Graft rejection after 44 years

[CARMELTHOMPSON]

Hi,
Has anyone else experienced graft rejection after many years? I had my right eye done in 1979 and the graft, after 2 bouts of the herpes zoster virus in 2022 and again recently, has started to fail. My vision is almost non-existent in that eye, and getting worse, the only way I can manage is by using a scleral lens in the left eye, which had a graft in 1984, and was, up to now, the weaker of the 2. Prior to all of this I used sclerals in both eyes, with varying degrees of success and discomfort. I'm seeing a specialist in a couple of weeks and am on the list for a regraft, hopefully sooner rather than later. I am worried that the left eye, which is doing the work of both eyes, will be affected at some point. Apart from the lack of vision, being unable to drive, acute dry eye and photosensitivity, frustration, and having to work reduced hours, as well as feeling tired and run down all the time, what else can I expect? And where can I go for support? My family think I'm bearing up wonderfully well, when all I want to do is cry or yell at someone! Any info or help gratefully accepted.

[Anne Klepacz]

Hi Carmel and welcome,
I had my grafts in 86 (left) and 88 (right). At the time I was told they would last a lifetime, but medics now know that the full penetrating grafts (PK) that were available then have an average lifespan of 20 years. (The partial thickness grafts that are more often done these days are thought to last longer). So although I know some people who have grafts that are 40+ years old and still going strong, I also know people (like me) who have had regrafts.
My left graft failed back in 2014 and I had a regraft several months later. I was lucky that I had retired by then, but it was still a shock at the time. The regraft was a great success, and from being contact lens dependent after my grafts, I went to the vision in my left eye being easily corrected with glasses. The other eye still has the original graft, but in the last few years it has become misshapen and I can no longer wear a contact lens on that eye. So I'm depending on the regrafted eye. Although it's natural to think that using just one eye puts more strain on it, I think that's actually a myth. So what I'm saying is that there is light at the end of the tunnel! Getting used to the new reality was hard for a while but hopefully, like me, you can expect better things to come.
Do you have a sympathetic employer? Have a look at the Keratoconus at Work information in the 'Living with KC' section of our website for the sort of help you can get. And if it would help to chat to someone who has been there, do give me a ring on the KC Group helpline number (you'll find it on our home page). And/or do come back with any questions here (or to have a good yell!)

[CARMELTHOMPSON]

Hi Anne,
Thank you very much for your reply, it's encouraging to know I'm not on my own, and that there is somewhere I can vent or have a wail! Also nice to know that my left eye will be ok, despite working twice as hard...I think part of my problem is the astigmatism, apparently it's pretty bad and I'm a bit of a celebrity in the local ophthalmologists' circle, the shape of my eyes has never been so interesting! My employer is ok, so far, they have accepted my limitations and I'm trying to work fewer hours, difficult for me because I usually overdo it. I don't know what will happen if this goes on indefinitely, or what I'll do when sick pay ends but for now, all is alright - I have claimed Universal Credit and may apply for PIP once I've had the sight loss for 3 months. Thanks again for your support, I will check out the sections of the website that you mentioned and may call the helpline.

[Anne Klepacz]

I think what does work twice as hard in these situations is the brain, which is having to interpret two very different images from each eye. That's why we end up feeling so tired all the time, especially as the day goes on and the brain gets worse at 'blanking out' the bad eye. Do let us know what happens when you see the specialist. Again, I was lucky to only wait 3 months for a regraft. The pandemic has meant there's more of a shortage of corneas and longer waiting lists. If you can, it's always worth saying you can come in at short notice if there's a cancellation.
All the best, and don't be afraid to vent!

[Anne Klepacz]

Just to add that our West Mids organiser, John Thatcher, is hosting a Zoom meeting for members on Weds 6th September in the early evening. If you'd like to join that, do e-mail me anne@keratoconus-group.org.uk and I'll pass your e-mail address on to him so he can send you an invite.

[CARMELTHOMPSON]

Hi Anne, thank you for the message, that may explain the tiredness, brain strain! On the positive side, I now have the requisite priority, so may get the regraft in the next 2 or 3 months, specialist was very helpful and encouraging, and seems to have started things moving because I received a pre surgery health assessment form today. I did say I could come at short notice and don't mind which hospital I have to go to, which may speed things up. I'm not going to be free on Wednesday, but I'd like to come to a meeting some time, it would be nice to get some face to face contact with members, I'll keep checking the site for future dates.

[Anne Klepacz]

Good to hear, Carmel, that all sounds very encouraging. Keep in touch and let us know how things go.

[CARMELTHOMPSON]

Thanks, Anne, I will.