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.