I had a life changing experience this week and I’m still processing it all. To help you understand the context and significance I need to go back to my early childhood. I wore glasses from when I was a toddler. I was born with a lazy eye which even back then could have been corrected by wearing a patch over the good eye and retraining the lazy eye. Us as children were not a priority for our parents. My mum told me when I was older that she didn’t make me wear the patch because I kept banging into things. When I understood a bit more about the condition I checked again why they didn’t keep up with the patch as I may have better vision if they had. My mum couldn’t really take criticism so she said I kept pulling it off and wouldn’t wear it. I don’t know about that but I do know I was a toddler and they were the adults. Sometimes as a parent you have to do the tough love. I think it was much more about the fact that they were never around but always working in the pub below or drinking and children’s needs were an afterthought. The other regular occurrence was my glasses would be regularly broken. I was an active child which caused some mishaps but also my chaotic home life challenges created a few broken frames too. The glasses were eventually replaced but months later. By the time I was 13/14 I was going to the opticians myself to get it sorted.
As an adult I’ve never really had much vision in my left eye. My right eye has had to work really hard to do the work for two. That meant o went into variifocals in my early 30s which is much earlier than age related deterioration changes.
When I started having problems with my eyes after my stem cell transplant I was referred to the ophthalmology department at Kings. They discovered I had very dry eyes probably related to the graft verses host disease I developed from the stem cell treatment. I had blepharitis and marks on my cornea and cataracts in both eyes. They gave me some treatment and advice that sorted the other problems but the cataracts continued to slowly develop. These came about as a result of being on steroids, at times at very high doses, for the last 10 years.
As the cataracts worsened my vision also slowly declined but because it’s so slow you don’t notice it. Eventually though driving at night started to be problematic. The glare from headlights was just awful and created a starburst effect. I knew I would have to get it sorted as my independence was now at stake.
The ophthalmologist confirmed I needed surgery. This made me very anxious. You might think this strange as I have my bone marrow biopsies and Hickman lines with no sedation. I take most things in my stride but this was different. Not because it was eye surgery which I know makes some people squeamish but because it was surgery on my only good eye. If any thing went wrong I’d be in major difficulty.
The day came and on Wednesday I presented myself to the day surgery unit at 7.30am. There were 6 of us having cataract surgery on the morning list. The order you went into surgery depended on how fast your eyes dilated. I was told my brown eyes might take longer to dilate. Fortunately mine weren’t too bad and I ended up in the middle of the pack. Then when they did the checks to take me through they noticed I had a positive VRE result on the system. This was dated Feb 2024 which is when I was an inpatient. I knew nothing about it, nor did I know what VRE was. I explained that if haematology thought I was still positive they would treat me separately from the rest of our vulnerable community. The chap doing the screening said he was bound by the units protocols. He went on to explain that I’d still have the procedure done but had to be at the end of the list. I accepted my fate but was slightly perturbed. This was because I was unusually anxious and just wanted it over and done with. Normally I don’t care. The guy explained that I’d be at the end of the morning list so they could do a clean over lunchtime to prepare for the afternoon.
At this stage I thought a +VRE was another respiratory infection. I sent an email to my outstanding haematology team and my lovely CNS (clinical nurse specialist) who mailed back explaining it all to me. VRE is an antibiotic resistant bug. Lots of people have this as a harmless bug in their bowels. In immunocompromised patients like myself it can be problematic. I didn’t expect my bowels to be brought up when I was having eye surgery! Lol
The consultant anaesthetist was a smashing bloke. He had a really good bedside manner. I think he was a bit surprised when I answered his questions about my health. He asked me how I felt about it all after he’d gone through it. I said I was unusually anxious for me who normally doesn’t suffer from anxiety. He said lots of people don’t like anything to do with eyes. I said it’s not that, it’s because it’s my only good eye. He totally understood that. He said there was only a 5% chance of anything going wrong and he was sure I’d be fine. He said that to me to reassure me but it didn’t. I think those were the odds for hearing damage from the transplant and I got that!
When they took me in, another problem occurred. The chair that turns into an operating bed was not made for someone my size. The only way I could get my head in the head rest was to push myself up on my feet which left my hips up in the air. Lol. We were all laughing. In the end 3 carefully placed pillows under my arched body did the trick. The guys that went in search of the pillows said they had to sign a contract in blood to ensure the pillows were returned because they are like gold dust in the unit. Tee hee!
I won’t go into details of what the procedure was like because I know some people would find that difficult. For anyone who is having cataract or lens replacement surgery, please don’t worry. It’s a painless procedure. The drops really numb your eye and you don’t feel any of the fiddling. Instead you are given an amazing light show as you lay there. It’s like lasers flashing across the sky in swirling patterns instead of straight lines. It was quite nice for me as I like light in the darkness.
When they’ve finished you have a patch put on your eye then a shield on the top of that that has to stay in place for 24hrs. Then they slowly sit you up. Next the nice chap assisting in the operating room walked me back to my seat. I had to take his arm because I was suddenly thrust into the world of being legally blind. My left eye has vision but it’s not meaningful. I see shapes and movement but not faces and details. I see light and dark so can pick my way around if there is a contrast between what’s on the ground and the floor. If it’s the same colour I don’t see it and discovered I will bash into it.
The journey home was interesting. Maggie is a good driver but I found myself not being able to read the road so I was unable to prepare for speed bumps or twists and turns. It wasn’t the nicest of journeys for me as a result.
We got in and I put the TV on but couldn’t make out faces yet alone the subtitles. In the end we had Judge Judy on as she shouts a lot so I could hear and I didn’t need to see any action. I also listened to the radio and some podcasts. I operated the remotes by feeling or memory from where the buttons usually are. As I moved around to go to the loo or get something from another room, I moved cautiously. Despite my caution I have a few extra bruises to add to my collection. It was a very sobering and disabling experience. My heart goes out to all struggling to learn to live with sight loss. Mine was only for 24 hours and I don’t want to repeat it.
I slept well that night and had only the mildest of pain. The next morning Maggie cleaned my eye with cooled boiled water after removing the dressing and then I tentatively opened my eye. Initially it was a bit swimmy and blurry but after a few blinks that cleared and OH MY DAYS! I do not remember not wearing glasses. For the first time in my life I could see clearly. I found it utterly amazing and quite emotional. I could see depth, colour and definition in a way I’ve not seen before. Those of you that have been in a John Lewis Department Store and strolled through the TV section will know how vibrant the TVs seem. They are set on the best settings to show their 4K or high definition settings off in the best light. I feel like I’ve woken up with a 4K eye and am finally living in a high definition world. It’s absolutely incredible. My flabber is well and truly gasted. I’m used to seeing the world contained with the frames of my glasses. All of a sudden there’s no frame and I can see more in the image than I could before. It’s a modern day miracle. I’m incredibly blessed to have such amazing people around me whose skill and expertise help keep me going again and again and again. Thank Hod for the NHS and the fantastic people who work in it.
So coming right up to date I’m doing my drops X4 a day for the next month. One set is X4 this week, then X3 for a week, then 2 and finally 1. The other set remains 4,times a day. My phone alarm schedule is quite complicated to set to remind me to do all this. Lol. When I go out I have to wear the shield or a pair of glasses to protect my eye for a couple of weeks. Luckily I had some yellow tint sunglasses that my brother-in-law lent me to help me cope with the glare at night. I used them until I popped into Waitrose for a couple of bits and saw they had a small stick of off the shelf sun glasses. I paid the princely sum of £23.50 for a pair of polarising sunglasses. 😎 I was made up. In the past I’ve paid up to £700 for prescription polarising specs. What a difference. Tomorrow I’m off to the pound shop to get a cheap pair of readers. I won’t need everyday glasses going forward but I will need reading glasses. I can live with that. I’m still absolutely incredulous at the transformation and very happy to share this remarkable news with you all.
I leave you with some of the wonderful things my amazing new eye has seen today. Love and hugs everyone.
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