UK Keratoconus Self-Help and Support Association

Hello again,
I feel somewhat guilty that I only tend to log on here when things are going astray! I had my third transplant 5 years ago following the complete rejection of my second transplant that only lasted four months. My first transplant lasted 24 years! This corneal has had many rejection episodes which have been managed, but is is now having a rejection episode which started 3 weeks ago and don't appear to be settling. I have had two steroid injection into the eye, am on hourly steroid drops and 40 mgs oral steroids, my corneal remains waterlogged and thick. I have no useful sight only what I describe as looking through a very thick net curtain.

I have Lupus and am immunosuppressed taking Methotrexate.

I was wondering if anyone had any idea on how long it might take to stop the rejection and more concerning for me the risks of me having to have a 4th transplant?


Sheila_e

Hello Sheila,
I'm really sorry to hear you're having problems with your 3rd graft. As you know from your own experience, most rejection episodes are quite quickly reversed with treatment. Like you, I had several rejection episodes in the first few years after my grafts (left eye done in 86 and right in 88) but they were all reversed and the left graft then lasted 28 years until finally failing last year (the right one is still OK). All I could find with a bit of googling was one article saying that rejection treatment should continue for at least 3 weeks so I guess there's still hope of reversal for you.
The decision on whether to have a 4th transplant if this one can't be saved is a difficult one. I don't know if you're on our mailing list for newsletters - if you are you may have seen this article
http://www.keratoconus-group.org.uk/new ... g_2013.pdf
where Dan Gore quoted an Australian study on survival rates for penetrating grafts (the survival rates for partial DALK grafts are thought to be considerably better). That showed that each subsequent graft after the first tends to have a lower survival rate. Of course, the figures quoted are averages so while the average for a first graft is 20 years, we certainly have members whose first graft is still going strong after 40 years.
I hope that reversal of the rejection will still be possible. But if you do end up having to decide about another transplant, then I guess the questions I'd be asking my specialist include -
would tissue typing the donor material make a difference to the likely outcome?
how do other health problems I have affect the likely outcome?
I've heard that an artificial cornea transplant is possible in cases with a history of rejection problems - is that an option?
For me, the decision to have a regraft in my left eye last year wasn't difficult because I'm conscious that my right graft is probably not going to last for ever. How I'll feel further down the line I don't know. So I guess for you one factor will be how good your other eye is. I think in earlier posts you said you had good vision in that eye so I hope that's still true.
A corneal transplant can be life changing in a positive way for many of us with advanced KC, but as people have said in many posts here, it's never a decision to be made lightly.
All the very best, and let us know how you get on.
Anne

Hello Anne,
Thank you for your reply, it was helpful and reassuring, I am just into week three of the rejection treatment, so will stay positive.

I am lucky enough to have good sight in my rt eye so thats does help, with any decision making re further treatment.

I think my Lupus is does have an impact on my gratfs as it autoimmune.

I have written down the questions to think about and ask if needed, interesting about the artificial cornea.

I will keep you up to date on my progress.
once again thank you

Sheila

Hi,
Saw my consultant today- the rejection has stopped, which is good news, the endothelial cells aren't yet working well enough to clear the fluid from the Corneal.so not much sight yet. Corneal thickness is 695 microns so I remain on hourly steroid drops and 35mg oral steroid tablets for a further two weeks. We talked about the possible need for a fourth graft and he said that they would do a partial thickness graft but wouldn't do anything until this one had completely settled down and my lupus was well under control.

Feeling a little more positive.

Sheila

That is good news, and reassuring that a rejection can be stopped several weeks in. I'll have all my fingers crossed that it's even better news for the New Year and that you start getting some sight back in that eye.

Thank you Anne yes I was beginning to get concerned at the length of time it took for the rejection to be stopped all in all about 5 weeks, and was surprised and relieved when they said it has stopped.

Happy Christmas everyone

sheila

wishing you well Sheila

Happy New year to Everyone

I am not sure thats things are improving as they might- at my last appointment I could just see the top letters fairly close up through a pin hole which is an improvement, The corneal thickness has reduced to 683 Microns not quite enough to have any useful sight. I remain on hourly eye drops, have started new immunosuppressant drug mostly for my Lupus but with the agreement of my eye consultant. I am now tapering off the steroids as the rejection episode has stopped. It's now been nearly 7 weeks since the rejection episode started, the consultant said it was a positive sign that I had some vision through the pinhole, and thinks things will still improve- however I am not convinced that the damaged endothelial cells can recover and start working again to clear the fluid off the corneal does anyone know if they can heal?


Sheila

Sorry, Sheila, I don't know the answer to your question - none of my rejection episodes have lasted that long. But it does sound hopeful that there has been some improvement in your vision already, even if it is painfully slow. So trust your consultant and hang on in there! Wishing you all the very best.

Hi,
I have just returned from the hospital and they have said the graft has failed, have given me three options-
1) keep this graft - no real sight, but I do have a good eye
2) full thickness transplant- would be my fourth one - with two rejections
3) a plastic corneal- Can't remember the medical name.

My consultants preference given my age (53) was another transplant- chances of it surviving 5 years 50%
I asked about Matching and he said they sex match but not tissue Match as thats not been shown to be beneficial.
The Plastic one comes with its own risks and may involve long term antibiotic.
I think my lupus may have an effect on the rejection process as when flaring my immune system attacks my body, and It hasn't been under control for about a year. I am currently starting a new treatment programme to manage the lupus if effective that may help. I am now taking Methotrexate and will be starting Rituxmabin the next few weeks, instead of mycophenolate Mofetil.

I am going to let it all sink in!