First of all, I want to thank everyone who took the time to read Part One of My Transplant Journey because I never expected to get such an amazing response! So many people have commented, emailed and shared my story which means the world to me. A lot of you are keen to know what happened when I stepped into the Opticians so I’m going to continue on. If you just stumbled onto my blog then make sure you read Part One first!
As I mentioned, walking into the Opticians I had come to terms with the fact I needed glasses. Did I think I would suit them? NO!! But did I want wear contacts? NO WAY!! The thought of putting anything in my eye made me feel physically sick (ironically, nowadays nothing eye related phases me at all, haha!). I was led through to an eye test room pretty quickly and I felt surprisingly calm. “Look left, look right, look up, look down” (You have no idea how sick I am of hearing those words now). I was all geared up for the eye chart which I imagined was coming next (I knew I wasn’t going to do well, but I’ve always weirdly loved exams and this is an exam…right?! Haha).
“I need to go and get my senior colleague. I will be back in one moment.” Erm…okay? I assumed she was just new and still, I didn’t feel anything. After he examined my eyes, he told me that I had to go to the hospital and he was going to call to make me an urgent appointment (which he did, for the next day which was a Saturday morning!). That is the moment my heart sank and I knew something was seriously wrong. I didn’t cry because I still had to go and face my mum. The optician wouldn’t tell me much when I questioned him about why on earth I needed to go to the hospital but from the tone of his voice, I knew that neither glasses nor contacts were a solution to this problem.
I’m going to cut a long story short now but after weeks of tests and various eye infections that very kindly decided to come along for the ride (thanks for that! Was a bloody nightmare!!) there was one hospital visit that changed everything. I was referred to a new doctor who prides himself on being blunt and straight to the point (and is also one of the best in UK for dealing with my condition. I love the guy!). Up until then, everyone else had tip toed around me; telling me that once the infections clear up I might be okay. In other words, feeding me utter bullshit because BEFORE the infections reared their ugly heads, there was already a problem. I prefer the brutal, honest truth and I guess I got my wish (on that front at least).
It took him less than five minutes to examine my eyes before he told me I had a condition called Keratoconus. Basically, this is when the corneas start to move and thin out, forming like a point in the middle (this is why contacts don’t always work for such patients, because the cornea is not flat so the contacts just pop out!) and as a result, vision becomes extremely blurry. As it is a progressive disease, vision deteriorates over time (sometimes it abruptly stops deteriorating, for no reason!). In my left eye, it was at the worst stage it possibly could be: I had gone from perfect vision to less than 5%. I still can’t get my head around that to be honest. How???!! Why???!! To these questions, there have been no answers. When he then told me that there was no actual cure for this condition and that a transplant was potentially my only hope (although he was quick to point out this was not guaranteed to work either), I bit my tongue to hard that I could taste blood. I honestly think if I hadn’t done that I would have completely lost it.
My right eye has the condition too but it is progressing very slowly. To be honest, it is a hard condition to explain. The problem was that because my left eye had deteriorated to such a degree so quickly, it was putting too much pressure and strain on my right eye. As a result of this, my right eye was heavily infected constantly and it was still a little blurry because it was suffering from Keratoconus too. I will never forget that moment my doctor told me my eyesight was so poor that he was worried I would fall down a ditch.
That statement terrified me. What scared me even more was when I turned to look at my mum sitting beside me; I couldn’t make out her facial expression. It was hidden amongst the blur of colour that was becoming the norm for me. It then occurred to me that I might never be able to see anyone properly again.
I’m going to stop here because I’m finding this really emotional to write and I need a bit of a break. I’m really sorry if this is miserable, boring or too honest but I’m determined to share my story – warts and all!. This has been the biggest challenge I have ever faced and I promise, it does get better! But I never let myself forget that things could easily have gone the other way..
If you have any questions about my transplant journey then please contact me. I really appreciate any comments. You can leave one here, tweet me @thingsarahloves or drop me an email (firstname.lastname@example.org). Thanks so much for reading!