Tim from the UK shares his inspiring keratoconus and corneal graft story:
I’m 27 years old and live with my partner in Swindon, Wiltshire, UK. We are currently planning a wedding for next year, which is really exciting! I run my own IT business for the last 6 years and am a self confessed workaholic.
Working in IT and often on computers for up to 16 hours a day at times has always come with its challenges and having keratoconus, I’ve always tried to not let it affect what I do in life.
So its been nearly 2 months since my Full Thickness Corneal Graft. I thought I would share my experiences so far for anybody waiting for a Graft or considering one and a summary of my journey from when I was first diagnosed.
Of course everyone has a different experience and it will affect each person in different ways.
What Did Keratoconus Mean to Me?
I was diagnosed with Keratoconus in 2009 when I was 20, it was first diagnosed at a routine eye test at a leading UK Opticians. I was given the option for the opticians to fit me with a RGP lens or to be referred to the Hospital. I chose to be referred to the hospital, and this gave me time to read up about the condition myself.
I was referred to the hospital and after various scans and tests was advised that I should see the contact lens fitter to get a lens for my bad (Left) eye initially. I attended various appointments with the fitter and after the 5th-6th appointment was feeling frustrated, I could not get the lens in my eye myself without discomfort and a long 30-40 minutes of trying, the fitter also struggled to get a lens in my eye because of my natural bodily response to pull away every time she tried.
I found her attitude towards me and lack of sympathy towards the difficulties I was having very unprofessional. At the time I gave up and just left it how it was. I managed the next 5 years with the condition by making do and ignoring the problem. I urge anyone not to do the same! KC requires patience and time to sort out properly.
In 2014 I realised things were getting worse and asked for a referral again, this time to Bristol eye hospital. This meant a hour and a half journey but I hoped that the journey would pay off.
I was seen in October 2014 by a consultant after scans and tests his response was that a Graft was now the only option for my bad eye and it had progressed to far for any other treatment. His words were that he ‘rarely sees Keratoconus as advanced as mine especially with so much scarring on the cornea‘. I was put on the waiting list for a transplant and referred to a Lens fitter for my good eye.
Firstly my experience with the new lens fitter was 100 percent better. On my first visit they were able to fit a lens within minutes without problems, and the way that they approached the fitting I was made to feel a lot more comfortable and things were explained very well. I am still in the progress of fine tuning a lens but I am getting better and being able to fit a lens myself and feel a lot more confident with the whole process!
Corneal Transplant Time
My cornea transplant was scheduled in for the 17th December 2015. I found the built up and the waiting the worse part of the whole experience.
The 2-3 months prior when i was given a date was awful. The biggest stress was having the time off work. For me as I own my own company, having to have time off means having to employ people to cover me, so it was a lot of preparation and long days followed by long nights. I was told that i should only need 2 weeks for recovery, as I don’t have a very physical job.
I must have asked this question to different people during the process several times for reassurance. In the lead up to the operation i was asked to take part in a study by the hospital, they are currently carrying out a study to investigate the causes of Cornea transplant rejection. This involved me having further tests (bloods and tear samples) at the pre-op and additional tests carried out on various follow up appointments for the next 5 years.
Giving Something Back
I agreed to this in the hope that they can make future transplants more successful and I felt like I was giving back a little bit having just accepted a donated cornea. I also decided to become an organ donor myself, I had not really thought about this much before but I realised that if I am prepared to take I would be a hypocrite to not offer up my body when I die. (Did you know even recipients of donated corneas can donate these, and all parts of the eye can be used after you have passed?)
So the 17th of December came and at 5 am I was awake and getting ready for the travel to Bristol for a 7:30 arrival time. When I arrived at the hospital I was directed straight to the ward and checks were carried out, I met with the surgeon and the process was explained again measurements were taken and an arrow drawn on my head to indicate which eye they were to work on!
First on The List
I was the first on the list for the morning and shortly after seeing him I was taken down to theatre. This was my first operation and so the experience was rather daunting, however all the staff were very calming and very professional.
I woke up from the anaesthetic a couple of hours later with an eye patch over my eye just feeling a little tired still. I was taken back to the ward and was up and walking within about half an hour, I ate and drank in the hope that I could persuade them to let me home the same day. I had been previously told that I would be staying in overnight….. I must have been the youngest person on the entire ward at 27 and with the gentleman whistling Christmas carols I knew I had to get out of there.
I asked if it was safe and was I able to go home for the night and after checking with the consultant was given the all clear. I returned the next day to have the eye patch removed and the smile from the consultant when he removed it allowed me to take a sigh of relief and I was told that it all looked very good and advised to come back in a weeks time.
Since the op
Since the operation I have had 2 follow up appointments with another in a couple of weeks. During my recovery time until now I personally experienced no pain, I would describe the worst feeling during the experience was of my eyes being very tired for the first couple of weeks and a very dry feeling and itchy eye.
Followed by a gunky eye for the first week when first waking up. This has subsided after the first 2-3 weeks and I can barely notice the stitches now. My eyes have been bright white 99 percent of the time with people weeks after asking if I had even had the operation.
The feedback so far is very positive at my follow up appointments and the talk of removing stitches has been mentioned in the next 3-4 months if things continue as they are. I can now see the eye board and read the first line fine, with pinhole diagnostic glasses I can see the 4th line down. Prior to the operation I couldn’t even see them holding up their hand! Amazing!
From my experiences and I understand everyone’s is different I would give the following advice based on mistakes I have made:
- If you are young and a transplant is mentioned as an option, take it before you start to develop a career and build a life. I regretted not getting things sorted sooner as it made it harder for me to adjust my life at the time.
- If you have a bad experience with a hospital or Fitter/Consultant try another. It may mean travelling an extra distance but for me the difference between 2 different consultants and 2 different hospitals was very different.
- I would say if you are waiting for a transplant not to worry, as the waiting and build up for me was a lot worse than the actual operation. I felt a little silly afterwards knowing that I had put myself thought months of worrying. However this is normal!
I am now considering CXL in my good eye at a later date once things have healed and feeling very positive about my future vision.
Good luck to anybody considering or waiting for a corneal transplant. I’m prepared for any hiccup along the way, I am staying positive and doing my best to take care of it at the moment!
You can find Tim and ask him about his Keratoconus journey here