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@keratoconuslife
Moving on From Tumblr to New Adventures (Blog Site)
Hi all,
I just wanted to post that after today, I will no longer be posting my updates and experiences with KC on Tumblr anymore...
HOWEVER, I have migrated my Tumblr posts onto my NEW WordPress blog, TheKeratoconusLife.
I just wanted a change of scenery and felt like WordPress was more my thang. Thank you, Tumblr, for de memories!
Hope to see you guys on my new blog!
Check Up Appointment (16/07/2018)
Had my first checkup with my consultant since my incision surgery, and it was a very standard day at the eye clinic.
Checked in, had my eye test, then had them scanned then saw my consultant for a couple of minutes, and left.
I had a previous check-up with someone who was filling in for my normal consultant, who was on annual leave but received a letter couple days later saying I was going to see my consultant within the next few weeks anyway, so I took that as a hint of him wanting to double verify my non-consultant’s views.
So basically my astigmatism has gone down dramatically. Still not great, but enough that they want to try refractions (glasses). So I should be back within the next couple months for that. If that doesn’t work, however, they will look into doing laser eye surgery. But, apparently, I’m almost at the end of my cornea transplant journey of fixing the wrongs and whatnot.
I feel incredibly grateful for my eye care team, who are a brilliant bunch of people. I have never met a group of professionals who were so caring and dedicated to helping others. And I will always adore their hard work. I just hope I’ve been a dream patient for them.
If things go according to plan, I will probably go back to just seeing them every now and then to see if everyone checks clear. With the occasional call for an emergency appointment. Especially if my right eye starts playing tricks again (which, luckily, it’s behaving itself. For now!)
But that’s the update. I look forward to the refraction tests, and hope to see a clearer future ahead of me!
Ollie
Check Up (21/05/2018)
Had my first check up since keratotomy surgery today, and it went well.
Astigmatism has dramatically declined due to incision surgery. Went from 6.6 down to 2.1. Wounds are healing up as expected with another month or so left to fully finish off. They now want to try glasses due to my intolerance/their reluctance to trying lenses. They're pretty confident that glasses will most likely work this time. If not, then more surgery will be needed (which is not the end of the world).
Right eye is behaving itself for the meantime.
But also, I have stopped taking my anti-rejection eyedrops for the last week and a half and haven't seen any symptoms so that means my eye has accepted my cornea for now! Feels good not having to put in steroid eyedrops every-day.
The future is positive!
Astigmatic Keratotomy Surgery - 12/04/2018
Hi all!
So back on Tuesday morning (10/04/2018), I underwent cornea incision surgery to help point me in the right direction of possibly, but most likely, having laser eye surgery. As for my last two surgeries (CXL and DALK), I wasn’ t nervous until I went into theatre. So I think it could be safe to say that I’m somewhat of an expert at this now. Just need to master the not-getting-nervous-at-the-start.
My Tuesday started off incredibly early. 6am early. I changed into my day surgery clothing which consisted of a pair of jogging trousers, a basic white shirt with a nice floral pattern on the sleeves and one of my grey jumpers. I was pretty much ready to go! The family and I set off for a McDonald’s breakfast (by we I mean just me... on my own). Very tasty, and by the time I was finished with it, we had arrived at the hospital. We highly underestimated our timing because we were very early. So early we had to wait for 30-45 minutes for the actual eye day surgery unit to open for business.
One thing that was quite weird is that although everyone goes to the receptionist to sign in, you are actually told to sit down anyway and wait for your name to be called out. So I sat down for about 15 minutes and my name was called out, went up, verified and updated some personal information, and was sent back to my chair. Then one of the consultants wearing their surgery uniform came up to me, briefed me on what was being performed that day, the risks, the usual stuff they have to tell you before you sign the consent form, and that was that. I was on my way towards something that has been in the making for well over a year.
I was then called up by a nurse who again made me verify my information, all my personal needs, health problems that they may need to know, and also more information about next-of-kin and how I would be getting back home. And was once again sent back to my seat... UNTIL I was called up again by my consultant who had a look at my eye. Another weird experience that I had was I believe he drew on my cornea while he was looking. At least I think it was a pen. He numbed my eye, and then very carefully drew a line of my cornea. I have to admit I was gutted when I went to the toilet before being called in for surgery to have not seen a Picasso piece on my eye. But you can only do so much.
So I was called in, put on my fashionable shoe covers and hair net, and I walked to the same old anaesthetic room that I’ve been in twice, laid down on my operating bed while they dowsed my eye in local anaesthetic, and I was wheeled in. The anxiety started skyrocketing at this rate, but luckily it didn’t last a long time.
The con that I did have to go through was the bright lamp I had to look up to. It was incredibly bright. I don’t normally moan to my eye team about stuff, but when I do, it’s only because it really is unbearable. And they dimmed the light for me, which was still bright, but not like looking-at-the-sun bright. It was more tolerable.
Then... It was done. Literally, after only 10 minutes in theatre, they finished it and I didn’t know it. I honestly thought they were just drawing on my eye once again, but it turned out they were doing the incisions. So I was wheeled out of the theatre, and was helped out of the bed, offered a wheelchair back to the waiting room, but I insisted on just walking back. I don’t like making a fuss out of the staff. So I waltz back into my family who was happy to see me and shocked at how quick it was. They commented on how red my eye (which I will include of photo of, it’s the second photo), and I did feel a tad lightheaded. After some discussion with the nurse about what to do what meds and new eyedrops, I was discharged.
And that was my day.
Just two days after my surgery, I hardly feel any discomfort, and I’m almost back to normal except I still feel exhausted and feel like I can’t do as much physical activity as I want. And I still have to take it easy for the next two weeks. Which sucks. But the consultant’s advice is the best.
So I hope you enjoyed this somewhat rushed blog of my experience, and if there any questions, please feel free to private message me!
Ollie
Date for Incision Surgery
As always, sorry for the lack of blogging on this page. But for the past year or so, there hasn’t been much progress or anything.
Until now!!!
I finally got a date for my incision date to fix my astigmatism in my left eye which received a cornea tissue donor back in 2015.
Although this is still baby steps, it’s definitely a point in the right direction. I can’t wait to, hopefully, start the path of getting better eyesight. I am missing doing some of the basic things in life without either not having that good enough eyesight to see, have headaches from all the eye-straining I have to do and etc, etc.
I have forgotten the exact name of the procedure I am having, however, I did find a YouTube video (NSFW and not for the squeamish) which should give you the right idea of what they’ll do. If I’m correct in remembering, the average incisions my consultant has made to his clients has been around 2. However, for me, it’s probably going to be around 6. Ouchhhh!
But anyway, the future is bright, and at least some positive stuff is about to start.
Ollie Storey was diagnosed with an eye condition called keratoconus. At the age of 19 he received a cornea transplant. Subscribe To "NHS Organ Donation" Chan...
Hello all,
The interview that I did for NHS has been uploaded to YouTube for you all to enjoy the site of my ugly mug! But all in good to spread the word about how amazing the NHS, and the person who donated their cornea, have been to me!
O X
P.S. If you haven’t already, please sign up to the NHS Blood and Organ Donation register if you haven’t already!
Glasses/Contact Lenses Appointment - 26/07/2017
Before I start off this post about my recent appointment trying to correct my vision, I did happen to go hospital the week before in the form of an emergency one. I was experiencing very painful headaches. So this leads to me going in, but the pressure in both my eyes was apparently okay, and the onboard eye expert said it could be the eye drops making some trouble, in which to just try and relax as much as possible, and use moisturising eye drops whenever possible.
Anyway, here’s the main blog:
Yesterday, I had an appointment to see if glasses/contact lenses would help with the severe astigmatism that I have after my cornea transplant.
All I know about the astigmatism is that it’s very severe. Glasses COULD help with my vision, but as I do have one good eye, the glasses would consist of one thick lens and the other being normal. This would cause some problems with my brain trying to understand what’s going, thus confusing, and then thus making it a very difficult job to try and tolerate it. So the glasses are a no.
EDIT: Glasses would be a no for me anyway because, apparently, my pupil doesn’t contract as well as it should, as thus have a larger-than-normal pupil. <insert bowie eye reference here>
We did try contact lenses, but the ones that the lovely ladies fit in were a tad tight and were very uncomfortable. So my contact lens specialist said that we’d have to go back another time while she orders some more lenses, but did say that the lenses would likely not improve anything. Which would mean having incision surgery to fix the astigmatism. YAY MORE SURGERY YAS!!! I say that with sarcasm, obviously.
I don’t know when I come back to try out the new contact lenses that are being ordered for me, but the next time I definitely know I’ll be back with my consultant is late October.
Hospital check up appointment - 29/06/2017
Hi all,
As of writing this, I had my check up.
To cut a potential long blog short, the usual check up and scans happened and I finally went and saw my consultant.
The vision on the left eye is improving. With still some hazing going on from the recent rejection attempt. As it seems that whenever I’m not put on steroid eye drops, the cornea starts being rejected. So, for the time being, I am having to be on them for what my team said for at least a year. And as the left eye vision is improving, I will be going back in a few months to see the in-house optician to see if glasses will work. If they don’t, then they’ll start looking at having further surgery to improve the structure of the cornea. LASIK basically. Or possible incisions.
Just before I was about to voice concern about possible degrading of vision in my right eye, my consultant said that as he hadn’t seen the right eye for some time he’d check my notes and see if the scans indicate anything. And they did. Minor progression of Keraotoconus. Considering my CXL surgery was well over 2 years ago, and only minor progression has come out of it, that surgery did the job quite well. But 1 more cross linking is needed to try and halt the rest of the progression.
So I’m back in 2-3 months about glasses and then back in October to see my consultant again regarding the future in which I undergo surgery.
A bummer yes that I need more cross linking, but from one personal experience of it, it did the job well. And despite it being extremely painful, it was well worth the torture. I know a lot of people that didn’t have any pain or just mild soreness, so please just assume that my painful experience was just merely a bad reaction to the surgery on my part.
The future is somewhat bright. It pushes some goals further away, but sometimes you have to worry about yourself before doing what you want to do. I want to go back into my music, but, as always, is on hold for the meantime.
If any of you have questions regarding my past cross linking or whatever, please do free feel to message me.
Have a good day!
Ollie
Removal of All Stitches & Another Minor Graft Rejection (Hospital Appointment Update) - 08/03/2017 & 17/05/2017
Hi all,
Sorry for not updating this blog as much as I should be, but to be honest with you all, not a lot has gone on. I have spent most of my time since the post forgetting that I even had eye problems. It’d only be until people brought it up and asked that I remembered again.
One thing that I did do was an interview for the NHS Blood and Transplant Department. I’ll be doing another post about that once all the material is approved and, hopefully, sent out into the world.
Let’s start with the first appointment.
March 8th ‘17:
It’s the same old, normal routine, various eye tests and scans. HOWEVER, the one unique thing in this appointment was that I’d have all remaining stitches taken out on the day.
I won’t bore you all with the minor details and such, but let’s just say that it all took but 45 minutes to cut and pull out around 8-10 stitches that we still in my cornea. Painless but tense, but nevertheless went through it without a hitch. Well... Apart from one part where I accidentally flinched and it looked like I lunged right into my consultant's forceps. But nothing bad came out of it. After that was all out of the way, I was told to expect the process of trying to improve the vision even better as it was still not good.
I was then sent home and I rested for the remainder of the day.
Onto the next appointment which was this week...
May 17th ‘17:
Again, the standard routine of the eye tests and scans. I see my consultant, which was a bit of a surprise as I had been expected to see my contact lens expert, but nevertheless, I and the Mother walked into his office.
Instead of immediately looking through my eye with his slit lamp, he asks if he could try a little experiment. I obviously agree and he goes and fetches this large wooden briefcase, which when opened, showed off a huge amount of lens inside it. He starts combining some of them and then proceeds to ask me the standard questions whenever you do an eye chart test.
What was weird was they weren’t standard lenses as per say, but whenever he twisted the lens cap, it would sway side to side, obviously trying to amuse my eye. But, like me, my eye was very stubborn and didn’t want to do anything with this test.
Thus then, I find out I had astigmatism. It’s a fairly common thing among us humans, and I’m sure something that is very common when you undergo a cornea transplant.
He then proceeded to check my eye like the normal way he does, but much to his dismay, he saw minor graft rejection in progress. ANOTHER ONE?! WHEN WILL I GET A BREAK? Well, the question to that answer is never. I did sign up to this, so I can’t really complain.
But I do however feel a bit foolish as I did have some stabbing pain and a sore eye for a couple days, and I hadn’t realised that was warning shots to me that something wasn’t right. But we all live and learn. So I was told then that if even it’s a small thing, to ring them and explain the symptoms and go into them as I was a high-risk case. So, again, lesson learnt.
So because of not me going into the hospital when I should’ve, I am back onto steroid eyedrops and following a strict regime. The drops I am taking are called Dexamethasone Sodium Phosphate. They’re a lot gentler than the ones I’m used to having, but they do however have the inconvenient feeling of stinging when I have them (speaking of which, I just had to take a drop a few minutes ago as of writing this).
I was on an hourly drop, but that has been downgraded to one drop every two hours. And then when every new week passes, the frequent amounts of drops needed are less and less.
As I do have astigmatism in my left eye, it does mean that they’re looking into having what I believe is LASIK laser eye surgery to fix the problem. Yay, more surgery. But no, seriously, I do forward to seeing (pardon the pun) how this surgery could help improve with my current redundant eyesight. Now if LASIK surgery is on the NHS or I have to go private, I don’t know, but I’m sure that will be discussed when I go back there next month.
I do have to say that my Eye Clinic team are an amazing bunch of people that do so much for so many people. I can only hope one day to repay back their hard work.
That’s all the updates I have really.
I hope you all have a brilliant, rainy (where I am), week.
Ollie
Minor Graft Rejection
Hi all,
Here is another update for no-one to read. I hope you, the reader, enjoy it:
Just a week after having 5 stitches of what was 14 stitches, I started noticing that my eye felt very more fragile than normal. There were times that I found it very hard to keep it open as it didn’t like how bright it perceived the light. I didn’t bat an eye (pardon that intended joke) until I realised that my eye didn’t like it whenever I put in lubricating eyedrops, and would actually react badly to it.
So skip to a few days later and it’s Christmas Day, and my eye is completely red and raw, and very comfortable. So I decided that morning to give it a couple more days, as I know it being the day it was, some people were more VIP to be seen to on C.D. So my family finally has the chance to call the eye clinic and they sounded very concerned. I didn’t know why, but they insisted that I come in and be seen immediately.
I’m not sure which date I went for the emergency appointment, but we went nevertheless and... There was no-one there. The staff were there but in less quantity, but hardly any patients waiting to be seen. I have never seen it that empty before, but obviously, emergency doctors and staff were there waiting for that you-never-know case.
We waited ten minutes before being called in for a quick eye test, which was the same as always, and put into a different, smaller waiting room to be seen by a doctor/consultant. After five minutes, my name is called and I am examined/questioned about my problem. The doctor asks about when I had the surgery, why it was needed, when was the last time I went to an appointment, what meds I was taking, etc, etc etc. After some good time look at my eyes, testing the pressure and looking around with a slit lamp, he blurts out “Your cornea is being rejected!”. It was all a bit out there, but it didn’t surprise me that this appointment wouldn’t be as easy as the others.
After some more questions and answering them, I was under new eyedrops and instructed to take them hourly for the next week until I was seen again by the proper Eye Clinic team. By now I obviously knew they were pretty worried, and so should I.
So I stuck to this regime of taking them hourly for a week, and then I was seen a few days after the new year rang in, and the same old stuff happened as usual, and they were very happy with what happened last week. My consultant reminded me how lucky I was to have decided to go in when I did, otherwise, the situation would’ve been a lot worse than it was.
As there weren't any new talks of rejection, I am going to assume that the eye isn’t rejecting the cornea, but I am still taking my eye drops six times a day until I am next seen to have my stitches removed at the end of January.
That is all the updates I have about my eye! I will write another update in the next few weeks to talk about the rest of the stitches being taken out. I am very excited, but let's hope the rest of this journey is as smooth as possible.
O.
Hospital Appointment - 5 Stitches Taken Out [12/12/2016]
Hi all,
So today was my last appointment at the hospital for the year, and I’m glad that it ended on a good note.
I arrived at the clinic at around 10:30 and do the usual routine of waiting and then being called, reading a chart, waiting again, being called again and then having my eyes scanned, and being made to wait again. All in about 45 minutes. This time it’s a lot busier than usual, I presume because of Christmas and everyone having their appointments before the end of the year.
I am then eventually called again by the contact lens specialist who checks the pressure and overall state of my eyes and he’s happy with what he sees and then walks out to talk to my consultant who handled my surgery and they both come back in and my consultant examines the eyes himself, and concludes that 5 stitches need to taken out today. I was a bit nervous although I had 2 taken out already, that experience wasn’t very good as my eyes decided to be extra fussy and resist against the eye numbing drops, so I could feel most of what was going on. But, luckily, this didn’t happen this time ‘round.
So I had a few more eye numbing drops put in my eye and then rushed to another room to have these stitches taken out. This experience was a lot nicer I can say. All done within 10 minutes. The team originally wanted me to go on surgery day to have the remaining 9 stitches taken out, but as they were very pleased with how still I was throughout the removal of the stitches, they’re confident enough to want to do them in the clinic rather than in the theatre. So I’m pleased that I won’t have to prepare for any surgery again. But I won’t keep my hopes up anytime soon, just in case.
Today was a lot nicer experience, and I look forward to having the rest taken out, as my consultant said: “The real fun will start then”.
The photo that you see was taken around 2 hours after being done at the hospital, so please do excuse the orange stain that’s around the eye as that’s the eyedrops that leaked. You can see where the remaining 9 stitches are (if you can’t they’re in the right hand of the cornea with a loner one on the left-hand side). And yes, there is a tiny bit of blood at the top, but that’s nothing to worry about. It was a cool experience to have the eye colour change to grey for an hour or so, but at the moment of writing this, it’s a very weird dark green colour.
This probably my last post before and after Christmas and the New Year, so I wish you all a Merry Christmas and a Happy New Year!
Eye Appointment Date Changed
Hi all,
As I just updated my Tumblr with how my emergency appointment went, I just wanted to update that my appointment that I was meant to have in a couple weeks times has been delayed to December (one week before Christmas to be exact) so I guess it makes sense, and that when I go I can give everyone in the department presents. They do work wonders. I’m not too bothered about the change of date, in fact I feel like happy to be honest.
But bring on December! Christmas and eyes ‘n’ shit!
Ollie
2 Stitches Removed
Hi all,
Sorry I didn’t update you all on this as soon as possible, but I was out of the country enjoying myself, returned back and only just realised I didn’t even write about the experience of having 2 of my eye stitches removed in my emergency eye appointment.
On Friday 26th August, I went to the hospital for an emergency eye appointment due to having some discomfort in my eye, which it came to the point where it was unbearable.
So I arrive at the hospital first thing in the morning (they like to make my appointments very early) and I have the usual tests, the reason why I made an appointment. I then saw a junior doctor due to my consultant being away at the time. But we ran into a problem. It looks like my eyes are starting to build a resistance to the numbing eyedrops that they put in to obviously numb my eyes. This normally takes one eyedrops for it to fully numb and then start with business. But for some really weird reason, it would take SEVERAL drops until I stopped feeling anything in my eye.
Due to the constant problem I had with the eyedrops, I had to brave it out and just let them do their work, no matter how much my eye tried to make life annoying for me. It took another eye specialist (the one who happened to try help in my failed attempts of fitting scleral lens) and it turned out two of the stitches were wobbly, indicating that they didn’t want to be in my eye. So I was rushed out to the waiting and told to expect having them removed within the next hour or so.
Just as a prisoner walked into the Eye Clinic with 4 huge officers, one on each side of him, I was called by yet another eye specialist to come with him, looked at my eye and told me that he’d be taking the stitches out.
Now, no matter how much I tried Googling or YouTubing this, I’ve never seen how they took out the stitches, but how they do it is remarkable. While he looks through the eye examation machine, with the thinnest tweezers I’ve ever seen, he started poking (jk) my eye with grabbing the stitch to pull it out. Like what I mentioned, my eyes have built a resistance to the numbing drops, so I could feel this happening, so my reflex was to move back and keep apologising to the specialist while he went out to get a new pair of tools. After several eyedrops, my eye eventually numbed so he could continue with this work. The first stitch wasn't that bad, I didn’t feel a thing. But when he went onto the second one, I started feeling incredibly sick. But he pulled it out very quickly, so the feeling went away quickly. But my eye started watering up, feeling sore and going back to feeling a bit sick. After that, he gave me a prescription for some antibiotics and sent me my way.
Afterwards I had a breakfast at Morrisons, needed some help getting back to the car because I couldn't open my eyes, so I went home, straight upstairs to bed, and when I woke up I felt so much better.
So it’s been a month on the exact date since that appointment and my life has been improved greatly. I no longer feel sensitive to light or have any discomfort. It’s amazing to think what problems incredibly thin stitches can do to your life. But upwards and onwards.
I have one more update to do before I head off to bed, but enjoy the rest of your weekend everyone.
Ollie
Emergency Appointment
Hi all, There hasn't been much to report on until now. The last couple of weeks, I have been suffering terribly due the hot weather, and with hay fever being an enemy, my left eye has been swollen and even times difficult to keep open, and with it being more sensitive to light. But fear not, I have booked an emergency appointment with the Eye Clinic and will be seen to within the next few days and will update on the situation. But from the sounds of it, they're very worried. Hope enjoys this lovely weather, and be safe! Ollie
300 days since my cornea transplant surgery. Despite the weather being hot, and making my eyes sore, it’s doing pretty good.
Appointment for October
I finally have a date for my next hospital appointment and it will be in late October, in which, hopefully, I’ll be discussing about having further eye surgery to remove the stitches in my cornea. The future looks bright!
A little late night #surrealism 👁 #gouache and colored pencil on paper #seeingdouble #doubletrouble #drawing #painting #art #eyes
