UK Keratoconus Self-Help and Support Association

Inevitably members turn to the forum when they have an issue, problem or concern. For those of us that have not have a graft yet, but might need one in the future it would be really helpful to have a range of experiences of those who have gone through the process - particularly when it went well, as you expected, or even better!

How did recovery go overall?
When did you feel you were in a better place than before surgery?
During the recovery period, how long were you compromised in what you could do?
What limitations did you have and how long did they last?
Did you get good advice and support from your hospital/clinic/consultant?

Thanks,

Graham

ow did recovery go overall?
terrible, had a chronic infection for the first 11 months solid which led to having to have anti biotics made specially and used then disposed of n cost the NHS a fortune, trips to eye dept every 36 hours for those 11 months, now 8 years on still get infections very easily especially when the weather changes, had to have a regraft, have had multiple rejection episodes, so those combined with infection have left horrific scaring and sight is worse than pre graft, and was honestly the worse medical mistake iv made in my life agreeing tohave a graft done.

When did you feel you were in a better place than before surgery?
still waiting and graft was march 2010

During the recovery period, how long were you compromised in what you could do?
I have ended up registered as legally blind I now have no option but to use a long cane to give me mobility I was waiting for a guide dog but for various reasons it wasnt the righ time for me when my time to the top of that list came up. I am affected every day by the stupid misinformed decision I made

What limitations did you have and how long did they last?
how long do you have, .


Did you get good advice and support from your hospital/clinic/consultant?
no they told lies, n took a private second opinion to find out just how severe the damage and harm done was

9 weeks in after DALK:
Recovery took around 8 weeks, the main problem was photophobia (never thought I'd be so happy to see an overcast day!) as the healing of my epithelium over my cornea was delayed due to a painful allergic reaction to preservatives in the eyedrops. A change to non - preservative eye drops and a barrier contact lens helped a lot in this respect.

The vision in the graft eye is already better than before - well it couldn't be any worse - and eye tests through the pinhole device suggests that it could get significantly better once I'm able to be fitted for a contact lens

Recovery was a bit frustrating, more so as I had to get a new job for when my sick leave ended but couldn't look at a computer screen for very long even with the brightness right down. I also went for an interview way to early and had to spend the next day dosed up on painkillers in a darkened room. It did seem like I would never be able to tolerate sunlight again but then over a few days it just became bearable and I could go out without sunglasses!

My Surgeon Opthamologist at the QE in Brum has been brilliant all the way through and the support from him and his team has been excellent.

It's early days yet but I am back working. Fitting in the 10 eye drops a day is a challenge but hopefully soon that will be reduced.
Hope this helps.

Space Cadet - so sorry to read of your terrible experiences.

How did recovery go overall? It was good. Within 2-3 days I already could see 20/20 close-up, and a little bit blurry for distance. No complications occured. After 2-3 years I was told to stop taking medications.
When did you feel you were in a better place than before surgery? Within 2-3 days, as I was shocked to see so well again, without all the ghosting, glares, etc. Better than what I could see with contact lenses.
During the recovery period, how long were you compromised in what you could do? Not much compromised, had more to do with the other (non-graft) eye which still sucked back then.
What limitations did you have and how long did they last? Only a little blurry for distance (around -1.00 myopic), but that's because I wasn't prescribed spectacles (I didn't know I could see so good for distance until a year later by accidently putting a myopic-correcting glasses).
Did you get good advice and support from your hospital/clinic/consultant? So-so. I think that the internet was more useful in that regard.

I hesitate to sound complacent but I feel you need a good experience to balance out the comments. I had a graft on my left eye in 1986 and it is difficult to remember the specifics. What I can remember is that I was back working within a week or so and there was an immediate relief in only wearing one contact lens. I had a rejection incident which involved taking a steroid drop every hour, day and night for a couple of days. Fortunately, my suspicions were raised on Christmas Eve and I went to Moorfields before everything shut down. Otherwise I may have delayed my visit with disastrous consequences.
I had my other graft 9 years later.
The benefits were almost immediate, I could function with temporary prescription spectacles on the grafted eye and one contact lens on the other eye and so I was able to return to work. One wearing one lens lessoned the intolerance problems considerably. I was a bit uncoordinated if I just wore the glasses or lens. It wasn't till after the second graft that I realised I had stopped falling over.
My vision is not perfect but within the DVLA guide lines to drive legally and I was able to continue working and living normally.
I realise I am lucky and surgery has risks but after 32 years I am extremely glad that I had the grafts.

May I suggest x2 threads one for positive experience of grafts and one for negative as people need access to both accounts

OK, here I go answering my own question! Rather than write a day by day report, here is the long view.

I had my graft (PK) on 28th January so I am now four weeks two days on. I had been living with significant scarring and the remnant of hydrops from a year ago. Just 2 days after the operation I could already see better than for many years.

I experienced practically no pain. My mobile was particularly useful reminding me to use the steroid drops, 2 weeks every 2 hours, then 4 times a day which will continue for another month, dropping to 3 times a day.

I was reviewed at the hospital on day 3, day 10 and then 4 weeks. I am now due back in 2 months. I am inherently very longsighted but with refraction, I comfortably achieved 6/9 and practically no astigmatism. To maintain some balance with my right eye I really need to get back to wearing a scleral lens. That decision will be made at the next appointment in 4 weeks.

So any anxiety I had is in the past and feeling optimistic for the long term.

At just over 4 months after the graft we opted to fit a scleral lens. I was told the cornea was regular enough to take an RGP but as I already have a scleral in the other eye that did not seem a sensible option. Comfortably achieved 6/9 and a few letters at 6/6. Steriod drops backed down to twice a day and the current thinking is if the sutures are behaving is to leave them in as long as possible.

Glad to hear it seems to be going better now. Fingers crossed it keeps progressing well.