In my last blog I left you in 2008 when I had just had my Zoomtext installed on my computer at work and they had agreed to let me have extra screen breaks. Well it is now 2012 and nothing has really changed with my eyes and I have just been plodding along getting on with thing’s. To be honest I haven’t even been attending the hospital that often apart for one particular visit in 2008 to Ninewells in Dundee to see a lady who specialised in KC and she wanted me to attend the hospital every week for some trial. I didn’t agree to this as I don’t drive and work wouldn’t have agreed to it anyway. She did do a Topography which was the first I ever had and I must say it was very interesting to see the eye in that way.
May 2012 – Hydrops
I hadn’t even heard of Hydrops until now it came with no warning and I had no clue what was happening. I was is extreme pain and my eye was watering badly and could not open at all. I went to the local A&E and waited for almost 3 hrs to be seen. They had a look and they hadn’t seen this before either and didn’t know what was wrong. They went away and phoned the on-call eye Dr who diagnosed it over the phone and said he wanted to see me first thing the next day at a different hospital. When I left the treatment room three staff members were huddled round a computer screen looking at a picture of Hydrops as they seemed to find it fascinating for some odd reason. I now know that Hydrops is a very rare Keratoconus complication, so that might explain their interest!
I went to see this other eye Dr the next morning and he confirmed what he suspected that it was Hydrops. By this time I was in a great deal more pain and my eye was very cloudy. I could hardly open it as it was very light sensitive. He gave me some Sodium Chloride drops and Lacrilube for at night. The thing with this condition is you need to have a great deal of patience as you can’t rush the healing time. It can take MONTHS. Your brain does seem to adapt very quickly to using just one eye. I was healed after 8 weeks but the corneal scar was really bad and was not going to improve. If you are very lucky this scarring can actually improve your vision but sadly not in my case. My vision in my right eye was now totally useless therefore we started to discuss having a graft done. As with many people who have Hydrops, the episode sort of does you a favour in that the graft waiting game is speeded up.
October 2012 – Going on the waiting list
The Dr discussed my options and because the eye was so bad a full thickness Penetrating Keratoplasty was my best option. He said the eye bank had no shortage of tissue at this time and I would probably just be waiting 8 weeks.
November 2012 – The call I had been waiting on
Its now the 8th of November a week before my 38th Birthday and the hospital called and asked if I could come in on the 12th for my pre-op assessment and then have the transplant done two weeks later on the 26th November.
I went in on the 12th for my pre op checks and that in itself was interesting the fact the Dr I had said out loud, ‘I cant find your pulse’ and could not get any blood from me and had to send me to a different department for them to do! Apart from that all was well and just had a two week wait now. It’s the morning of the op and to say I am nervous is an understatement. I arrive at hospital for 8am and have all the checks done. Nearly didn’t get the op done as I had a high temperature but it was borderline so they proceeded. I was first on his list so was in the anaesthetic room at 9am.
I was very nervous as this was my first ever operation. I was also quite upset at it was 17 years today since my dad had passed away. The last thing I remember before going under was the anaesthetist wiping away my tears. The operation itself just took 1hr 30 mins and went very well. I must have been enjoying the good sleep because it took them over 30mins to wake me. When I did awake the first thing I saw was four nurses round my bed saying ‘stay awake for us’. Turns out I also was very Tachycardic (rapid heart beat of over 100 beats per min) for about an hour so they had been trying to control that. Don’t let this reaction to the general anaesthetic put you off as it is very rare to have this kind of complication. I did have a very sore head and felt very sick for an hour but fine after that.
After I was settled they took me back to my room to sleep of the anaesthetic. I had no pain in my eye at all. Its now about 3pm and the nurse came in with something for me to eat and drink and then by 4pm she was removing my eye shield and cleaning my eye and giving me my first lot of eye drops. I got dressed and was seen by the surgeon to make sure everything looked ok and I was home by 5pm. I still felt very groggy that evening so just went to bed and slept.
The next morning my eye was totally glued shut and was very hard to clean but not painful just uncomfortable.
I saw the surgeon 2 days later for my first check up and everything looked good. He did warn me I would get sick of the sound of his voice going on about the importance of the drops and he didn’t disappoint. For the first 3 weeks or so I think I walked about with my eye closed as it was very photo sensitive.
By week 4 I can open my eye most of the time now and day by day feels much better. I have now been diagnosed with blocked Meibomian glands that are sebaceous glands on the rim of the eye lid. These glands stop the evaporation of the tear film and when blocked it is like a waxy substance and makes your eye feel very gritty. I have since purchased a MGDrX Eyebag to treat this. Its now week six just now for me and my vision is changing all the time. I don’t expect miracles as at the end of the day the transplant is designed to remove the diseased KC cornea and give you something to work with at a later date i.e. special fitted lenses or if you are very lucky some glasses.
I remain hopeful as even at this very early stage I am getting better vision than I had pre-op.
To be continued…..
3 thoughts on “Keratoconus my story by Wendy, pt 2- transplant time”
Hope this gets to you. I feel like I shouldn’t even complain about my bilateral cross-linking every time I read about a corneal transplant on here. Yikes! Interesting to note that you have meibomitis (MGD) now. I’ve had this for about 6 years and it seems to be related to ocular rosacea in my case. It’s awful! I have some weird type of KC that just showed up in 2011 (at age 37) and advanced rapidly, so the meibomitis preceded the KC. I wonder how many KCers have MGD? I looked up what you’re using, which seems to be the “hot compresses” the doctors tell us to use here in the US, which did nothing for me and actually made things worse. I get IPL treatments for the meibomitis now, which are “off-labeled” here in the US (not sure if available elsewhere) and are the latest technology. Pricey, yes, but apparently worth it. I’ve done 4 treatments with 1 more to go and apparently my glands look great (so says the doc – I can’t see that well!), but due to my loss of tears post-CXL, I don’t notice much. I wrote a post (partially) about it on my blog, if interested. Odd disease, no? Best of luck with your transplant recovery/KC/MGD and everything else!
Thanks for your response Alisa!
Thanks Alisa. You are allowed to complain we all do it, me especially. My MGD just came on after the transplant but I don’t think I helped it as I wore my eye shield at night in bed for the first 6 weeks and helped those pesky germs breed. It is an odd disease and varies so much patient to patient. It is great being able to talk to people that really understand for real not just what they have read in a textbook. All the best with your treatment. Keep in touch and let us know how you are doing.