Back on track

Five weeks after my surgery and things are slowly getting back on track. I am working shorter hours - computer screen glare and drying air conditioners notwithstanding. Drops and ointment are never far away.
I need to get up and walk away from the screen regularly as constantly peering at my computer is tiring.
The waiting game continues as to whether I will need some more surgery on my eye to level out the bump.
At this point it is a 50/50 proposition.
I have spent a bit too much time wallowing and being super careful. but yesterday I went back to a spinning class in the gym. It felt good to turn my legs over for the first time in more than five weeks. It's all about trying to get a balance between getting on with it and not doing too much.

The letter

I opened the letter and scanned the first few lines.
I was overcome by a confusing mix of guilt, sadness, fear, dread and relief.
"I can't read this," I said.
"I will read it if you are having trouble," my husband offered.
"I don't mean I can't read it because I can't read it ... I mean I can't read it because ......" my voice trailed off, tears welling in my eyes.
John gave me that look that husbands give when they have no idea what is going on but can see that they are on a hiding to nothing. We were sitting in the middle of a coffee shop near our house.
He calmly picked up the letter and started to read it to himself. He nodded knowingly.
It was a few days later that I actually sat down and properly took in its contents.
"The donation service feels it is appropriate to write to you to let you know that there is a way for you to express thanks to the donor family. I would ask that you spend a few minutes thinking about the donor and their family who made your transplant possible.
"The decision to donate was made in a time of great sadness for the family in the hope that two people may be able to see clearly again."
And I was one of those people given a better chance at life thanks to the donation of a cornea.
I wondered about the other person. I guessed they had received the same letter. How were they coping with it?
For me the journey has been deeply emotional.
The day one of my specialists checked my eyes and said the time had come when I needed to seriously think about a cornea transplant I shed a tear.
Those who know me well know that I am prone to tears. I cry at school assembly, even if it isn't one of my kids receiving an award. I cry at movies even when they aren't strictly tear jerkers. I cry watching the Royal Children's Hospital Appeal.
So it is fair to say that since I found out I had pretty well come to the end of the road in the correction of my Keratoconus I have shed a few tears.
I think my specialist thought that I was crying because I was scared. Yes, sure, there was and is a bit of that. But I was crying at the realisation that the procedure would not take place unless another person died.
That's heady stuff for a lapsed Catholic guilt-ridden Virgo.
I kept the imminent surgery pretty quiet. I am normally a "problem shared is a problem halved" type of person but not so on this case. I have been doing my own grieving.
A few people I had needed to tell for pure logistical reasons were sympathetic, supportive and freaked out. A few brushed it off, thinking it was laser surgery or cataract surgery and I would be good as gold overnight. A few I confided in reassured me that it would be the wish of the donor and their family to help someone like me.
Others were a bit too glib for my liking. "Well, they're dead, it won't be much good to them."
For me it is a big deal for people to donate their organs. I have heard contradictory things about cornea donations. One of my specialists suggested that husbands had been known to veto the donation of their wife's corneas. "Take anything, but please don't touch her eyes," was how one explained it.
Another medico said in their experience cornea donation is relatively common because it is not invasive to remove the organ, people are more likely to give permission.
I am not sure but specialists, in consulation with the collection service, work on a formula of x amount of donations per month and then give you a rough idea of when your number will come up. It is a bit like taking your number at the deli. But, unlike some other organ procedures, there is no emergency phone call in the middle of the night to tell you to drop everything and get into the hospital pronto. In my case I had been aware of my D-day for some time but was in denial or more likely dread.
In the weeks leading up to it, every time I picked up a newspaper and saw a story about someone dying I quickly averted my eyes. I did not want to even think about where my new cornea was coming from.
So, now down the track, what do I say to the donor family? I tucked the letter in my pile of "must do" paperwork. But the task was never far from my mind. I started thinking about it while I was in the shower and started sobbing. I have sat down at the computer and been unable to find the words..
Due to strict legislation about organ and tissue donations in Australia I can't identify myself. I have to be vague in any letter.
I finally wrote that letter. I won't say what I wrote because that is between the family and me. But I hope it conveyed my great sense of gratitude. I hope they are coping with the death of their loved one. And I hope I am worthy of this greatest gift of love to a fellow human being.

Birthday celebrations

Today is my birthday. It is nearly a month since my transplant. When one gets to a certain age - closer to 50 than 40 - there is a range of feelings with each birthday. Yes, I know it is just a number but it's a number that spells a lot of things. Age and all that accompany it. More particularly, aching knees, poor eyesight and with each day news of someone in a similar age bracket fighting some life threatening illness.
So, in between feeling a bit sorry for myself, I have been very mindful of just how lucky I am in many ways.
Thanks to a donor I have a chance at a much better quality of life. I have three children who drive me bonkers but ultimately just about every bad thing about them I can trace back to myself and a doting, if not infuriatingly forgetful, husband. I am pretty lucky in the whole scheme of things.
So on that note I can say that things are going along reasonably well. I am getting more used to my circumstances. The vision in my "new" eye remains fuzzy but I am hopeful that it will improve.
Yes, there is some discomfort in that eye but it is not unbearable. I am guessing and hoping I am where I should be.
I am still very tired. I think part of this could be that I have not been doing any exercise and have turned into a bit of a couch potato and lack energy.
I was thinking I would like to do some gardening but became a bit wary in case I knocked my eye.
At the weekend the kids went to a pool party and one of the kids hit me full on in the forehead with a high powered water gun. I was wearing sunglasses but the water gushed into my eye. I panicked. John gave me his handkerchief to dry the eye which I so far have been very careful with.
I was in a spin but I think it is probably OK. I feel a bit like an over anxious mother to a newborn.
I have only one chance to get this right. I want to do all I can to make it work.
I am due back to see Dr H in a few days so I will know more then.

One day at a time

Well, tomorrow marks three weeks since my surgery.
I think things are where they should be. My eye appears to be settling down. I am not in as much pain. I still feel like I have a dodgy contact lens in my operated eye which is a bit annoying.
This morning, while two of my three children were still in bed, I showered and walked to newsagent1 (closed) then newsagent2 (closed) and then the Coles Supermarket in search of a magazine my eldest daughter told me featured a photograph of singer, Pink, on fhe cover and an article about my husband's brother who is an author.
Lucy, 7, had told me last night that as part of her ongoing media studies she needed to bring a magazine to school. Well, at that point, I had no magazine and when I read the details of the note on the fridge it was supposed to be a magazine with something relevant to the child.
I guess I could have sent along a mag with a singer or member of the Royal family in it. But when Hannah mentioned she has seen the mag at the friend's house I decided that was it. But my expedition was fruitless and without my sunglasses my eye was killing me..
Sunglasses are permanently attached to my head at the moment. Even when I am watching television I feel I need to rest my eyes and put them on.
I am finding my inability to drive a problem when my children are involved in a myriad of activities. Like Friday when we go to tennis straight after school. It is so much easier to drive. Fortunately, I was offered some lifts from some kind people.
I am still adjusting to the restricted sight in my "bad eye". I walked the kids half way to school today and managed to mis-judge a pole.
I have ventured out for a fundraiing evening and a few wines knocked me around so I will keep well clear of alcohol. I don't think the late night helped, either.
I am gradually trying to build up my tme in front of the computer. I have bumped up the point size on my computer and mobile phone to make reading and writing easier.
I am used to being busy, so I think that has been a problem for me. But I owe it to myself and my donor and their family to give it my best shot.
Which means I best sign off as another round of drops is needed.

The Healing Begins

It is now 12 days since my surgery. Do I feel better? Well, yes and no. I certainly am not feeling as flat as had been. The demands of eye drops, to stop rejection of the graft and to lubricate my eye - made me recall the constant call of a newborn baby. No sooner do you feed them than they need changing and burping and so on. But after about nine days Dr H wound back my eye drop regime. Now I am about four times a day with an ointment at night.
He says things are healing and my eye certainly looks a lot better.
I complained that the graft felt like an ill fitting hard contact lens I longed to take it out. In fact, one night when I was feeling really tired I popped an eye patch on because I feared I might accidently try to pop it out.
Dr H, examined my eyes and said there appeared to be a slight buckle or crease in the graft. My words but I think that it what he was saying. Generally, he would put in 16 stitches. In my case he put in 17. However, it might require one more stitch.
He must have seen the look of fright on my face. I think he regards me as a very nervous patient. I probably am but maybe I seem nervous because I say what I am thinking.
He said he would give the graft three weeks to settle down. Fingers crossed it will work itself out because I am not keen on going under again.
He directed me to the eye chart but I still cannot make out any of the letters. I could lie because I pretty well know them off by heart. But that would be cheating. And one thing I was clear about what that my eye would be worse before it got better.
I have found that really difficult to manage. Over the past few days I have ventured out but find the loss of sight in my right eye means I find it difficult to judge distances on my right. I am quite nervous. I have no doubt that I will adapt to this. I had plans to provide more posts on this blog on a more regular basis but at this point I am finding my eyes very tired. I was due to go back to work in a few days which would have given me two weeks sick leave. However, I do not feel able to spend more than a hour or so sitting at a bright computer screen. I will see how I feel next week.
I have my fingers crossed that things will fall into place in the next week or so and I can start resuming some of my normal activities. But I can't see a time anytime soon that I will feel comfortable enough to drive. Before my operation I was classified as being legally able to drive wearing my contacts. With one gone I don't feel confident about my own or anyone else's safety.

The operation - part one

It's a Tuesday late in August and Spring is trying to push it's way through. I am sitting at the computer in my home study, peering through one eye at the computer screen. How do I feel? Well, not great but I thought it would be difficult. I was warned my eyesight in the right eye, which has undergone the cornea transplant, would be worse before it got better. But, when you are struggled with your vision all your life, it is hard to contemplate being more blind.
At a later time I might describe my feelings on the day and the emotions I felt about receiving a donor cornea. I need to be more in a contemplative rather than survival mode.
After last Tuesday's op I felt groggy but relieved. I had undergone a general anaethestic. It had been a big day beforehand with upheaval all around me. I had woken with a sore throat and runny nose. Late in the afternoon I called the rooms of my opthamalogist. Let's call him Dr H. His normally cool, calm and collected receptionist pondered out loud why I had not called earlier in the day.
"Well, I have felt worse as the day has gone on," I tried to explain.
She left me with instructions to call Dr H first thing in the morning to see if my cold was worse and if it was not the operation would need to be postponed.
I rode my bike the short 15 minutes home. I complained bitterly to my youngest child, Lucy, blaming her for giving me the cold. She had a head cold for weeks and I had kept telling her to stay away from me. Alas, she loves to jump all over her mum. It was inevitable.
I filled myself up with lemon and honey all evening and couldn't sleep because I was so nervous. I had been gearing up for this day. The next morning I rang Dr H. I explained that I felt Ok. I added that I had a tough day, for various reasons, the day before I had been teary. It would not have helped matters. He said he thought I was fine.
"You will have to wait five months if we wait," he added. He gave me the mobile for the anaethetist and said to call him. I rang Dr A and explained the situation. He said we should assess it when I got there.
So, there I was ready but still unclear if it was happening. He assessed me. The nurse checked me. I was fine apart from nerves. As I was waiting to go under, Dr A asked me about my bad day yesterday. My eyes welled up.

Keratoconus & Me

I was diagnosed with Keratoconus - I still struggle with its spelling - when I was not even 10. I had been prescribed reading glasses when I was around eight-years-old. But soon afterwards it was decided that my Keratoconus was at a stage that the only way to treat it was to fit rigid contacts lenses. I would have been about 11-years-old when they were first fitted. They were tiny little things with a greyish tinge. The cruel irony of correcting poor sight with these weeny little things struck me straight away. Over the years, I have been on hands and knees in bathrooms, restaurants, ovals, museums and in cars trying to locate the little buggers when they have gone missing. Friends and family have lived to tell the tales. It hasn't been pretty when I have been separated from my lenses.
Those early days were fraught when you are not used to putting things in your eyes. Lots of near misses and lots of discomfort. It is amazing that these days they fit rigid contacts in the eyes of toddlers.
So what is Keratoconus? I often joke that not only is my middle-aged body bulging but so are my eyeballs!
There is a lot of information out there but I quite liked the website I came across the other day www.whatiskeratoconus.com. It explains the disease simply. It is clear, like a window that light has to pass through to enter your eye.
"Behind the cornea is the lens that focuses the light onto the retina at back of the eye. The retina converts the light into nerve signals that your brain can understand. In a normal eye, the cornea is smoothly rounded. The light passes through evenly onto the lens," the website explains.
But in dodgy corneas like mine this doesn't happen.

Instead, my cornea has thinned and bulges. Yep, another spot to battle that bulge.
Back to the website: "The light coming through is distorted the lens cannot focus it properly and vision is affected. The name actually means coning of the cornea, although the actual distortion of the cornea is not as regular as a cone."
The irregularity of the cornea means the vision is very hard to correct.
Hence the fitting of rigid or hard contact lenses.
Over the years, as people have learned that I wore hard contact lenses, I have been advised I should try laser surgery "because that really worked for my grandmother" or the assumption is that I am too vain to wear spectacles.
On the contrary, would love to be able to slip on a pair of specs. I know peope complain that they fog up but it would be a great convenience when you are at the beach or hoping out of bed to put on some glasses. Sadly, I have been unable to get any correction with glasses. Not even Coke bottle glasses.
copyright: Claire Heaney 2012.

The Countdown

Claire Heaney Cornea Transplant Diary

The day I have been waiting to arrive for seemingly most of my life is fast approaching. I have been in denial. Scared stiff. Part of me feels like I felt as the impending births of my three children approached. I feel like nesting. I feel I should be trimming, tidying, sorting, throwing out .....
I feel like I will never have an opportunity to do those things again. No matter that most of the outstanding tasks have been sitting around waiting to be done while I have chosen to use my time otherwise.
There's a lot about myself and my life that I have control over. But, sadly, not my shockingly bad eyesight. I know people have plenty of worse disabilities and hardships but I feel like I have gone through my life barely being able to see the glass, much less whether it is half empty or not. But we all cut our cloth according to our situation. I don't drive at night unless it is somewhere very close to to my house (this has been great as it has meant that my husband is always the designated driver). I have chosen to continue living in an inner suburb from which I can ride my bike to work, walk the kids to school and so on. I don't think that has been any great hardship. The kids would love a trampoline and backyard and it would be nice to host a big barbie for friends in a lovely backyard. But that's OK. There are parks nearby. I'm used to going to the footy and only really being able to see half the game. That's not so bad when you barrack for perpetually struggling Aussie Rules team, Richmond. Not being able to see most of the action, or inaction, is a blessing. But there are lots of other things that are annoying. Like not being able to see past your nose in the morning before putting your contact lenses in. Not recognising people or speaking to someone you think you know because you can't see properly. Then, as middle age settles in, not seeing those huge black hairs sprouting  from my chin and eyebrows. And then, unhelpfully when a pair of tweezers is nowhere to be seen, my husband says: "Gee, you need a good plucking, you have some huge black hairs sprouting from your face." Great!

copyright: Claire Heaney 2012
Posted 11 minutes ago by Claire Heaney