When to have a graft?

[Anne B]

A letter i have from Mr Dart describes my eye as having superior thinning although this is within the central 8mm zone.

Anne

[Anne B]

Right this is going to drive me mad. One minute i think ok i need a graft , i will get it done. Then the next i've managed to convince myself i can see just fine.Was everyone else like this or am i making a mountian out of a molehill!!
One thing that bothers me is that i havn't got any scarring. This always seems to be mentioned when talking about having a graft.

How did you reach your decision? Who did you talk to?
Any ideas would be great.

Sorry to sound so pathetic.

Anne

[Lynn White]

Hehe Anne....

This sort of thing happens with any kind of non urgent surgery, so you are not alone!

I agonised about having metal work taken out of may ankle for a couple of years and my Step mum about replacement knee sugery. Its part of the process and when you do decide to go ahead with it, you feel better for having thoroughly explored it all.

If you don't have scarring, then certainly thats a good thing but it might be that grafting is being suggested to you because no contact lens looks like it is going to work. This can be sheerly because the cornea is so distorted.

If you definitely have no scarring then maybe you should explore other options first before leaping into surgery but again, the only people that can advise you are the professionals that know your eyes!

Lynn

[GarethB]

Anne,

I think age a maturity has a large role to play.

When we are younger I think we go through a phase where we feel invicible and it is our right to have the surgery.

As we mature we are more aware of the potential problems that may lie ahead. I know when I had a graft, I had already survived a major car accident plus being the arrogant person I was, it was a case it will not happen to me when it cme to the potential pit falls and lighhtning does not strike twice.

I think John Dart is very honest whenhe talks about grafts, when I had mine done, grafts were 'sold' to the patient as a cure for KC rather than a way of making sight correction easier.

To be honest, I think it will be normal to have sudden changes of mind form day to day righht up to the day of the graft. All through the healing process it is expcted that some days you will question if you did the right thing, others you will be convinced of the fact.

It is a big decision to make, so keep asking the questions, we will keep sharing experiences. Still today I am very conceous o the fact two people gave their lives so that I could have the quality of vision that I enjoy today.

Personally if I had to have a graft for the first time now, I would be a lot more cauteous andtry all the lens options. I know you have been looking at the lens options. This combined with the fact that I used to work away from home a lot, it took me being very ill to realise what I had missed with my daughter growing up. I have already made the decisionthat if my right eye can not be managed with a lens I would try and force the issue of C3R and if that were not an option I would have the high risk surgery that for me would carry as much chance of loosing the sight completely as it staying the same or improving. I just do not want to miss my dauhter growing up like I did the first 18 months.

Just my opinion I were faced with a similar decision today.

[Alison Fisher]

If I were faced with the decision today I'd barely hesitate in going for it, but that's speaking from the perspective of someone who's had two extremely sucessful grafts. It was an easy decision when faced with my first graft as well, but only because I'd run out of options.

When I went on the waiting list I'd got a newborn, a two year old and I'd spent several months without lenses of any kind (no longer able to be fitted). It was a case of locating the baby by remembering where I'd left her or by her cries. Looking back I have no idea how I managed, but well, you do don't you? My two year old was wonderful as well - a huge help. By the time I had the graft I'd got a three year old and a six month old - oh, and a husband who worked long hours and couldn't take any time off to help me. My Dad stayed for about a week and took my eldest to and from playschool etc, but after that we were on our own. We took our time and we managed pretty much okay. My girls and I are very close and I put a lot of it down to those early years when the three of us worked as a team (I had the second graft when my youngest was four so she did her own stint of 'helping Mum').

I don't recall anyone ever mentioning me having any scarring. If I remember rightly I was offered the graft purely on the basis that lenses could no longer be fitted - but remember this was in 1992 and things have changed an awful lot since then. No one ever mentioned that I could wear lenses again afterwards - that I would have remembered as I detested the things and was so glad to be rid of them. To be able to do something as simple as slip a pair of glasses on and be able to see well is something I will never reach the stage of taking for granted. I had a terrible time with my lenses and still shudder at the thought of them.

A graft might not be a cure but IMHO it's the closest thing there is to it. I'm photophobic and from what I can make out my eyes are more sensitive than most people's, but I can go for long periods of time where I totally forget I have KC. I never leave the house without a hat, but hey, I like hats so that's no big deal (and they're great on bad hair days). No more uncomfortable lenses and all the rigmarole of caring for them. Only one hospital visit a year for a check up. Only one visit to the optician's each year. If you have KC surely this has to be the way of the least impact on your life - if the grafts go well that is. It all depends on that 'if'.

If I had read a forum such as this one prior to having my grafts I would have been more worried than I was in going in for them. This is not intended as a criticism of anyone in any way at all as we are all talking from our personal experiences of KC but the negative experiences here do seem to outweigh the positive. Yes you need to know what can go wrong (I didn't) but don't lose sight of the enormous benefits if it goes well.

Good luck in making your decision Anne.

[John Smith]

Alison,

Thanks for your post... but it is certainly worth remembering that we only tend to hear of the bad cases on the forum. Most people whose progression and treatment are "pain-free" don't make it to the board...

[Anne B]

Alison,

Thankyou for that it was really nice.
I'm am so glad everything has worked out so well for you.

The year before last i went to watch my daughter in her christmas play. When they came on stage i had to ask my husband which one was Megan. Last year i had a lens and it was really uncomfatable and my eye was streaming but i wore it just so i could make her out on the stage. This has been the most upsetting thing for me. I have two more kids to go through school (Fay does her first full day today!) So i am thinking i should have a graft and enjoy my children to the max.
If i wait i may miss all the best bits.

Thanks for your help.

Anne

[Michael P]

Anne, whatever you decide will be the right decision.

I think you are going to the social on Sunday and I am sure you will get some good advice there as well.

[Alison Fisher]

You are welcome Anne.

Your last post brought a lump to my throat. Not being able to see my girls properly was the thing that got me down most about my pre-graft sight. I didn't really know what my youngest looked like and when I saw my eldest properly for the first time in ages she'd changed so much. Seeing myself was a bit of a shock as well. I thought I had perfect skin, but, er, no.

Take care, Alison

[Anne B]

When i had a lens to try, My children looked so different . They had different colour hair!!!

That the problem i am so used to having uncorrected vision i don't realise how much i am missing.