as the birds try and bite through the chain but I thought I would today haha!
Lol my budgie hates bracelets, I’m trying to desensitize him.
The Birdie Buddies oh bless 😂 also your full comment didn’t come through when I replied! I don’t think it’s weird, though confetti tends to be softer round the edges! It’s an unpleasant condition but I manage. The birds keep me distracted from it all most days! 🐥
Thank you so much for sharing this helpful video. I had cataracts removed from both my eyes when I was a baby and developed glaucoma as a complication of surgery. I just developed bullous keratopathy after my fifteenth eye surgery and it’s very painful. It’s helpful to hear someone else’s experiences.
Hi Beckie, thanks for watching! I'm sorry to hear that your bullous keratopathy is painful too - do you ar a bandage lens like me, or are you considering the cornea transplant surgery?
@@BirdNerdSophie right now I’m just using Muro eyedrops and ointment to control the pain. I am scheduled to see a cornea specialist in December. I don’t know what the other options will be. I do glaucoma eye drops four times a day so I don’t know if they would absorb through a contact lens. Hopefully the cornea specialist will be able to help. I am planning to put off a transplant as long as possible. I’m glad to hear you made it ten years!
This sounds painful, too painful. And yes, most of the time we have to explain what's going on with our eyes to doctors who aren't specialised in ophthalmology. I know because I too have a rare eye condition. I never heard of this one before, good to learn.
Yes it’s very painful, I’m just glad we have found a way to minimise most of the pain on a daily basis! I know general doctors can’t know of every illness, but it takes away my trust in their decisions when they don’t know what it is I deal with!
Let’s chat! I have it too.
Could you please enable the youtube subtitle for portuguese language
Hi Thais! I don't know how to change the subtitles as I think TH-cam creates them but I will look in to it!
@@BirdNerdSophie Hi Sophie, Thank you.😊
Hi sophie
What zoo did you work at?
Stay safe
Hey! I won't say exactly, but I can tell you that it is in Surrey 😃🐦 Hope you and the birds are okay!
@@BirdNerdSophie definitely know the one then LOL
I can't wear contacts because my irises are incomplete, a regular contact would not fit. The idea of putting things in my eyes is terrifying.
I've never had a surgery because I have no cure to my condition.
Yes it’s difficult when we all have slightly different shaped eyes, maybe they will be created one day! It look a really long time for me to learn to put them in, having things come towards my eye was scary and I’d back away instantly!
I guess we just make the best of what we have been given, it’s hard at times, and regular tasks can be challenging, but it makes it all the more satisfying when we achieve things!
Hi, my name is Thais. I live in Brazil. I have low vision. I have bullous keratopathy and use a therapeutic lens. I don't understand English very well, but I would like to know other people's experiences. Thank you for telling your life story.
Hi Thais, it always interesting to meet other people with the same condition. Is your painful?
@@BirdNerdSophie Hi Sophie.
I discovered bullous keratopy almost 1 year ago. I currently wear a therapeutic lenses because when the blisters burst, the pain is terrible. However, I don't think about having a corneal transplant.
@@ThaisTha1 yes the pain is very bad for me too! I have had it for 10 years now though using lenses and I am managing fine!
@@BirdNerdSophie Really? I’m using hypertonic eye drops and lubricating eye drop.
Good week.
Hi what contact lenses do you use/buy. Thanks
I use Bausch and Lomb Pure Vision 2 😊
If you think shes Dumb guess Wrong shes big brain... With 3 big brain birds.. And also dont make fun of her eyes.....
Haha Josue, you are always making me laugh! You can team up with Pickles and be my security guards haha! 🐦
@@BirdNerdSophie pickles will screm attaccers to death LOL
Hi Sophie! My heart goes out to you! I am a cornea transplant recipient twice! I emailed you my contact information. We need to talk! Blessings!
Hey Paul! Thanks for commenting! I'll check out your email! :)
Hello my friend I love 💕 to chat I am from Arabia age 44 a mommy with lots of pets Nice to meet you
Hey! Thanks for watching :)