Ann is married and is a member of the Fuch’s Friends-UK online support group which is an autonomous part of the world-wide Fuchs Friends online support groups . She was born and lives in the Great Britain seaside Town of Bournemouth. Ann spent most of her working life in secondary schools assisting teenagers with their special educational needs and also brought up her two (now grown up) children during this same period. During many years she travelled with her husband to quite a few far off lands. They recently bought a touring caravan and, with a rescue dog, will be off to sample the delights of the surrounding countryside as soon as spring arrives. She is lucky to have had her DMEK/Cataract operations on both eyes done by amazing surgeons with wonderful results. I’m sure you will find her story interesting.
Ann’s DMEK Blog: Part One
The operation I had was Left Phakoemulsification, Left Keratoplasty, posterior DMEK. We stayed in old street Premier Inn just across the road from Moorfields Hospital. We are parking in upper street car park at the Business design centre Islington 5 mins by bus to the hotel and hospital more info available if needed
I am 69 years old and have had diagnosed Fuch’s for at least 10 years if not longer. I also had two cataract’s on each eye and I was being seen on a six monthly basis at the Royal Bournemouth Hospital. Last Christmas I could no longer read a number plate at the required distance with glasses so I stopped driving, this was a real lack of independence which I would like back (but you do meet a lot of nice people at bus stops!) My prescription glasses for short sightedness had not been changed for about 3 years as the optician could not improve on them due to the Fuch’s and cataract’s.
Bournemouth hospital do offer operations now for Fuch’s but not a Dmek. The consultant there referred me to Moorfields as I had read up on the operations offered (mainly from Fuchs web site) and after a discussion with him he said that I was suitable for Dmek and he agreed that this has the most beneficial results. I was referred in February had a letter had a letter from Moorfields in April giving me an appointment in Mr Allan’s clinic for the 3rd of July. .
On the 3rd July appointment I was found to have had a bleed at the back of the worse eye (I didn’t know anything about it! ) The doctor who was examining me went and got Mr Allan (this is quite normal as his clinics are always on a Friday and he see’s people in the morning and operates in the afternoon) but he is always around advising his staff and meeting us the patients and a very nice man he is as well, a great confidence booster!
Mr Allan explained what was on offer I said “yes please” he said he would personally do the operation and sent me for pre op tests. I was in Moorfields for about three hours that day I didn’t have to wait for more that about ten mins at the start of the appointment and the rest of the time I was having all kinds of test’s none painful. One amazing thing was a new eye lens made just to suit my eye, the nurse told me that a few years ago a standard lens was put in but these days it’s made there and then just ready for your eye op.
I had the operation on the 11th of September 2015.
Ann’s DMEK Blog Part Two
Just a point I forgot to make on the first instalment. Make sure all the letters they give you at the first hospital appointment have the correct hospital number and name for you. Mine didn’t and I didn’t check at the time (more things on my mind!) This means several phone calls to get it sorted and can hold up your appointment letter not to mention I didn’t think I looked anything like a 103 year old male who the number belonged to! I did get a letter of apology but it is a very busy hospital and mistakes do happen. As long as it is only the admin side of course!
September the 11th operation day.
I had to be there for 12 noon and as it was a local anaesthetic I was able to eat and drink normally before. I saw various staff to sign paperwork and have blood pressure taken usual sort of thing I then had to put on long support stockings very tight and a comical struggle for me and a hairnet (a fetching sight all round!)
I walked to the operating theatre which consists of an outer room with a bit of a scary looking bed In it and a hive of activity going on in the actual theatre beyond it. There are lots of staff involved and they were all lovely for want of a better word. I asked for a mild sedative at that point as lying flat for any length of time is a bit uncomfortable they were fine with that.
I really drifted through the next two hours in fact I fell asleep at one point but got woken up I can truefully say from the start and finish I was only slightly aware (and that was just a sensation) of perhaps, the point at which my eye was clamped open. I am a bit claustrophobic and they told me they were putting a sheet over everything except the bit they were going to be working on and I didn’t even notice that. Your blood pressure is taken by a machine off and on all the way through which you do notice and you can hear Mr Allan explaining the procedure to his trainees but they seem to be all behind you and the lights are bright.
The highlight of the op to me was hearing that the graft tissue was very good I did put a thumb up at that point as I know they don’t want the patient to join in the conversation!
With the op over I had to be transferred to a ward and kept lying flat for an hour. I was the only person in there as I don’t think they do more than one transplant op, all the other patients in the room you wait in seemed to be cataract’s and short op’s.
Mr Allan and two other doctors came after the hour and it was back to the usual optician type machine. He decided there was too much of something behind the transplant tissue which is quite normal I think. He anesthetised the eye with drops and took it out with a needle sounds awful but really quick and over before I knew it was happening.
I went back to the Premier Inn with just a plastic shield artistically taped over my bloodshot but not bruised eye. I got a few strange looks as it’s very busy round there but I think the people are more than used to the strange sights coming out of Moorfields.
Ann’s DMEK Part Three
12th September
Spent the rest of yesterday lying flat except for going down to have a meal with sun glasses on (the staff in the hotel excellent put the drops into their fridge and got them out when needed) You do have to sleep with the plastic shield over the eye for a week or so.
Mr Allan had advised that it is very beneficial to spend at least four hours a day flat for three days. We had to return to Bmth the next day by coach not the best scenario when you have drops to put in and are supposed to be lying flat.
The drops were:- CHLORAMPHENICOL 0.5% FOUR TIMES A DAY DEXAMETHASONE 0.1 EVERY TWO HOURSMy eye was just blood shot and it was quite difficult to see to put the drops in myself as I was worried about poking myself in the eye and ruining the graft so my husband has been eye drop expert and time keeper. The drop amount is quite generous so if you do have to do it yourself there is enough for you to drown the area and at least some of it will go in.
Just hazy vision in the transplant eye and I now realise how poor the vision is in my other Fuch’s eye and that was the best one out of the two! Not a wonderful night’s sleep as I hadn’t got the plastic shield taped on right and every time I turned over it woke me up but no problem I will get it sorted.
13th September
The eye is not painful just a bit uncomfortable so I’m taking some painkillers as I do get a lot of headaches normally and doing this is taking the edge off and hopefully keeping a headache at bay. It is my birthday (what a fantastic birthday present the graft is) I can’t actually focus to read the cards but my eye did clear a bit off and on in the afternoon and I got a real shock I could see really bright colours in the garden and definition. It doesn’t last but it’s snapshot of what’s to come!
14th September
Better nights sleep and better vision first thing but it gets less if you get carried away and don’t rest it enough. I also find it difficult not to screw my eyes up after the drops and that does hurt a bit a sharp enough lesson to make you think first next time. Better vision in the afternoon again if I cover the grafted eye I really only see the world in soft focus really blurred but covering the Fuch’s eye the new one is sharp and bright which just shows me what I was missing. I am so glad I was able to have this done.
15th September
A bit of double vision today but it is very early days and as I have been told it will take at least another six weeks before the new eye sorts itself out.
16th September
Patchy vision first thing but not double my Fuch’s eye feels ‘dull’ and I think is causing the problem because my eyes are not working together. It does make me feel a bit off balance but nothing awful. I can read my notes a bit better now as I couldn’t really see at all well when I actually wrote them. The eye is still bloodshot but that is disappearing bit by bit and I can see that it now has the same pupil shape as the other one.
Fri 18th September
Back at Moorfields for a check up, this took under two hours. My eye sight was tested first; I could read the first line and could guess bits of the second but that was it. The pin hole test I could see a bit if I screwed my eyes up hopefully this will be improved by the next time I go . I was told that all was going well there is a small piece of graft which is not in my vision that has not ‘stuck’ yet but Mr Allan says as the graft flattens down that will hopefully resolve itself. I am now down to a drop of Dexamethasone every 4 to 6 hours 4 times a day.
27th September
Big jump in time scale, the eye is progressing well but I know from Bob’s expertise on this web (which I like others really thank him for) site it is normal to have this wonky feeling as the eyes don’t match. I have a check up on the 30th of October and I am looking forward to that to ask for advice re getting spec’s to sort it out.
Ann’s DMEK Part Four
My follow up appointment was on the 30th of October (all Fuch’s clinics at Moorfields are on a Friday, the mornings are check ups and operations are done in the afternoon)
The doctor on duty (Mr Allen the main consultant who did the op on the NHS was on holiday) was delighted with my graft and said it was a text book success. He also told me the steroid drop’s I am on Dexamethasone will normally be needed for about a year i.e
- every 2 hours (not in the night) for the first week
- then four times a day for 3 months
- then three times a day for 3 months
- then twice a day “ “ “
- then once “ “ “ “ and hopefully finished but one drop might be needed from then onwards.
I had a short type of eye test on this appointment and was told I would have a more in depth eye test (a refraction) on my next one on the 11th of December. I asked if it would be okay to see my own optician (who initially diagnosed the Fuch’s in 2009 when I changed opticians) as I am having a lot of vision disturbance with the discrepancy between the two eyes and didn’t really want to wait another six weeks if specs would help and he said that would be fine. He also said that my other eye is scheduled to have a Dmek in February.
I saw my own optician yesterday and things are looking great, she said the graft looks fantastic to her and the eye is very clean with no debris at all. I am no longer short sighted in that eye and as I have been wearing glasses for short sight since I was about five years old that is fantastic. She has also managed to sort me out specs that actually balance my sight and I can even read a number plate at the correct distance in them so getting back to driving is on the cards!. In fact she says my eyesight is as good as it was in 2009 when I first went to her.
I have to wait a week for the specs so still wearing my pained expression. My eye sight is actually more difficult to live with now the graft has settled down but it’s just down to the discrepancy between the two.
Next appointment 11th December 2015
SECOND OP MAY 11TH 2016
Not always plain sailing between ops as my eyesight was all over the place with Fuchs in one eye and the other on constant change. Its obviously hard work for the brain to take it all in so in my case the first transplant was fantastic and all to do with it is going well but I didn’t realise what a challenging time was ahead re the difference in eye sight, thank goodness for a brilliant optician.
The second op also fantastic and the no real problems re actual eye healing but a couple of vision disturbing migraines in the first two months and after the sixth week check up I was advised to get specs to sort that out even though I know I will need different ones in next to no time. The specs have improved things and I am legal to drive again but my eyes are still changing which makes me feel ‘a bit all at sea’. I have put all this down not to discourage anyone ( and I’m sure lots of people have very little problems) but just to reassure anyone else who feels the same I’m improving all the time and I reckon after the next Moorfields check up in December I’ll have forgotten all about the ‘at sea’ feeling.
Thank you for reading this. I do hop it helps each of you.
Ann W