possible graft

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mike scott
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possible graft

Postby mike scott » Sat 10 Mar 2007 12:14 pm

hi everyone
sorry i've not posted for a long time but i still been thinking about you all non the less :D .
well whats new huh?
well for those who may remember i have been perservering with my left eye and its various lenses since last july, at which point i made the decision that after only a few days if that of relevent comfort from a new lens i was then back to a situation of 1 days good wear followed by three days of excruciating pain that i wouldnt bother wearing a lens in my left eye anymore until something really good for me was discovered. manchester royal eye was really good and approached a small independent lens manufacturer where a lens was custom designed for me. how ever that was also to no avail with comfortable wear measured only in hours and a few at that at best.
so on 14 december the hospital drew a line in the sand and declared that my left eye is intolerent to any more lens wear :( . they then put me provisionally on the corneal graft list pending my decision after further consultations on whether to have the operation or not.
i have two appointments this thurs, 15 3. 07 . 1 is my normal check followed by the 1 with my consultant to discuss the pro's and cons of a graft.
at the moment i am cr******** myself :shock:
i am currently managing very well with just my right eye apart from the occasional blip where i have to take a few days out to rest even that from overdoing it. so the thing that is on my mind at the moment is whether to continue managing in what i think is a very good way and to hold the graft for as long as possible or to just bite the bullet so to speak.
i realise that these decisions are personal to us all and that we are all affected differently by KC, however i would really appreciate as many different view points as possible to this dilemma and your own experiences around this area.
1 of the things that i hoped would happen is that my sight would have been so bad that a graft would have been the most logical choice and a forgone conclusion , but as i have good vision in my right eye and i am managing with that, i dont feel that that is the case. how ever i realise that if my right eye should fail me as well then i would have serious problems.
or does anyone think i'm just in denial still ?

thanks for taking the time to read my post
mike :P
onwards and upwards

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Andrew MacLean
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Postby Andrew MacLean » Sat 10 Mar 2007 1:52 pm

Mike,

I waited until I was legally blind before having mu first graft. Here is a question; in the eye that there is a potential graft, is there anything else on the horizon that will give you good vision?

From your post I'd say that your answer is already "no".

So if there is nothing left to lose in that eye, why not bite the bullet and let them take away your diseased cornea and give you a new one that somebody has donated for you?

Andrew
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mike scott
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possible graft

Postby mike scott » Sat 10 Mar 2007 2:22 pm

hi andrew
thanks for your reply
i understand that you waited until you were legally blind before having your first graft. was that a conscious decision to wait or would you have had the graft sooner looking back, rather than waiting to get to that stage.
you also say your "first graft". does that mean you have had grafts in both eyes or repeated in one? if it has been repeated , why was that?
i'm conscious of the fact that surgery may be advised and high success rates quoted by my consultant, but he wont be living with the consequences of everything involved. ie; a liberal positive picture may be painted when the reality can be much harsher

mike
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Possible graft

Postby Anne Klepacz » Sat 10 Mar 2007 3:37 pm

Hi Mike. I'm inclined to agree with Andrew in that it sounds like you have nothing to lose in 'biting the bullet'. My experience was a bit different to yours, in that both eyes were badly affected by KC. So when I had my first graft done, I was then dependent for quite a while on the other eye which was deteriorating fast (as I'm sure you've been told, it can take up to a year or more to get reasonable vision back in the grafted eye). So I would have been really glad of a 'good' eye to fall back on in between the two grafts! Of course, this did make the initial decision much easier for me - I really didn't feel I had any option but to go for it! You do have the advantage that you can decide on the best timing for you - as you say, only you can make the decision. A lot depends on how stable the KC in your other eye is. Good luck!
Anne

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Re: possible graft

Postby Andrew MacLean » Sat 10 Mar 2007 3:38 pm

mike scott wrote:hi andrew
thanks for your reply
i understand that you waited until you were legally blind before having your first graft. was that a conscious decision to wait or would you have had the graft sooner looking back, rather than waiting to get to that stage.
you also say your "first graft". does that mean you have had grafts in both eyes or repeated in one? if it has been repeated , why was that?
i'm conscious of the fact that surgery may be advised and high success rates quoted by my consultant, but he wont be living with the consequences of everything involved. ie; a liberal positive picture may be painted when the reality can be much harsher

mike


Mike

Yes, it was a conscious decision on my part to wait until "I had nothing to lose" before having surgery. I had not really expected to lose the sight of both eyes at the same time! :oops:

Had I known then what I know now, I should probably have had a graft in my right eye about 20 years ago; but I do not want you to think that I regret the decisions I made. They were made on the basis of the best information available to me at the time.

I have had a graft in each eye. The first one was done in December 2003. This was a PK. It took a long time for me to recover from this surgery because of a bad reaction to the topic steroid that I was using.

The second graft (October 2006) was a DALK. In February 2007 I had a cataract operation on my PK eye.

I know it can be hard to get your head round the possibility of having part of your eye removed and part of somebody else's eye "patched" into the place; but success rates are high.

When I went for my "decision" consultation with the doctor, I took a pad with all the questions I could think of. I went through the questions one by one. These included questions like "what might go wrong?"

The doc was wonderful! He did not mind a bit my asking all my questions. Three times he let me go back to his waiting room to marshall my thoughts and think of other questions I might ask. In the end I felt confident to say "yes" to the offer of a graft. I gave informed consent to surgery. Nothing that has happened since has made me regret in the slightest the dicision I made.

Andrew
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Anne B
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Postby Anne B » Sat 10 Mar 2007 3:58 pm

Hi Mike,

I remember being where you are at the moment, and it is really a hard decision to make.
My right eye was badly affected with KC and my left eye is not very good.
I had a graft on my right eye in November and i have to say after all the worrying about having a graft it is the best thing i ever did.
The next morning after having my Graft my surgeon said very casually that he had managed to remove all the KC, and at that point i realised i had made the right decision :D
One of my biggest fears was that my vision would be worse after the graft. but it wasn't and really how much worse could it be?
at the moment i feel like things can only go forward. As long as i look after my graft ,use my drops when i have been told to etc.

I hope you manage to make your decision soon :D

Anne
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Postby GarethB » Sun 11 Mar 2007 8:04 am

As the others have said, you have nothing to loose yet the final decision is yours and yuo can back out at any time.

The surgery is not as bad as you think, you will come out wondering what all the fuss was about.

Yes your eye will be sore for a couple weeks after, but after that things usually get more comfortable and the vision slowly comes back.

Ask the Docs loads of questions and only you will know when you are ready.
Gareth

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Postby ChrisK » Sun 11 Mar 2007 3:48 pm

Hi Mike,

I was in a similar position to you last year. A good left eye and a legally blind right eye. I was due a transplant last year but due to a heart problem I had to postpone my graft until after a heart operation.

Although disappointing I was fairly happy to continue with my good eye.

However, over the year my bad eye continued to get worse and I became more light intolerant. Like you I also suffered bouts from straining my good eye.

Forward to just over last week and I finally had my graft, this time having a PK rather than a DALK as over the year my cornea had become much thinner.

Now I'm at the start of my recovery I can't help but look back with a little regret that I'm not a year further into my recovery.

I know we are all different and it is a difficult decision to make. However, your eye is not going to get any better and it remains in a fairly useless state. :( I fear that when our KC becomes so fatal that the wait and see stance just serves to prolong the inevitable. Certainly the strain you are putting on your good eye is not welcome.

My experience of my graft so far is that it isn't nearly as bad as feared. The rubbing of the stitches are not pleasant and my eye is still light sensitive. In fact since my graft my eye has been closed most of the time due to irritation.
However, I'm only 10 days into a graft and I've already started using my computer more again. My sight is an approvement on pre graft, although I have a long way to go. I'm not nearly as light sensitive and my eye is no- where near as irritating as it was just a few days ago.

All in all, I'm delighted I've had my graft. Pre graft I was treading water, post graft I have hope of once again having two working eyes.

p.s
Can you do a KC version of your hit "The whole of the moon" ...... and 15 others.

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mike scott
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possible graft

Postby mike scott » Tue 13 Mar 2007 11:57 am

hi everyone
well thank you for all your replies , all your support is very welcome.
chrisk
i have been paying very particular attention to your posts and especially your blog, well done on your early recovery, i hope it continues unabated :) .
andrew and jayuk and john and both annes
i have also taken the time to read in depth your graft blogs.

hmmmmm

although you all seem to have had different experiences with differing degrees of outcomes
the underlying theme seems to be that you are all pleased with your transplants.

however i dont know if i'm very brave or not, actually i admit i'm a wimp :), i have been pretty lucky so far in that i dont really consider myself to have had any serious health problems in my life other than a broken wrist once and stitches occasionally ( KC of course) but you learn to live with that.
why am i wimp? well i'm the type of person who faints at the sight of needles and blood, and looking at various pictures of eyes and stitches in them made me very nauseous to put it mildly :D.
am i in denial?
because i've always found ways of coping with KC and the limitations it can impose on our lives from time to time, and that i have done so more or less independently i had almost convinced myself that i could carry on like that forever, almost invincible like :).
the word "graft" has always been used and that has always made it sound better. what i mean is when the word "transplant" is used then that sounds bad. but indeed a transplant is exactly what it is, and all the serious dangers that come with it.
i am trying to force myself now to get my head round the idea that i'm not dealing with something that i can easily shake off or "deny" like a common cold, and to try and accept that maybe i'm not that invincible.
i have always been fiercely independent and have lived by myself for the last 3 yrs other than my dogs, i wouldnt say this was by choice initially, moreover that the strain of my KC put too much pressure on my partner and she chose to bail out, (some people have that luxury i suppose , we dont).
after reading so much information recently , it has occured to me that i will need a lot of support and looking after initially and from time to time after a possible "transplant" and this also scares me.
why?
well having to rely on people to "look out" for me when i have discovered that people who i have held dearest to me in the past have been unable to stay the course.

anyway my appointments with the hospital are on thursday so i wont throw myself into complete panic until after then, however i do realise that i wont wake up suddenly and it will all be a big mistake , i have to face this , another, challenge , head on , and i will,.
if , as i think , the inevitable is recomended then i will be a very frequent visitor to this forum, our support lifeline.
i would also try to keep you all posted with events as they occurr. a blog diary if you will.
chrisk. your blog is an excellent idea and i will follow your entries on progress and draw on your experiences for inspiration if i may.

see you all soon

mike
onwards and upwards

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Andrew MacLean
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Postby Andrew MacLean » Tue 13 Mar 2007 12:08 pm

Mike

All the best on Thursday. Remember: you are in control of your treatment!

By the way, the word "wimp" does not come to mind as I read your description of how you have coped alone with the limitations imposed by KC. Far from it; it seems to me that you are a man of extraordinary personal courage.

I agree the word "graft" sounds softer than "transplant". You are also right, a "transplant" is exactly what is being discussed; this is not tissue that is taken from one part of your body and grafted onto another. Yet the word "transplant" also holds the wonder of the whole experience: somebody else has agreed to allow tissue from the body of someone they love to be used to give us sight. That's the wonder of it!

Andrew
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