new and desperate

[Alexandra]

im new to the site and i need help quick. i have keretakonis in both my eyes. my vision is almost completely gone in my left eye and is quickly getting worse in my right. hard contact lenses dont work and i dont know what to do. they are refusing to give me the ooperation because they say my mental health is not good enough to cope with the after care. even though im married with a supportive family. what do i do now? im totally at a loss and cant cope any more with not being able to see hardly. im only 22 and want to see my 3 year old grow up clearly!

[Andrew MacLean]

Alexandra

The first thing to do is take a deep breath.

You say that you are no longer able to use RGP lenses, but I wonder whether you have ever tried any of the other lens types that are available. In addition to the standard range of RGP corneals there are now several different sorts of lens designed for the patient with keratoconus. Mini Sclerals, Sclerals (haptic lenses), hybrid lenses, and soft lenses for KC all provide at least some people with the answer for which they have searched.

You would be far from the only person here with other health issues; some physiological, some psychiatric. Do not lose heart, nor give up on the prospect of watching your son grow to old age.

Every good wish.

Andrew

[Loopy-Lou]

That's outrageous to withold surgery on mental health grounds. If all types of lens were exhausted and you really needed surgery then you should have it.
I really hoped there wasn't this kind of discrimination anymore. I experienced this when I was young, I waited nearly 2 yrs because the surgeon didn't want to operate on "that girl", he was prejudiced against people with mental health problems and it took commited team members who bothered to talk to me time to persuade him to do what I needed. At that point for me there really was no other option and the staff who took the time to talk to me understood that my impaired vision was making me more depressed!
This surgeon didn't ever bother to talk to me, my GP, any mental health professional, he made a clinical decision based on prejudice and it caused me uneccessary suffering. Thankfully, with a different surgeon a few years later when I had my other eye operated on and it became clear I was having quite severe difficulties mental health wise he was great, really suportive and treated me with respect. At one point I was admitted with an episode of rejection and I was in a ropey state and also had an injury which required surgical repair. They offered me the nurse counsellor who said if I was finding it difficult to get to appts I could call her and she would meet me and sit with me. The nursing staff on the ward were really supportive, I couldn't eat so they made a point of beinging me hot drinks regularly. No one treated me like a loony which some way to repair the earlier damage.

If you can't find lenses and do need surgery, talk to the consultant [with someone with you for support] about your understanding of aftercare and your committment to it, show the surgeonthat you understand it and will do it. If you have contact with a mental health worker or have a decent GP get them to speak/write to the surgeon to support you, to explain your needs and your committment to undertake aftercare and take any appropriate support you might need.
They must not make a clinical decision based on anything other than clinical need, to do otherwise is discriminatory. How do they know you wouldn't cope? They have to back that assertion with evidence, how can anyone [mental health difficulties or not] know in advance how they will cope after transplant surgery?! Don't let them get away with this!

[Alexandra]

thank you. i have an optitions appointment next week and will write down everything you have both said and take it with me. it needs to be sorted. im willing to try anything so will ask about other types of contact lenses. no one has ever told me there were other types of lenses. it seems nobody has given me all the options before.

[GarethB]

I could name many members on this forum who have been treated for depression ranging from mild to severe as they have described it just because of the effect KC has on their lives.

It is about time the whole patient was considered rather than just the eye, it would probably be worth discussing this with your other medical carers and perhaps get them to attend a KC clinic with you to make the consultant aware of the impact KC has on the rest of your health.

The most time I have hadd off work in the past 8 years wasn't so much down to the KC but the depression it caused and the treatment i required. Plus the help of this support group for me at least the depression is a thing of the past and I have adapted sufficiently to KC that it is no longer a problem for me.

[Sweet]

Alexandra,

I am so sorry to read how those who we ask to help us are still bad at doing so because of mental health issues. I really hope that you can get this sorted at your next appointment, Lou has replied with some really good points!

There are loads of lenses and I always say to others to try them first before you have to opt for surgery. You can always remove a contact lens but surgery can't be reversed. I still cope very well with a RGP lens on my right eye but use a plain soft lens underneath to make it more comfortable to wear. This is called piggy backing, maybe you could ask to try this as well. A lot of people here do find it much easier as you do not feel the RGP lens, the only problem you have is cleaning two lenses!

Please let us know how you get on, there are options available to you. It is an excellent idea to take someone with you to be supportive and on your side. You do need to sort out your vision and yes seeing your child grow up is a real motive!!

Love Claire X x X

[Anne Klepacz]

Hi Alexandra
Just wanted to add that if you'd like our information booklet about KC and the DVD of our 2007 conference which covered all the current options for KC, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put them in the post to you.
As for the new soft lenses for KC, yes more people are wearing them pre-graft than post-graft. And, as others have said, there are other lens options too for those who can't get on with the rigid corneal lenses. I do hope you get some more positive answers at your next appointment.
All the best
Anne

[Alexandra]

Thank you everyone.
my appointment went well. they have refered me to a specialist clinic and im going to take my husband with me to make sure they treat me fairly this time. I have done some research into everything you have suggested and now know of things to ask about at the clinic. im starting to feel hopeful now. i was so upset by the thought of there being nothing i can do except go blind. I cant wait for my appointment now though. fingers crossed

[Steven Williams]

t is about time the whole patient was considered rather than just the eye, it would probably be worth discussing this with your other medical carers and perhaps get them to attend a KC clinic with you to make the consultant aware of the impact KC has on the rest of your health.

IMO your absolutely spot on there Gareth. Good suggestion in theory about taking your medical carer along to the KC clinic, but I cannot see that being possible in practice. Wonder if it would result in having your appointment at the allocated time as opposed to waiting for hours in unconfortable overcroded waiting areas.

[Alexandra]

I am finally getting the help i need! i am being fit for contact lenses in the new year! they cant do it sooner as im pregnant. thank you everyone for the kind words you have given me. it really helped