Today I had my weekly check up with the local specialist, and it also happened to be the quarterly scan on my corneas to see if they are degenerating or if they are stable. The few days in the lead up to this test is always the hardest, I know that i shouldn’t focus on the potential of a negative result, but the more they deteriorate the less chance i have of being able to assist my sight with glasses or contacts, I don’t want to be blind.
My appointment arrived and the doctor asked me how my corneal graft was feeling, I started answering and then said ‘wait, can we just look at the scans for the right eye and then discuss the left eye?’ I could hear the tension in my voice, it was quivering but I was trying to stay strong. The doctor read the results and then looked over them again and again, he started with the positive news, my eye has retained the shape, and then in the softest caring voice said that my good cornea had started thinning, Last year’s surgery didn’t work. I held back tears as the doctor turned his chair to face me and run through the options ‘we can just wait Natalie, we can consider doing the crosslinking surgery again to see if that will stop any further deterioration, but it’s never been done before and we don’t know if it will make things worse’. So we agreed that we’d just wait and see what happens.
He checked my left eye and everything was healing well. The stitches were in place and apparently it all looked good.
The doctor also said that he wanted to extend my restrictions, so no gym, yoga or sex for another three months. I can however, go back to work on Monday. He wanted me to do a graduated return to work but i didn’t have the leave, so he agreed i could try to work from home for two days a week to break up the time, but if that doesn’t work then it will be reduced hours.
Then I had a great idea, let’s check how thin the cornea actually is, it’s surely not as thin as the left one was so that will appease my nerves. Then the doctor read the result, my right eye is measurement 475 and my left eye, before the transplant, was 485. Oh my god, what just happened? How did my good eye pass my bad eye? What if this cornea perforates like the left one did? Holy crap, if it’s thinner than the left cornea was then what if i lose that eye now? I have the most patient and kind specialist, he was so lovely at keeping me calm and explaining everything and trying to keep the positives. He said that the cornea may stay this thickness forever and I can keep wearing my hard contact and wearing my glasses and everything will be fine. Or it may deteriorate to the pont where we need a cornea transplant on that eye. He said that all we can do is watch it and take regular scans and see how it goes. Just wait and hope the my left eye heals before my right eye gives out ...
So here I am, this morning I was a girl full of hope and inspiration and now I’m a crumbling mess. I wasn’t prepared for any loss in my other eye, i was focussed on returning sight to my transplant eye and then I could help others with my journey.
If I need a transplant in my right eye before I gain vision from the transplant (that’s assuming that i gain any vision), then I’ll be blind. That means I’ll have to take unpaid leave from work, rent out my house and move in with my mum or dad. I’ll be blind for as long as it takes for a cornea graft to give me sight, or worse ... what is happening to MY life?
How hope can fade so fast ...
I am trying to find peace within