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.

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

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

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

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

1 day Pre-Graft

3 Jul

So, it’s 1 day before the op and I’ve just heard that everything is definitely going ahead tomorrow and the hospital have had confirmation of the cornea.  I’m keeping myself busy today walking Magnus and sorting out the house so everything’s nice when I get home on Thursday.  I didn’t sleep well last night as I think I am maybe a little more nervous than I am letting on! 

A few little things that I’ve been thinking about:

1.  I hate sleeping on my back, but while I’m recovering ‘Im going to have to as you can’t sleep on your front or side and there’ll be some time having to sleep with the “protective eye shield”.  I’ll post pictures once I get it but I’m not sure it will be the best nights of sleep, although I’m sure I’ll get used to it 😉

2.  Magnus – our beautiful Boxer puppy.  He’s just over 4 months old, very bouncy and likes to lick me on the face a lot.  I guess that this will have to stop for the time being – I will have to try and brief Magnus before tomorrow that my face is off limits for a while…should be interesting given his lack of obedience! 

3.  The eye patch – I know this might seem ridiculous but earlier I was wondering whether or not there is a market for luxury/designer type eye patches, rather than what I guess would be a standard black patch.  After a quick google I found out that there is definitely a market for this, in fact you can even buy a Swarovski Crystal Eye patch (link is here) for a bit of bling post surgery!!  I won’t be getting one but it did make me laugh as I do like a but of sparkle and everyone would certainly see me coming in this!

Tomorrow I’ll be heading in to London on the train at 3pm, ready to arrive at the hospital at 4:30pm.

Anyway enough from me for now, until tomorrow!

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.