Question about post transplant/graft surgery

[dalbeath]

If I decided to have a graft/transplant on one of my eyes how long would it be before I could continue competitive horse riding?

Yes ...I know I need to ask my surgeon etc. I have an appointment in a few weeks with him to chat through all my options.

I have 2 International Event horses and compete at a fairly high level. This is not just a hobby I do once a week, it's more a way of life for me. I had the other eye CXL last summer and managed with just a week off riding (was able to pay a professional rider to keep them going), but I realise that this would be a bigger procedure.

Anyone any ideas?

[longhoc]

Hi...

Here's the official line from http://www.nhs.uk/Conditions/corneatran ... overy.aspx:

To quote the most relevant bits (but the full article is quite useful)

•If you have a job not involving physical strain, you can return to work 2-3 weeks after surgery
•If your job involves manual labour, you should wait for 3-4 months
•Avoid contact sports and swimming until given clear advice that it's safe

Not sure to be honest where horse riding fits in that lot ! I'd reckon on it being closer to the "manual labour" than the "not involving physical strain" though. Appologies, not at all what you'd want to hear I guess... Altought I love horses as I do all animals, I must confess that bribing one with the odd carrot is the closest I like to get to them ! Sorry, can't speak from personal experience therefore. There's another lady who posts here who does ride, so maybe they can comment if they see this.

One thing -- the main thing I wanted to say actually -- was that the stability and robustness of the graft tissue isn't really what caused me issues. As fatar760 pointed out in an earlier post, for whatever reason -- and I pin it on the general anesthetic -- your energy levels get hit for six in the post operative period. As in, you can feel like the living dead at times. There's "a bit tired" which I've experienced in normal day-to-day life and there's the "it's only 9 o'clock in the evening, but I cannot even read in an armchair or keep my eyes open to watch some rubbish on TV anymore becase I've got an overwhelming urge to simply fall asleep right now" kind of tired I was experiencing for at least the first two months post-graft.

Even now, I have the odd bad afternoon or evening. And once a week or so I can't even get out of bed at anything like a sensible time (this from someone who used to be able to get up the second the alarm went off at 6 a.m.). But from about 8 ~ 10 weeks after the operation, I've finally got to the stage where there's -- at last -- no bad days or weeks which you just have to write off. But it really did take that long to get back to, say, 80~90% "normal". I reckon on at least another couple of months yet to get to 100%. And then there's the vision, which will be slower still.

The point is, don't be surprised / disappointed if recovery isn't super-quick even if it's for reasons not directly connected to the graft itself.

Best wishes, and good luck.

Chris

[dalbeath]

Hummm ... I live on a farm and my day job is running the farm and doing the sheep and horses so yes, rather a physical job. When I told the NHS hospital where I live and what I do they said "Well we are not wasting a cornea on you! You have the wrong life!"

To which I thought , great. But I had a life before I had KC so if I can deal with it why can't they!

I am so sick of this stupid stupid disease ....why can't it just naff off and go and bother someone else for a while?


PS Longhoc - Pru declined my complaint on the grounds that KC is a chronic not acute condition and that CXL was only ever going to stabilise a chronic condition and not cure it.

[dalbeath]

Hi...


•If your job involves manual labour, you should wait for 3-4 months

How can anyone take 4 months off work?

[longhoc]

Yes, you do wonder about the practicality of some of the advice. That timeframe probably refers to the Full Depth PK procedure rather than the more typical DALK... I think they say 6 weeks off work for DALK and manual work. Still quite a stretch though...

[fatar760]

It's been exactly 4 weeks since my op (it's flown by if I'm honest) and although my energy levels are still very changeable I do feel It's starting to improve. Not enough to go into 7 hours of teaching a day yet - but enough to get by. What hasn't helped, and i think is something to be wary of, is that I caught a viral infection in my chest - which really hasn't helped my recovery.

On Tuesday the surgeon said he was surprised my eye hadn't fully healed and I think the reason is that the body is trying to recover a lot. So, if you do get the op done, try to avoid people with any form of cold or flu symptons (easier said than done)

Is there a union which could help cover the money you'd lose from work?

[rosemary johnson]

How long before I could ride again was one of the questions I asked pre-graft.
The young woman I was talking to wasn't at all sure how to answer - and we agreed that "OK, it's not the riding that's the issue, it's the falling off bit I mustn't do" and was left to get on with it.
In fact, the general anaesthetic so screwed up[ my sense of balance that it was several months before I felt up to trying to ride again -a nd then I felt decidedly wobbly and very lakcing in confidence on a horse.
I am riding again now, and can still get the feeling of being all dizzy and not really knowing where I am if the horse starts either playing up or stumbling on rough ground.
The bigger issue was that I couldn't do anything useful as I couldn't lift much - bales of hay, feedsacks, wood shavings, pushing lafen wheelbarrows up the muck heap .. you ge tthe picture ALl banned, and if I tried too haard to carry much about I could feel the strain inthe grafted eye.
I suspect that it may well depend on how much strain the riding puts on the eye - a gentle three-quarter hour hack would probably be fine (and I tend to potter around very gently!) whereas a BE cross-country course would put much more strain on the whole system, eyes included.
You will probably be able to feel pressure/strain in the eye if you try any sort of too-hard exertion, and know to stop - though half way round the cross-country course is no time to realise that!
ANother thiing - apart from wanting to avoid any stress/strain exertion, you'll no doubt also be told all about the importance ot keeping dirt out of your eye. You may want to ride in goggles for a while (like jockeys do in races), and get some goggles/safety specs for grooming/mucking out etc.
Good luck.
YOur horses sound great - International eventers, wow! Care to tell more>?
Rosemary

[dalbeath]

Thanks Rosemary

I already wear jockey's goggles a lot of the time as I have piggy back lenses in both eyes so find when I am going at speed ie XC or on the gallops I need the goggles to stop my eyes drying out.

To be honest, I think I'm going off the whole graft idea. My right eye (post CXL) is pretty good with piggy back lenses. My left eye is rubbish, it does not really give me any useful sight but does help with balance.

Horses - one is an Irish bred 12 year old and the other is a 7 year old Portugese bred TB. Both compete BSJA and BE, including FEI 3 day events. They live at home and my husband works full time so not being able to lift bales, muck out etc is not really an option. After my CXL I sent the young horse away for a 3 weeks and turned the older one out but it was not ideal and only for a short time.

Glad to hear you are back riding
xx

[longhoc]

It's not for me to tell anyone what to do (okay, when did that ever stop me ??!!) but having gone through the procedure I'd say that not for a single second do I regret it... but I can only say that because I was really getting desperate with an extremely thin cornea which was a problem for that reason alone. And that's before you throw in the difficulty of getting a lens that works.

But I exhausted every other option before deciding on surgery.

If I hadn't tried everything, and I mean everything, I'm not sure that I wouldn't be sitting here nursing a major resentment because of the impact on one's quality of life. At least in the immediate post-operative phase of recovery.

It might be worth taking a little time to think things through a bit more, especially if you're getting those niggly doubts about whether or not it is the right thing to do. You can always have the surgery later on if you decide that it really is the best option. It doesn't hurt to wait until you're completely sure. Once you're in that place, you know that no matter what the outcome, you did the right thing. That's what I did -- got told pretty much I needed a graft, but spent a good year to 18 months making absolutely sure before saying "yes".

Then again, you could have acute hydrops the very next day and wish you'd not dithered around so much... (don't want to alarm, it is very much an outside risk, could be a question to ask your specialist to help you decide -- whether they think you're particually susceptible given the degree of corneal thinning you have).

Of course at this point Andrew will probably (and with good justification) say that it's not something he's ever regretted. And having been through it and into the recovery phase, I'm so glad I bit the bullet and had the graft.

Sorry, wish I had a crystal ball I could look into for you.

Keratoconus, it really is the gift that keeps on giving...

Best wishes whatever you decide

Chris

[ralphg]

Hi

Just to throw in my two penneth.

I had a full thickness graft last November. I'd had no useful vision in the eye for about 5 years but was managing fine with other eye until I got some abrasions and scoring on the bad eye and this caused me to have real issues with sensitivity to light.

One of the big questions for me was whether the surgery would stop me doing the things I love, in paricular SCUBA Diving. I was told that I would need to have at least six months off of diving, maybe a bit longer, but that I should be OK to dive once the graft had healed enough, certainly within a year.

I decided I could live with a six to twelve month break if there was a good chance of getting better usable vision, particularly at night. If I'd been told that I wouldn't be able to dive again then I would probably have said no and resorted to wearing an eye patch on the bad eye if I needed to.

Personally I think I made the right decision. I've been given the OK to dive again and will be heading off to the Red Sea in about three weeks (can't wait!) and I seem to be getting good results from the transplant in terms of vision improvement.

I will say that I wouldn't have felt like doing much in the way of strenuous activity for at least five or six weeks after the operation and even normal day to day stuff left me feeling really tired for the first month or so - I've never slept so much in my (adult) life as I did in those weeks.

I think it's all about balancing what you hope to get out of it with the impact it will have on your life and then making a decision you can live with.

Good luck with whatever choice you make

Warm regards
Ralph