UK Keratoconus Self-Help and Support Association

Hi I was diagnosed with KC in 2003 and have like many others since had numourous visits to the eye clinic and replacemnet glasses and contact lenses.I have tried and tried with various contacts and just cant get along with them as my KC worsened.Finally my fab and very patient opti lady has sent me for a referal with the consultant with a recomendation for a graft.
However I will apparently need to convince him that( despite my age at 27 )I should have the graft.I have not been able to have a consultation with this man since I was diagnosed and now cant believe that before even seeing me let alone my eyes he is of the firm beleife that if you are young you should not have a graft.Please can anyone out there let me know if they have met with this oppinion and what can be done about it.

Charlene,

I have not encounterd this, my first graft was when I was 17 and the other eye done the following year.

You can now choose which hospital you can got to so you can show your GP the letter from the optom and ask to refferd to another eye unit.

Hi Charlene! I think any consultant would consider a graft to be a last resort, but it's not a question of age, but of how quickly KC progresses. For a few, it seems to progress very quickly and they may have a graft in their teens or early 20s, others will go years with contact lenses before they need a graft, and of course the majority of people with KC never get to the stage of needing a graft at all. And there are a few people who can't tolerate lenses at all, and may be offered a graft for that reason. But there are all sorts of lens options these days - some people find piggy backing is the answer (a soft lens under an rgp) others swear by scleral lenses (these cover the whole of the eye). Have those options been tried for you?
Anne

charlene godfrey wrote:Hi I was diagnosed with KC in 2003 and have like many others since had numourous visits to the eye clinic and replacemnet glasses and contact lenses.I have tried and tried with various contacts and just cant get along with them as my KC worsened.Finally my fab and very patient opti lady has sent me for a referal with the consultant with a recomendation for a graft.
However I will apparently need to convince him that( despite my age at 27 )I should have the graft.I have not been able to have a consultation with this man since I was diagnosed and now cant believe that before even seeing me let alone my eyes he is of the firm beleife that if you are young you should not have a graft.Please can anyone out there let me know if they have met with this oppinion and what can be done about it.

Not sure why or on what he basis this on? He may be of the mindset that those who are young may need to have another graft as many still beleive the life expectancy of a graft to be 10 years. Unless theres an underlying reason why you cant have one, this is the only reason which I can assume.

Age has very little to do with when you need a graft. When you get to the stage where you cant see after having exhausted ALL avenues with lenses etc, its then a suitable time to explore this route.......

Ask him why he feels you should not have the graft. And it id stems from his belief of the above, then you have no choice but to air your views and ask him to reconsider. If that fails, bin him! Get a second opinion. That may sound harsh, but its in a consultants interest and duty to care for the patient, and this should not be based on personal belief; but rather on what is best for you now!. If you cant function and you firmly beleive you need a graft, and that will offer you the best way forward, then thats more than enough....

If he thinks you are too young and you may need another in latter years, then to be really honest theres just far to much data out there to put that thought and process to bed! But Im sure you porb dont want to go that route.

Speak with him, air your views, find his out, and then see what he says....

HTH

j

Charlene

I'd wait until I had met the consultant before rushing to judgement. So far as I am aware the decision of whether or not to graft is made on clinical indicators.

I postponed my first graft until I had gone blind. At a much earlier stage I was offered surgery, but fear got the better of me and I opted for the long term use of lenses.

Some consultants may have different sets of clinical indicators, but age should not be one of them; except to say that some ophthalmologists may take the view that the fewer operations to which an individual eye is subjected the better. "Graft early and graft often" is probably not a solgan by which many would want to live.

Andrew

thanks to all for the posts it is nice to know there are people out there who are going through it.Yes I have tried many different types of lenses and have now got to the poitn where im on the verge of loosing my drivong license.My hubby is in the navy so dissaperas a lot and we have a toddler who is greta at running and getting into things before i see him!
I have put off the graft route for as long as i feel able but it is now really affecting my socail life and work.I often work night shifts in hospital so working in the semi dark with equipment is quiet hard.I also dont think its fair on my little one any more as when daddy is away its just the two of us and i am not safe out after dark so winter was hard work.The consultant has this view that the graft doesnt last long so you should wait but as i have mentioned if it is now controlling your life and that off the people aroind you surley now is the time to act.
Really good advice to ask his views and to bin him if neccassary as im sure i could get a positve consultaion in other areas.Let you all know how thursday goes getting very nervous now.

forgot to mention my brother in law has KC but only in one eye unlike my two and i also have astigmatsim in both he is off the same age as me and has just been put on the list for a graft in the oxford area so this age thing is really getting my goat !!!!!!!!

Good luck on Thursday Charlene! My grafts are over 20 yrs old now, and I know of people with grafts still going strong after 30 years, so it isn't a short term measure!
Anne

My graafts are about 20 years old too and are in better condition than my own cornea.

Long term graft data over 10 years is sketchy. I think this is because the stats are not looking at just KC. The succes rate for grafts is apparently far higher in KC patients. As a result many do as I did and end up under the care of high street optoms because we just need glasses so no one knows how well we are doing. It is only extreme cases like mine that end up in the healthcare system where the stats start to be reported.

charlene

if it makes any difference, im 25 and had a graft in november.

Sarah