Tag Archives: Moorfields

2 Months and Nearly 3 Weeks Since the Graft

23 Sep

Just a quick update to let you know that everything has still been going really well.  I haven’t (touch wood!) had any problems with the grafted eye and at a follow-up appointment in August Mr Larkin told me everything is looking exactly as it should be.  I am still putting in the drops every 4 hours & I’m not sure when this will reduce again.  I’ve got a follow up appointment in October.  My eye looks really great, no redness at all now and most people who know I have had a graft can’t tell which eye I had done!  Over two months on and I am back to working as much as I need to on the computer with no problems which is great.

The vision in the eye at my last follow up was not as good as it had been at the previous follow-up – apparently this is normal though as the eye settles and the vision can vary day to day.  This is why they don’t fit contact lenses or glasses before 3 months, which completely makes sense as the vision is changing so much at this stage.  It’s been a bit of a tough year this year for me medically but as far as my transplant has gone things could not have gone more smoothly and for that I’m really grateful.

I’ll update again after the next follow-up.  Take care,

Emma x

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3 weeks post-graft – A&E but all ok

25 Jul

It’s 3 weeks since my transplant.  The last week has generally gone really well, apart from one big drama on Friday night….  Rich and I had taken Magnus for a walk by the river, stopping off for a drink with him at the pub on the way home, later on I was watching TV on the sofa and Magnus came up too.  He accidentally hit me in the grafted eye with his paw.  My eye was streaming and painful.  In the end, after a bit of a panick we decided to go to A&E to get checked out.  It was about 11:30pm so the idea of heading to the hospital at this time wasn’t much fun but I was really worried that I had done some damage and also worried about rejection.  I got to the hospital and went to reception, I’d taken in my paperwork from MoorfieldS so they could see when I’d had the graft and all the other info.  Within about 10 minutes I went into triage and then she took me straight through to the a&e ward where they checked my vision – amazingly I could read the 4th line down on the chart, despite the knock to the eye – Wow!  After seeing the nurse, which was kind of funny as she was asking if before my corneal transplant my vision had been good (I then had to explain that the reason for a corneal transplant is because the vision is not good!), I was told to wait on the ward.  I was then seen by a Dr within 20 minutes who gave me anaesthetic drops in the eye and then looked into the eye and said that although I had had a trauma to the eye from Magnus’s paw the cornea hadn’t been damaged – so so relieved.  He gave me 2 lots of painkillers and said I could go but to go back to the eye hospital on Saturday if I still had pain.  We got home at about 1am and went straight to bed, when I woke up on Saturday everything was fine and I want in pain.  This was really really lucky and it has made me much more cautious not to get knocked by Magnus.

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Other than this everything with my eye is really good.  I have driven as I was told by the specialist that my right eye is good enough to drive with.  I’ve not had any pain in the left eye and the blood-shot area is going down (although it did spread more centrally after being knocked by Magnus).  All is really good though and I am loving the sunshine – I wouldn’t have said this straight after the op when I couldn’t have even had the curtains open!

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2 weeks post graft – A Drop Drama!

17 Jul

I can’t believe it’s nearly 2 weeks since the graft!  The weekend was lovely and I felt so so much better than the weekend before.  It’s only when you feel better that you can appreciate it and think how you weren’t feeling great before.  Looking back I was a bit of an emotional wreck the weekend before and was crying for no reason – that was definitely the stress of the op catching up with me, plus a lot of tiredness I think!  This weekend was great though and I managed to have a normal weekend, and went to the pub for lunch on both Saturday and Sunday – things are definitely getting back to normal!  My eye is still a little bloodshot in the corner but other than that its looking good nad  Rich says its less swollen.  I can also by outside now or near to the open windows without glasses on.  On Sunday night I decided to sleep without my eye shield – although Mr Larkin told me last week at follow up I didnt have to wear it anymore I did keep putting it on at night as my eye felt safer with it on as I was worried about knocking it in my sleep.  I’ve slept without it the last 2 nights though and that’s been fine.  I;’ve just realised i never posted a picture of the now un-needed shield so I’ll do that tomorrow as its good to see it – I had imagined it would be much bigger.

Yesterday was all a bit of a drama.  I was in the kitchen when Magnus the puppy came in with my Anti-rejection drugs in his mouth.  He;d managed to swipe them from the table in the living room and had eaten the label and pierced the bottle with his teeth and swallowed the contents.  He was hicupping and had the liquid over his mouth.  I was so panicked, and called the vte straight away.  They got the vet on duty to speak to me but after taking all the details they luckily said he would be ok.  Th problem was then me having no eye drops and at this point being ready for my 2 hourly drop.  I called Mr Larkin’s secreaty but she was out of the office until today, I called Moorfields but they weren’tvery helpful and just said I should call my GP and say I was running out.  I called my local GP in a bit of a panick and they issued me an urgent prescription so everything was luckily fine, but it was a stressful half hour.  The moral of the story is to definitely ask your dr or hospital for a spare bottle of drops incase anything happens to the bottle (And to keep Boxer puppy’s away from the eye drops). 

My eye’s been a little scarcty the last couple of days but I wonder if that’s been due to me doing lots and probably not resting enough!  Today I went into London for a meeting, my eye was fine just a little bit sore when I woke up but it got better as the day went on.  I was fine in the meeting without sunglasses on although I wore them at Oaddington station and on the tube as it was really busy and I was paranoid about being knocked in the eye.  Tomorrow I move to drops every 4 hours instead of every 2 hours which will be nice – Ill keep them locked away from Magnus from now on!

*PS I am writing wihtout any lense in my right eye and I cant seevery well at all so I will spellcheck in the morning, aplogies for any mistakes

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6 days post graft – 1st Follow Up Appointment

9 Jul

What a great day!  I travelled in to London today for my 1st follow up appointment with Mr Larkin.  My eye was feeling good this morning, the soreness from yesterday was gone after a good nights sleep.  The train journey is was fine, although I kept my glasses on as there were a lot of people on the train and a lot of umbrella swinging.  Mum and I had a lovely lunch near Mr Larkin’s office and then went for the appointment at 1:45pm.  And things couldn’t have been better!  Mr Larkin checked the eye, asked me to read the snellen chart – I could just about read the 3rd line down!  Then he put in an anaesthetic drop into my eye and then checked the pressure of the eye (not painful and I didnt feel anything).  He said that things couldn’t be any better and everything was looking just as it should, which is great news and very reassuring!  He also said that I don’t need to use the antibacterial drops anymore (which I was putting in every 4 hours) and to continue with the anti-rejection drops every 2 hours for the next week and then change to every 4 hours for the next 3 weeks.  I’ll see him next on the 10th August.  He also said, to my surprise, that I don’t have to wear the shield at night anymore, I can swim and I can get my eyes wet (amazing news as I can wash my face properly).  I had thought this wouldnt be possible for a while – what I’d read online had suggested that you can’t swim for at least a month and couldnt get your face wet for 2 weeks…but he is the specialist and I guess as I learnt from them telling me not to wear an eye patch, things change and what you read online is not always correct in your situation.

So all in all it was a great day, I’m feeling so positive and pleased that I went ahead with graft.  I was a little tired when I got home so took it easy for a while and then took Magnus for a long walk. A couple of people I see dog walking asked to see my eye and they were really shocked how good it looks – apparently they couldn’t tell I had done anything done.

I also asked about writing a letter of thanks to my donors family and they said that I can definitely do this – I just need to send them the letter and they will send it on to the donors family.  I’ll write this tomorrow – I want to tell them how grateful I am.

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4 days post graft

8 Jul

Things have been going really well since I last wrote.  Yesterday I even left the house to take Magnus for a walk in the park.  In very large sunglasses in the drizzle and spending a lot of the 20 minutes covering my eye with my hand, but still I was out!  Once I got back I was really tired and so I had a nap for a couple of hours and then I was pretty exhausted for the rest of the evening and also feeling very emotional but I guess that is just everything catching up with me and the stress about the op coming up has probably caught up with me.

I had a good nights sleep last night and Rich woke me up again for my drops at 8am….I don’t think I have ever slept quite as much as I have done the last few days, but I’ve decided to relax and go with it.

Today the vision in my eye seemed even less clouded and blurred which is amazing.  I also had less pain and the eye just feels is a little uncomfortable more than anything else.  Pretty much like it did when I had left my lenses in for too long and my eyes were tired.  It was sunnier this morning so I’ve been wearing my sunglasses inside but the curtains were open.  I’ve been out in the garden with the dogs and Rich’s Mum came for Sunday lunch which was really nice and although I was really tired I’ve managed to get through the whole afternoon without a nap….I am definitely making progress!  Oo, other exciting news (although not in normal circumstances!) was that I washed my hair – it was getting desperate and I feel so much better now!

I’ve been putting in the anti-rejection drugs every 2 hours and the antibacterial every 4 hours but Rich does keep reminding me – he’s going back to work tomorrow so I’m going to set the alarm on my phone so I don’t forget

I have my follow up with Mr Larkin on Tuesday afternoon in London and hopefully he’ll be happy with what he sees.  I’m really positive about it and I don’t think I could hope for it to be any better, it really is amazing how quickly things have been getting better.  When I think it’s only 4 nights ago that I had the op and now I am here in no pain I feel really very lucky.

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3 days post graft

7 Jul

I’m feeling much much better today.  I had a really good sleep last night and my eye is feeling so much better now.  I haven’t needed to take any pain killers so far today which is great and the vision in my left eye seems a lot less cloudy.  I’m also feeling a lot less sensitive to light and I even have the curtains in the living room open….so nice to be in a brighter room!

I think I might venture out this afternoon for the first time since the op…with a large pair of sunglasses on of course which might get a few funny looks in the rain.

Here is a picture of my left eye this morning….

Eye 3 days post graft

Feeling better 3 days post graft

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2 days post-graft

6 Jul

Today has definitely been a day of ups and downs.  I should probably point out at this stage that I am not a very patient person!  Last night I was watching tv in the living room, I didn’t have my right lense in (I also have Keratoconus in my right eye and some scarring – but not as bad as my left eye was).  I covered the right eye and was completely amazed that I could actually just about make out a word on the tv with my left eye, which I couldn’t do with my uncorrected right eye.  I was completely shocked at this and ran in to the kitchen to tell Rich, who I think thought I shouldn’t be ‘self testing’ my eyes quite so soon!  Also amazingly I had less glare from the light in my left eye that my right.  After these little experiments I headed to bed at 10pm, and other than waking up at about 4pm I slept until Rich woke me for my drops at 8am.

This morning I was feeling great, no pain in my eye and feeling really positive.  I came downstairs, did a little bit of tidying in the kitchen, went on the ipad for 20 minutes and thought how well I was doing.  My body then decided the remind me with a bump that I have just had a corneal transplant and this was not in fact a normal Friday.  My eye became quite sore and I have felt really sick all afternoon.  I got a headache which I’ve taken ibuprofen and paracetamol for.  My eyes have also been streaming a lot more than yesterday it feels like.  I went to bed at around 2pm until about 5pm where I dozed and then got up to come down to sit on the sofa.  I also think that sitting in the dark doesn’t really help one’s mood!  I guess I got a little carried away with feeling good this morning and was already planning to venture out….like I said I am impatient!  Still things could be a lot worse, and I am feeling lucky to have been able to have the operation. 

One interesting thing that I didn’t mention yesterday was that Mr Larkin said that although I had to have a full thickness (Penetrating keratoplasty) the chances of rejection were not higher than in the partial thickness graft (Still around 5%) and nor were the complications any higher in full thickness.  This was interesting as information on the internet seems to point to full thickness grafts having more complications.

Until tomorrow, Emma x

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1 day post graft

5 Jul

I had hoped to update about the op yesterday but it was quite late once I came back up from surgery so I’ll tell you about the op today.

At hospital pre-op

 

I arrived at the private ward at moorfields at 4:30 yesterday. Once I was in my room the nurses came to take blood pressure, temperature and a questionnaire about my medical history. I was asked about 10 times what eye they were operating on!! (I guess it’s important they get this right!) I then saw Mr Larkin who ran through what would be happening in the op and then was visited by the anaesthetist about that side of things. I was taken down to theatre at about 6:15 where I was put on the bed, made comfortable with my head in a rest and then was put to sleep.

The next thing I remember is waking up in the recovery room, I was in quite a lot of pain when I woke and was given some painkillers and taken back to my room. The pain was a stabbing pain so I told the nurse who then asked me where the pain was!!! Once we had established that it was my eye that was the cause of the pain, in the end I was given morphine for this (squirted into my mouth from a syringe).

Straight after the op (a little out of it!)

At about 9:30pm I saw Mr Larkin again and he said that the surgery had gone very well and that he had had to do a full thickness graft instead of a partial thickness as the cornea at the front of my eye was too thin.

I stayed overnight in Moorfields and the next morning was given drops at 7am, the bandage was removed and the eyelid was cleaned. I was also told that they don’t put patches on patients any more, so my eye has been uncovered since. When I woke up the eye was still painful and sore but the stabbing pain from the night before had gone, so I was given codeine for the pain and put some sunglasses on, even though the room was dark, as I was extremely sensitive to light. Breakfast was a struggle as I couldn’t really see what I was eating!

Rich arrived to take me home at about half 9 and I spent the journey home with a rug over my head because of the light. Since being home, I have been on the sofa with the curtains closed and have been quite tired. Rich has been putting drops in the eye – every 2 hours the anti-rejection drops and every 4 hours the anti-biotic drops.

The pain is not as bad now, the eye has been uncomfortable all day and streaming but now (7:50pm) I’m not in any pain and the eye feels quite comfortable but still watery (I am still on paracetamol and ibuprofen) My vision out of the left eye is cloudy and blurred but I can see more than I expected to, which is amazing considering surgery was only 24 hours ago. Sorry for the rambling nature of this post, I am dictating this to Rich at the moment!

Eye this afternoon….

Eye 1 post-graft

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The Big Day (Day of the Graft)

4 Jul

I’ll be leaving in a couple of hours to go and get the train in to London.  If I am completely honest I am starting to feel pretty nervous, so I am catching up on some emails and took Magnus for a long walk with some of his friends in the park.  He loved it.  I’m taking him out again soon so that he’s tired out whilst he’s home alone when we’re at the hospital.

Last night my eyes seemed to want to remind me why I am having the graft.  Both of my eyes really really sore and I had to take my lenses out early evening.  I struggled in the kitchen and Rich had to clean up as I couldn’t see anything.  Rich then tested out my vision without lenses in a very scientific manner (ha!) – how many fingers am I holding up, I scored 0/10 in that game even when he was pretty much right in front of me, so I guess this operation is the right thing to do!

One great charity that I found yesterday when looking for Audio Books is Listening Books (Patron is Stephen Fry) which provides an audio book library service to people throughout the UK who have impairments.  I called them yesterday to see if I qualify for the service and they said that I definitely do, so I am now all signed up and can access 1000s of audio books from my computer which will be so useful whilst I can’t read much.

I’ve had some food and now can’t eat again until after the operation, and I’m drinking lots of water as I can’t drink anything past 2pm.  I’m going to go and pack my bag ready to stay over night tonight.  Most important I think will be my ipod so that I can listen to some music tonight.

So this is it, and my next blog will be post-op!

Emma x

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2 days Pre-Graft

2 Jul

It’s 2 days until I head to Moorfields for my corneal transplant. I called Mr Larkin’s secretary last week as I was not sure if I was having a partial or full thickness graft – I’m not very good at asking the right questions when I have my appointments! She said that it should be a partial thickness unless anything is found that means I have to have a full thickness, so now I know. I’ve also received in the post all the information from Moorfields about what time to arrive etc. I need to be at the hospital at 4:30pm on Friday and the surgery should be at around 6:30pm. Because it’s a General anaesthetic there’s no food after 12 noon on Wednesday and no water after 2pm. I’m not too nervous about the general as I’ve had a bit of an unlucky year heath wise so this will be my 3rd general in the last 7 months, and so I am getting used to them (not out of choice!).  I’ll be staying in over night on Wednesday and then I’ll have a follow-up appointment on the ward on Thursday morning before Richard brings me home to Windsor.

I found this great link on the blog of another Keratoconus sufferer who had a corneal transplant, have a look at the pictures to see some examples of how us Keratoconus sufferers see – click here.  I get a lot of these symptoms, ghosting, double vision, glare and problems with my vision at night.  My night vision was what made me realise most that my sight had deteriorated, as I reached a point when night driving was not possible after a pretty terrifying drive from Hereford to Windsor.

I’m feeling a little bit nervous now, but I’m trying not to worry too much. My birthday was yesterday – the big 3-0 and I had a great party at home on Saturday. Being really busy with all of that has stopped me really thinking about the operation too much and it’s only today that I have really had a chance to think about it. I’m thinking about the donor and their family a lot at the moment and I’ve just called up the BHSBT – Organ Donation information line to check if it is possible to send a letter of thanks to the donors family. In their FAQs it says that this is possible but the person on the phone wasn’t sure so someone will be calling me back to let me know. I am hugely grateful already to this person, and I feel very humbled to be receiving this donation which will really help my vision. I also feel sad today for the donor’s family and friends, as I have read that it takes a number of days to process the donated cornea so I am thinking about their loss.

I’ll be updating this blog each day now and I’m hoping that it will help anyone who is going to be having the same operation to know what to expect.  I’ve found blogs online very helpful in the run up to my op, so hopefully mine can help other people too.  If you have any questions at all for me I have set up an email address emmascornealtransplant@gmail.com.

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