This is the final catch up post.
I was able to have a month's holiday leave over Christmas. It was fantastic not having to stare into a bright screen for four weeks.
The hiccup with the stitches has meant that I believe I am behind in my recovery. However, each day I am feeling much better.
I don't think my vision in the grafted eye has improved all that much. Let's just say it is probably about the same as my eye without a gas permeable contact lense.
I have quite a lot of headaches from eyestrain.
I am still finding sitting at a computer for long periods a problem.
But I have growing optimism each week. Keep you posted.
Tuesday, February 5, 2013
Back on Track (2) continued
When I got home after my post surgical check up my husband was shocked by my blackened eye.
The local had come at a cost. After the needle in the hand to send my off to dreamland a needle was placed near my eye to deaden the area.
Apart from the odd stares the recovery was so much easier.
Wherever I went I felt I needed to explain to people that I had eye surgery.
With friends I made light of it.
"If you think I look bad, you should see my husband," I joked one day. Immediately, I thought that was in pretty bad taste for anyone who was a battered wife.
I commented to a friend how awful it must be trying to go about your business if you were a battered wife.
"If you were a battered wife you would probably stay home," she offered.
After a few weeks the bruise disappeared.
I continued on the drops.
The vision at that point, in the weeks leading up to Christmas, wasn't that great but the comfort levels so much better. Also I had become used to managing with the compromised vision.
My specialist said I was legally able to drive but I did not feel comfortable doing that.
It meant we walked a bit more which did not hurt anyone. I also meant I was able to get helpful friends to ferry the kids to their various activities.
Just before Christmas I started doing short little trips in my neighborhood. I wondered how people would manage if they actually had to drive distances to work and for their work.
I am lucky that I live very close to my workplace and much of my activity is deliberately centred around my suburb.
Not long after the second surgery my specialist commented that I had a loose stitch. I was causing some irritation and while he wanted to keep it in place for as long as possible he needed to make sure it was not annoying me.
Finally, on a visit just before Christmas he told me he would flick out the stitch.
I had to put my chin on the support and stare towards the ceiling, scared stiff that I might blink. I was super nervous.
He used some surgical tools to cut it out.
At a follow up visit I commented to him that sitting there as he cut it out was one of the most nerve wracking experiences of my life. He said the rest of the stitches, when the time came, would be removed in that same manner. Ouch.
The local had come at a cost. After the needle in the hand to send my off to dreamland a needle was placed near my eye to deaden the area.
Apart from the odd stares the recovery was so much easier.
Wherever I went I felt I needed to explain to people that I had eye surgery.
With friends I made light of it.
"If you think I look bad, you should see my husband," I joked one day. Immediately, I thought that was in pretty bad taste for anyone who was a battered wife.
I commented to a friend how awful it must be trying to go about your business if you were a battered wife.
"If you were a battered wife you would probably stay home," she offered.
After a few weeks the bruise disappeared.
I continued on the drops.
The vision at that point, in the weeks leading up to Christmas, wasn't that great but the comfort levels so much better. Also I had become used to managing with the compromised vision.
My specialist said I was legally able to drive but I did not feel comfortable doing that.
It meant we walked a bit more which did not hurt anyone. I also meant I was able to get helpful friends to ferry the kids to their various activities.
Just before Christmas I started doing short little trips in my neighborhood. I wondered how people would manage if they actually had to drive distances to work and for their work.
I am lucky that I live very close to my workplace and much of my activity is deliberately centred around my suburb.
Not long after the second surgery my specialist commented that I had a loose stitch. I was causing some irritation and while he wanted to keep it in place for as long as possible he needed to make sure it was not annoying me.
Finally, on a visit just before Christmas he told me he would flick out the stitch.
I had to put my chin on the support and stare towards the ceiling, scared stiff that I might blink. I was super nervous.
He used some surgical tools to cut it out.
At a follow up visit I commented to him that sitting there as he cut it out was one of the most nerve wracking experiences of my life. He said the rest of the stitches, when the time came, would be removed in that same manner. Ouch.
Back on Track (2)
Well, it is now more than four months since my last post.
Sounds like a confession.
Why? you might ask>
Lots of reasons.
There was a level of despondency and a sense that if I couldn't say something positive I best not say anything at all.
Things went a bit pear-shaped and as they started to improve the Holiday/Christmas season swung into action.
There also were technical difficulties. My PC died and working on a netbook, with sight compromised, was tricky.
Excuses over.
After my last post I fumbled along in a haze of trying to do the usual home/kids/work life balance in between administering regular doses of Prednefrin Forte drops, Chlorisig drops and ointment and various other lubricants.
Keeping the drops schedule is fine when you are home and can get to the fridge but once back leaving the drops at work or at home became a problem. Given they have a shelf life of 28 days and cost $20 for 10ml I didn't want two bottles on the go at once.
The eye remained uncomfortable and in November my specialist decided to do a bit of repair work.
I was due into surgery at around 1pm, having fasted from the previous night. I could have killed for a cup of tea.
I was less anxious this time.
I said my goodbyes to my husband, knowing this would be a quicker procedure. Once in surgery the familiar anaethetist arrived. "How about if we have a local instead of a general this time?" he suggested.
Caught on the spot, I said OK.
It was surreal to be semi-awake during the surgery. I could hear the familiar voice of my surgeon, instructing the nurse to pass the surgical equipment.
I awoke feeling far fresher than I had from the general.
I happily devoured the offered sandwiches, questioning the nurse as to whether I would have had them after my last procedure. She said they were always offered. I had no recollection.
The next day I was dropped at my surgeons for a post-op check up.
He removed the eye pad. "You have a bit of a bruise," he warned.
I then headed home, It was not too far from home and my eye immediately felt so much more comfortable.
I had 17 stitches. He had undone some of the stitches, tightening the graft. I now had 20 stitches.
That sunny last Spring day I felt I had a bit of a spring in my step.
Sounds like a confession.
Why? you might ask>
Lots of reasons.
There was a level of despondency and a sense that if I couldn't say something positive I best not say anything at all.
Things went a bit pear-shaped and as they started to improve the Holiday/Christmas season swung into action.
There also were technical difficulties. My PC died and working on a netbook, with sight compromised, was tricky.
Excuses over.
After my last post I fumbled along in a haze of trying to do the usual home/kids/work life balance in between administering regular doses of Prednefrin Forte drops, Chlorisig drops and ointment and various other lubricants.
Keeping the drops schedule is fine when you are home and can get to the fridge but once back leaving the drops at work or at home became a problem. Given they have a shelf life of 28 days and cost $20 for 10ml I didn't want two bottles on the go at once.
The eye remained uncomfortable and in November my specialist decided to do a bit of repair work.
I was due into surgery at around 1pm, having fasted from the previous night. I could have killed for a cup of tea.
I was less anxious this time.
I said my goodbyes to my husband, knowing this would be a quicker procedure. Once in surgery the familiar anaethetist arrived. "How about if we have a local instead of a general this time?" he suggested.
Caught on the spot, I said OK.
It was surreal to be semi-awake during the surgery. I could hear the familiar voice of my surgeon, instructing the nurse to pass the surgical equipment.
I awoke feeling far fresher than I had from the general.
I happily devoured the offered sandwiches, questioning the nurse as to whether I would have had them after my last procedure. She said they were always offered. I had no recollection.
The next day I was dropped at my surgeons for a post-op check up.
He removed the eye pad. "You have a bit of a bruise," he warned.
I then headed home, It was not too far from home and my eye immediately felt so much more comfortable.
I had 17 stitches. He had undone some of the stitches, tightening the graft. I now had 20 stitches.
That sunny last Spring day I felt I had a bit of a spring in my step.
Monday, September 24, 2012
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.
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.
Wednesday, September 19, 2012
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.
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.
Monday, September 17, 2012
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.
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.
Sunday, September 9, 2012
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.
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.
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