Fed Up, Upset and Frustrated!!!

[Eileen1359]

Sorry about the subject but thats how we both feel at the moment

Basically Phillip had cross linking done on 10 February 2011 and for the full week after this was in agonising pain with light and not being able to open the eye properly. At the follow up appointment on Friday 18 February 2011 was told that he had scratch on the cornea - where this has come from who knows as he never had one before. Another bandaged contact lens was put in with antibiotic ointment 5 times a day. Back at the clinic this morning (Monday) and after sitting for almost three hours they didn't even have the right notes so didn't know what he was there for. So frustrating!

Poor lad had to have the lens from last week removed and anther large one inserted after now being told it was a corneal ulcer that he has Back on the antibiotics and then steriod drops from Thursday. Yet another visit to the clinic on Friday where I hope we do not have the same length of wait again.

On top of all this his sight has deteriorated to the point of being practically blind in the affected eye. This is so upsetting as did not expect this to happen especially when he is in his first year at uni and doing so well in spite of everything. He is struggling to look at a computer screen even with the brightness turned to the minimum and this is not a good thing being that he is doing Web Systems Development.

Again sorry about the rant but needed to get it out of my head before I go crazy
Regards
Eileen

[longhoc]

Hi there Eileen

I was here getting on my soapbox about somthing else when I saw your posting... can't really offer anything more than heartfelt sympathy for yourself and Phillip. I know how annyoing, baffling and capricious Keretoconus is -- one minute it's there, but manageable. The next it's having a major impact on your life. People just don't realise -- that can be the worst thing. If you were to say to the man or woman on the Clapham omnibus that you had diabetes or a broken a leg or a perforated ear drum or even a cold, people would understand and be at least sympathetic. But say to people Keretoconus and all you tend to get back is a puzzled look and a vague question "carrot-o-wot-not did you say ???".

Some practical advice: Have you looked at the support for students with Keretoconus on the main page ? Here's the link:

http://www.keratoconus-group.org.uk/pub ... aflet.html

Without delay, contact the university's student student support team (they will have one) and advise them exactly what is going on. It would help enourmously if the consultant and/or optometrist (or even the GP if none of the above) can document in writing what has happened in Phillip's case. Make sure the university gets this infomation. A simple note from the medical authority counts about 10x the word of the person (shouldn't do, but it does). Then ask what adjustments they will make in respect of it. I know that at a time like this the last thing you want to do is get into a burocatic paper chase, but it really will pay dividends. If they (the university) won't do anything, try getting the NUS involved.

Doing this will make sure that what Phillip is having to cope with gets reflected in the course results. Far better to do it as it happens than to get a bad end of year mark and try to retrospectively sort it all out. And putting the wheels in motion will get everyone's stress levels down because you'll be doing somthing pro-active. One of the most unpleasant sensations with Keretoconus is somtimes you just feel like a passenger on someone else's wild ride !

No doubt the usual gang will be along soon to offer more help

Best wishes, take care. Remember too, nothing lasts forever and things will get better.

Chris

[mikkey3023]

Hello there , i understand totally what your son and you are going through i too was diagnosed at 17 years old by the top place in london many years ago , and experienced similar situations as your son , nhs is a wonderful thing great people working for them but from my experience if i could pay to go private i would, nobody wanted KC or asked for it , some attitudes and standard of care in clinics is just not good enough and ive always felt too this disease is not taken seriously at all , get on with attitude is common , my sympathies and best wishes go too anybody who has experienced these issues concerning treatment for KC.

[Andrew MacLean]

Eileen

I am so sorry to hear how difficult things are for Philip. Please assure him that he has our heartfelt sympathy.

Andrew

[Eileen1359]

Thank you all for your kind thoughts. Sorry about ranting before just needed to get it out of my head!

Chris - Phillip's uni are being very supportive at the moment. Most of the work is available on the extranet so he can pick up notes but what is missing is the invaluable face to face lectures and seminars where he usually picks up bits and pieces not in these notes. He has been given extra time for exams earlier this year and can only presume that this will continue. He has also been allowed extensions on his assignments. He is just frustrated as you say nobody knows about KC and can't relate to how he is feeling. His sister is going to take him to uni tomorrow to see if he can manage his long day and I am going to pick him up. Bit of a pain but don't want him driving when his eyes are so uncomfortable.

Mikkey - couldn't agree more that if we had the money and known what was going to happen with follow up care then I wouldn't have had second thoughts and would have gone private. He was diagnosed at the age of 14 although I do believe had his previous optician known about KC would have been picked up much sooner. They keep trying to get orbscan but can't get readings which is why they decided to do crosslinking.

Regards
Eileen

[Gabriela Neal Gonzalez]

Hi Eileen,

I know exactly how your son must have felt when he was diagnosed, I was diagnosed at 15! I noticed you mentiioned you were going for the CXL (collagen cross linking ) treatment? If you are, it really is worthwile! It stopped my eyes from deteriorating further, and I can now wear a normal lens in my stronger eye.
I'd love to hear about your experiences and your thoughts about CXL!
Gabriela.

[Eileen1359]

Hi Gabriela
Phillip had the CXL done on 10 February and so far I am beginning to wonder whether it has been the right thing to do. Before having it he could read the top letter with his bad eye but now cannot see it until it is put less than 2 feet in front of him and has permanent blurriness.

He has now also got a corneal ulcer which is causing pain and extreme light sensitivity. He is on clinic visits every 3/4 days with bandaged contact lens being put in and strong antibiotic ointment to try and get it to heal. It has been such a rollercoaster the past week and a bit that I am now worried that the sight may not return to what it was as the Consultant seemed quite anxious yesterday. Even if it has done what it is meant to do and to slow down the progression of the KC but has damaged his eye sight, it was so not worth it.

Regards
Eileen

[Gabriela Neal Gonzalez]

Oh gosh! That sounds very serious. Where did he have it done? I think I do remember being told that after having the procedure done that my eye sight would fluctuate up and down for a while after because the eye is settling down and getting used to the change, perhaps that is what is happening? I didnt wear my lenses until 6 weeks after my operations to give the eye time to heal. What lenses does he have?

Gabriela.

[Eileen1359]

Hi Gabriela
He has it done at St. Pauls Eye hospital which is in the Royal Liverpool Hospital. Phillip has never been able to tolerate a lens as he only had to wear it in one eye. He has been sort of managing with glasses based on the fact that his other eye gets better than 20/20 vision with correction. Although from the last visit before the CXL we understand that this eye is now progressing as well but I know that he will not go through with CXL on this eye after what he is experiencing at the moment.

The lens he has in at the moment is a bandaged one without a prescription just to protect the eye while they try and get it to heal. Starting on steriod drops tomorrow as well as the antibiotic ointment.

I really do hope that he gets some more sight in the eye as he seems to have lost a lot of the confidence that he had found since starting uni in September. I do hope that he won't go back into himself as he really is a lovely caring, fun loving young man.
Regards
Eileen

[Lizb]

Are you seeing one of the registrars or are you seeing the consultant when you are attending appointments? I have seen the consultant every time i have been to the clinic at St Pauls's. I usually see one the registrars first but then i see the consultant, the first time i had to ask to see him but now see him each time, since i have had intacs.

I have also had long waits at St Pauls but i dont have a problem with the long waits, just take something to read/listen to in the meantime. It means that they staff are taking their time with me and others; at previous hospitals i have been seen on time but ushered out of the door by the time i have sat down.

Dont lose heart immediately, it can take 3-6months for the eye to heal after CXL and during that time vision will fluctulate.