Shelley Healy

Shelley tells us what life is like on the waiting list for a cornea transplant.

I was 9 when a problem with my vision was picked up.  After a couple of years of opticians um-ing and ah-ing, I was finally given glasses and told I was short sighted.  

I was 14 when the optician first decided I needed to see someone more specialised.   I began seeing the consultant who would look after my eyesight for the next 14 years.  From the first appointment, when he diagnosed me with the degenerative corneal condition Keratoconus, where the cornea thins in the middle and becomes cone shaped, I knew a transplant was in my future.  He made that quite clear.  However, he did tell me that wouldn’t be for about 10 years, and he could manage my sight with glasses for as long as possible.  It seemed like such a long time away back then!

It’s now 15 years later.  I’m glad that I have been on borrowed time for so long.  I’ve gone through university 3 times, getting myself a Masters in Health Psychology, and am desperate to do my doctorate, but in the last 2 years things have deteriorated.  8 years ago I was diagnosed with the genetic connective tissue disorder Ehlers-Danlos Syndrome, which means my connective tissues are more fragile than most people’s. There is no definite link between Keratoconus and EDS, but it’s entirely possible my corneal dystrophy is made worse by this.  Just over 4 years ago I had my son, I didn’t know at the time that pregnancy hormones could make the condition progress more rapidly, but even if I had, I still would have had him.   

Thankfully all was well and I had a normal pregnancy, but when I saw my consultant 13 months later, it became apparent my eyesight had deteriorated.  He told me this was probably the last pair of glasses he could make for me, and advised me he would refer me on elsewhere when the time came.  He also suggested I had no more children until after I had had my transplant.

Last year I split from my son’s father, and in the process of ‘getting my life sorted’ I got myself referred to a specialist in Keratoconus.  After a detailed examination, he changed my diagnosis to the far rarer Keratoglobus, where the outer edges of my cornea were thinning and bulging, making transplant more difficult. I set off to a specialist eye hospital where I was immediately put on the transplant waiting list and told I would have a transplant in ‘about six months’.

That was last November.  Every time I go back I am told ‘about six months’.  I was fitted for a contact lens for my slightly better eye, which although it does improve my vision considerably, it turns out I am one of those people who just can’t tolerate contact lenses.  In August this year I was at work one Friday morning when I developed severe eye pain which made me unable to work, see, drive or do anything other than think about how I would rather remove my own eye than endure this.  As my eye hospital is a good 2 hours drive away and there is no emergency clinic, I had to wait until the following week to see someone.  It was established that the back membrane of my cornea had ruptured, due to the progression of my cornea bulging so abnormally.  

The last 2 months has been a series of appointments, pain, steroids, drops every 2 hours, days off work because I can’t look at my computer and lots of talk radio.  As the days get shorter I have had to start making arrangements to get transport to and from work, to pick up and drop off my son at school, and once again go through a Winter of limited independence as I cannot drive in the bright Winter morning light, or in the dark.  

In other ways I have suffered too.  I love musicals, acting and singing in them.  At the time I was very first diagnosed I was playing a small role in West Side Story, my favourite musical of all time.  I am now a member of my local operatic society, but because I cannot currently commit to a role in case my time for a transplant comes up I can’t be a part of their current shows.  For a long time I didn’t go out, didn’t make any effort to date again, but I got sick of putting my life on hold and joined some dating sites.  My transplant is something I am upfront about, but it is always scary telling a new guy that I am facing this – what if my transplant comes up when we’ve not been together long?  Is it right to put someone else through all that?  My hobby was originally embroidery, but as my sight got worse I had to stop.  I took up knitting instead, as it was less fiddly, but now I struggle even with that.  

As time goes on and with every appointment I am told ‘six more months’, it becomes more and more demoralising.  And, of course, my sight deteriorates more and more.  I know it is because of the lack of available corneas that would be suitable for me, and that’s the luck of the draw, but it still makes me very sad at times.  It’s not life or death for me, but it is definitely about quality of life.  If I can’t work, can’t drive, can’t read, watch TV, engage in hobbies, date, cook for myself, clean my house properly, what do I have?

They say in 10-15 years my other eye will need to be transplanted too.  By that point maybe they will be able to use the artificial corneas which were first developed last year.  Until then, for my left eye, I am reliant on someone who is brave enough to contemplate their own death, and who wishes to help someone after the event.  I have spent a lot of time thinking about it, and for the last few years have made it clear to anyone close to me that when it is my time, to take anything and everything they can.  I’m on the register too, of course.  I was always in support of organ donation, but having this experience, of waiting so desperately, makes me determined to help as many people as I can when my life ends.