Awaiting a corneal transplant

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Gemma
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Joined: Sun 11 Aug 2019 12:58 pm
Vision: On the waiting list for a graft

Awaiting a corneal transplant

Postby Gemma » Mon 12 Aug 2019 8:12 pm

My keratoconus story started when I was 19 I was diagnosed a few weeks before starting my Nursing degree in Bristol. I was given a pair of glasses and a referral to the Bristol eye infirmary. After a few years my sight deteriorated and I was given soft contact lenses which at the time was a revolation and I was able to see clearly for the first time in ages . I passed my degree and worked as a staff nurse until I decided to leave Bristol and move back to Plymouth. I saw an opthalmologist who said the soft lenses weren't any good for my eyes and I needed hard lenses to enable me to see . I went two weeks without lenses which meant I was unable to work in my new job was a very difficult time . I have had the hard lenses the last 15 years with my eyes gradually deteriorating. It has been a constant battle to prevent dry eyes with the use of drops and creams and plugs to the the tear ducts nothing seemed to work and my eyes have suffered and I have been left with scaring to both my eyes. I am at the point now where I have had a hydrops to my left eye which has caused damage to the eye to the point I can no longer wear a lens in the left eye the only option now is to have a graft . I depend totally on my right eye for sight but the sight is deteriorating. I am just about able to drive but my job is dependent on me driving I am also mum to four children so the thought of not being able to see is terrifying. I have been told that the graft is the only option but I am worried that the graft won't take and that I won't be able to continue to work. I would love to hear about how others have managed in similar situations .

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Anne Klepacz
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Posts: 2110
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Awaiting a corneal transplant

Postby Anne Klepacz » Wed 14 Aug 2019 2:52 pm

Hello Gemma and welcome to the forum,
I had corneal transplants in both eyes back in the 80s (2 years apart). After 28 years, the left eye needed a regraft which I had 5 years ago. Most people will need correction with contact lenses or sometimes glasses after a transplant and it's by no means an instant solution as useful vision can take months or more than a year to return. With the left eye (the first to be done) I had no benefit until I could wear a contact lens again so was totally dependent on the other eye for almost 2 years. But I did continue to work full time throughout with just a few weeks off post op and transplants did eventually give me my life back. I did have several rejection episodes with both grafts, but all were successfully reversed with steroid drops. Of the various conditions that may need a corneal transplant, keratoconus is the one that's most successful (my hospital quotes a 95% success rate in KC) in terms of giving a clear healthy cornea. As a nurse, you don't need me to tell you there are never any 100% guarantees with any surgical procedure, but the chances that your graft 'won't take' are very small. Given your responsible job and your family responsibilities you might want to take more time off work than I did. How old are your children? Are they old enough to be a help to you rather than needing everything done for them?
Not everyone who has a hydrops ends up needing a transplant. We have members who have had more than one hydrops but still manage with lenses, though that's sometimes meant a switch to scleral or semi-scleral lenses. I don't know if that's an option for you?
I hope some of that helps. Do ask more questions. And if you'd like our information booklet on KC (written for us by Moorfields specialists) just e-mail your postal address to anne@keratoconus-group.org.uk
All the best
Anne

Gemma
Newbie
Newbie
Posts: 3
Joined: Sun 11 Aug 2019 12:58 pm
Vision: On the waiting list for a graft

Re: Awaiting a corneal transplant

Postby Gemma » Fri 16 Aug 2019 12:26 pm

Hi Anne, thank you so much for your reply. It is comforting to know that there are people like you that have been through this and have come out the other side. It can feel quite isolating at times as I don't know anyone who has keratoconus and is able to understand. I am due to see my consultant today so hopefully he will be able to answer all my questions and I will ask him about trying different lenses. I have really good family support so I am not too worried about the recovery. My eldest child is 13 and the youngest 2. So the older children help out with the younger ones. Thanks for your help .

Waynesworld
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Joined: Sun 08 Sep 2019 5:50 pm
Keratoconus: Yes, I have KC
Vision: On the waiting list for a graft

Re: Awaiting a corneal transplant

Postby Waynesworld » Sun 08 Sep 2019 6:05 pm

Hi everyone. As my message would also be titled 'waiting for corneal transplant' I hope you don't mind if I post on the end of this discussion.
My 19 yo daughter has a 21 yo boyfriend with KC. He has been waiting for a corneal transplant for 8 months now. Of course he could get the call tomorrow, but I would like find out more about it. What it involves, how long it takes, when he could return to work as apprentice electrician. Also, if anyone knows how much a transplant would cost privately, I would be keen to know that. We are not wealthy, but would consider releasing some savings for daughters peace of mind. Their marriage plans are on hold pending this surgery. His parents have no savings, sadly, rent their small home so hand to mouth. We would help if we can, and if they agree to it. Anything you can tell me about corneal transplant surgery I would appreciate knowing. We are Southampton area, he is under Southampton Eye Hospital outpatient care so far. Thanks.

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Anne Klepacz
Committee
Committee
Posts: 2110
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Awaiting a corneal transplant

Postby Anne Klepacz » Mon 09 Sep 2019 11:15 am

Have a look at this link which has a good description of what's involved.
https://www.nhs.uk/conditions/cornea-transplant/
There are 2 types of corneal transplant for keratoconus - a partial transplant (DALK) which involves replacing the top layers of the cornea with donor tissue or a full (PK) transplant which involves all the layers being replaced. (Ignore the information about transplanting the back layer of the cornea, which is for a different eye condition).
8 months is a long time to wait, so I hope the call will come soon. If he hasn't already done so and could go for surgery at short notice, then it's worth asking the hospital to get in touch if there's a cancellation, which might shorten the wait. I don't know the current cost privately but it's likely to be at least 5K just for the operation and then there's all the follow up appointments. Sadly, the problem, as with all transplant surgery, is a shortage of donor tissue.
Do come back with any other questions once you've looked at the info on the NHS site.


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