Tag Archives: Organ Donation

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

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.