Feeling really nervous now

[chris1972as]

Hi all I was just wondering if anyone could fill me in on the information i seek, basically three weeks ago i was informed I would need the first corneal graft and it all happened so fast from being told the risks to practically shown the door, in a kind way though. How do they go about contacting you for the operation? Do you just get a date through the post, such as so many months time or do they just pratically tap you upon the shoulder and ask you to attend the hospital for the operation? Would be much grateful if somebody could enlighten me

[Andrew MacLean]

Chris

I guess that the details will vary from hospital to hospital, but I am happy to share my own experience.

Firstly, nobody shuffled me out of the door. When they decided to offer my first graft the consultant talked to me about what he wanted to do and asked if I had any questions. I said that I'd need a moment to marshall my thoughts, so he let me return to the waiting room while he saw the next patient. Back in the waiting room I had some questions: would the surgery guarantee good vision (no it would not), would the surgery be full thickness (PK) or partial thickness (DALK) (he couldn't say), how long would the recovery period be and would I need to take time off work (recovery from surgery and any restored sight would take around a year, possibly eighteen months and yes, I would be off work for about six weeks).

I asked if I could mull over what I'd been told. Yes, back to the waiting room, another patient and I was invited back. More questions asked and answered and I agreed. The consultant was going to be moving jobs and his successor would perform the surgery. I should make an appointment to return to the clinic in two weeks to meet the new consultant.

I did and I returned. The new consultant asked me if I had any questions. I did, they were asked and answered. He got out his diary. "When would be a good time?" Truthfully, the answer was never, but any time would be better than none. He suggested December. I agreed.

A letter arrived from the hospital. I should go for a pre-theatre check and this would include an ecg because of my venerable age. I attended and passed the exam.

I was told to present myself at the ward on the designated day. I would be help overnight and would attend a 'day 1 clinic' next morning before being released home. I turned up and went through the admissions procedure. In the ward I was shown to my bed and given one of those 'theatre gowns'. I changed and climbed onto the bed. The anesthetist came to see me. Was there anything he needed to know? Yes, I have Apnoea and I had my CPAP machine with me. I should bring it to the theatre and the nurses in the recovery room would make sure that it was used as I came out of the anesthetic.

Next the consultant ophthalmologist came to see me. He would try a DALK, but may have to do a PK. In the end I woke to find that I had a PK graft, my own endothelial cells were too badly damaged to make a DALK viable.

When I was ready to be transported to the theatre, a nurse brought me a huge cardboard box that was emblazoned with the motto (in large friendly letters) Human Tissue for Transplant.

I carried this into the holding area and then into the anesthetic room. I was still holding it when I lapsed into sleep.

When I awoke I was breathing through my own CPAP machine and was wearing a clear plastic eye shield.

The surgeon came to see me and assured me that everything had gone well. He had performed Penetrating Keratoplasty and was confident that I would have good sight when the new tissue had stabilized in my eye.

His confidence was well founded. He went away for lunch just as mine was being served. I think his lunch may have been better than the one I enjoyed, but could not have been enjoyed more.

Every good wish

Andrew

[chris1972as]

Thanx Andrew for the detailed procedure. I think I slightly exaggarated when I said i was shown the door in a kind way, just that he told me this was the best way forward for me, called me a sceptic for not agreeing before, please note i was nervous not a sceptic. Told of the risks then asked to agree which I did then he told me to see a nurse but not before telling me he should be able to do the operation within 4 months. And that was it, I have been sending emails to the hospitals liason team who have been asking questions for me, they stated i would be in hospital as a day case and that i would be off work for three weeks only, but i cant help but feel it would be longer as i do a job with powered tools, knifes and so on and they are operating upon my right eye first which is the best of the vision this being because of zero tolerence to contact lens though i do wear them with great difficulty. something about them rubbing the inside of my eye lids and causing swelling. Thanx again Andrew

[longhoc]

Hi Chris

Just to say, I'd treat any estimates for when you'll feel able to be back to work with a huge dose of scepticism based on my experience. Not that you'll be out of action for months and months -- only that the professionals do seem to err on the optimistic side of their assessments from what I found. Their definition for returning to work is apparently based on not actually doing any harm to your graft -- as opposed be being able to perform effectively in whatever work you do. You'd be fortunate indeed to have an immediate post-operative result which gave you decent vision straight away. Certainly, I'm a fair bit below my previous best-corrected vision standard (although my uncorrected is much better than before). So a visually demanding job may be take a little time to get back into while your vision gradually stabilises. Might help to think ahead about what you can do to, basically, manage with one "good" eye.

For me, a successful outcome with my graft is far more important than any short-term work considerations. I've got to live with my eyes forever. Someday, I'll not need to work any more. So I have to make a call about what's really critical. Easier, of course, said than done because inevitably you've got other pressures on you.

Let me know if you want any specific info about the procedure as it is all still (relatively) fresh in my mind.

Cheers

Chris

[ralphg]

Happy to share my experience. I had a full thickness transplant in my left eye in November 2010

I was contacted about 6 weeks ahead and given a date for the transplant.

I had to attend a pre op review about a week in advance where I was asked a lot of questions and had a few medical checks carried out (blood pressure etc.)

On the day of the transplant I was not allowed food after 0700 but allowed clear liqueds up to around 1000.

I attended the day surgical unit at the Luton and Dunstable hospital. On arriving I had to fill in some forms and have some medical checks done.

Most of the people in the unit where only there for the day, as I was going in for a more significant procedure and staying overnight I had to change into a surgical gown (I was the only one in the place wearing one which was slightly amusing).

One of the consultants staff came out and checked my details, then draw a large arrow over my left eye in marker pen.

I was taken through by a nurse and set up in the Anaesthetists area where I was connected up to monitors and had a needle put in the back of my hand. I was given something to start relaxing me (although I didn't really notice anything and I will confess I was feeling pretty nervous)

After a short wait they told me they were ready for me and and they were going to give me the anaesthetic. At this point I hear the beeping of the heart monitor get quite a bit faster:-)

Next thing I knew I was waking up in the recovery room with a pad and plastic patch over my eye.

Spent the night on the ward and then saw the surgical consultant in the morning, he removed the pad, checked the transplant and decided to fit a 'bandage' contact lens. prescribed a combination of antibiotic and steroid eye drops and told me I could go home.

I couldn't really do much for the next five weeks. Two of my stitches were leaking slightly and the consultant kept refitting the bandage contact lens to deal with this. Also, to be honest, I was really tired for about the first three weeks. Saw the consultant four times in that period to check on progress

I had five stitches removed after about seven months and I have seen massive improvement in the vision of the transplanted eye. I still have seven stiches in and am not due to go back until early january. At the moment they are talking about letting them dissolve on their own over the next twelve months or so.

Is it something I would do for fun? No, absolutely not. But it was a well managed and professional process and nowhere near as bad as I thought (feared) it was going to be.

Good luck with your transplant

[chris1972as]

Thanks every one for sharing your stories, I realise the graft is possible the only way forward for me now, realised that saturday while at a football match and noticed how poor my vision was there, well cheers, just waiting for my appointment coming through