graft waiting lists

[sarah.w]

Hi guys, i hope you are all well in this snow!

I had a graft in my left eye in 2003 when i was 15 and since then have worn sclerals which have given me great vision compared to my near zero vision without them. I have had 2 hydrops episodes in my right eye which has left thick corneal scarring and has stopped me wearing my scleral in my right eye as the vison is so poor and cloudy. I am currently just working off my left grafted eye which im finding pretty tough as im working as a physio and am only managing a couple days a week due to my eye fatiguing so quickly. I have put myself on the graft waiting list ,however i have been told by bristol that it is a min 12 month waiting list! i was pretty shocked at this as i thought it was about 6 months. From reading other posts i have seen it is a lot less in other parts of the country. Do you think it may be worth me registering with another hospital? Im only 23 and just beginning my career so im eager to get going as the longer i am off work the harder it will be later on for me to find work especially as i would like to work in australia but i need a full working year here first.

Any advice would be a great help

Thanks so much for all your help, sorry for the ramble....

hope you are all having a snow day off!
sarah xx

[Anne Klepacz]

Hi Sarah
I'm surprised the waiting list is so long in Bristol, given that the corneal eye bank is located there. But of course, that doesn't mean that Bristol gets any priority over other hospitals. I'm not sure whether you'd do any better registering at another hospital, as I imagine that each hospital prioritises its own patients, though it might be worth asking. Another thought - I think some hospitals have a list of people who would be prepared to come in at very short notice if another patient has to cancel their op for some reason. If you're in a position to do that, it would be worth asking Bristol if they have such a scheme and putting yourself on that list. Good luck.
Anne

[Loopy-Lou]

I don't understand why some hospitals have longer lists than others, at Moorfields it's 3-4 months

[sarah.w]

Thanks for your reply guys i phoned plymouth, torbay and bristol hospital and its all the same due to the lack of corneas being donated, the waiting list is min 12 months, so its not even worth me changing hospitals! It is so sad there is a lack of donors apparently people are just not donating any more, i can understand it can be a tough decision but can it changes lives - many of us are evidence of that! This news spured me to phone the organ donor organisation and i am going to try and have something put in the western daily press to try and promote the need for corneas and general organ donation awareness, i hope it helps!

Thanks for that advice Ann i am now on the emergency list in the unlikely event someone withdraws from surgery!

xx

[Anne Klepacz]

Sarah - that's brilliant that you're doing something to publicise the problem. The shortage of corneas has clearly got to be a real issue. I've just spoken to a Moorfields patient who has also been told 12 months, whereas, as Lou says, it used to be 3-4 months. Sounds like something we all should be agitating about. Publicity about organ donation (of which there's been some recently) tends to concentrate on the life saving organs like hearts and kidneys. But donating corneas is also important with so many young people's lives affected by sight problems.
It's good that you're now on the emergency list. People do have to cancel their operations at short notice - a bad cold is enough to mean that they may not be able to have a general anaesthetic. So fingers crossed that your wait may not be so long.
Anne

[Loopy-Lou]

This is a serious issue Anne, I think we need to do something as a group about this, perhaps writing articles for papers/magazines/radio interviews, an awareness raising event, and speak of what difference it makes which can mean be seeing or not seeing.

[sarah.w]

I definitely think it is a serious issue considering how much this is changed over the past 5 years. From talking to friends and family i gather that alot of people feel squemish about donating the corneas even know they are not alive! Like lou and Anne say it would be a really good idea to get some publicity about this, i will try again on monday to contact the local papers in bristol, exeter and plymouth and hopefully they could run an article for us. I have ordered leaflets too so im going to give out as many of these as i can!

hopefully we can boost the number of people donating xx

[Loopy-Lou]

Yes I've just been speaking to someone on another forum who told me that until she knew me she always crossed off corneas because she didn't understand why they were needed. This is the problem, people don't know where the cornea is located, what it does, the fact that KC is the main reason for neeing grafts and that some times people can be registered partially sighted or blind for a period of time. It may not be' life saving' like a heart, but it is quality of life saving and having to wait longer could wreck people's careers and cause depression. The other problem is people assume removal of eyes after death will mean facial disfigurement and not being able to be viewed by relatives at the undertakers but they can 'fill' the space no problem, it's less invasive than a post mortem really.

I've just emailed Nursing Times and asked them to consider doing an article.

It would be good if members could approach magazines and newspapers, and how about something like Radio 4 Women's Hour Anne?

Perhaps we need a new thread specifially on transplant activism so we can report what we're doing and make offers of support i.e. joint writing/speaking.
We've got to dispel these myths so that people are not afraid to leave their eyes when they register for organ donation.


We could put together a side of A4 which could be printed off explaining about cornea transplants and organ donation, simple, just giving a few facts which any of us could print off and leave at GP surgeries.
How about it guys & girls?

[Anne Klepacz]

Excellent ideas, Sarah and Lou. Radio 4's You and Yours is another possible programme. One of their presenters is Peter White, who also presents the In Touch programme on sight problems. I've just found masses of information about corneal transplants on www.organdonation.nhs.uk including leaflets and posters on eye donation, which unfortunately are out of stock! I'll get on to them and see whether they can produce some more.
Anne

[Loopy-Lou]

Great Anne. The cornea transplantation factsheet can be printed off from their site: http://www.organdonation.nhs.uk/ukt/new ... _sheet.jsp

You & Yours is a good idea, I'm familiar with Peter White. Would you consider doing that with one of us?