Welcome to our Glaucomarize Blog

Here I will be posting articles, advice and information to help Glaucoma sufferers and their families throughout the world, to gain...

Sunday, 18 June 2017

NIKI'S STORY

My story; eyes 👀

Introduction

I believe that whatever curves life throws at us, one must always make the best out of a situation; there is always a positive side! After my experiences with uveitis, glaucoma, operations, sight loss, medicine routines and changing ways of life I can only use all this to make the way forward positive. ☺
This is the reason for Glaucomarize. 😎
I would like it to reach as many people as possible, to help others on a bad day, just the feeling of knowing we aren’t alone can bring a massive change in outlook. I’ve had a lot of friendly support from various glaucoma groups; that alone helped me in knowing I’m not alone. 😉 Every person’s experience is different, mine started with uveitis in my right eye. (Uveitis is inflammation of the uvea — the middle layer of the eye that consists of the iris, cilary body and choroid. There are many potential causes for this condition, many of which are hard to identify.) However, I hope that by sharing my story, it will help to give faith, insight and courage to many.

Uveitis

I was 32 and that was the first time. I had never heard of uveitis. It was painful and I was put on a course of drops which cleared it up. It was in my weaker very short sighted eye. Quite a few more episodes happened over the next few years; I had more drops, pills which worked quickly, always had regular eye tests and pressure tests, but uveitis seemed to be my weak point. I felt it was always related to my immune system, but then not always as I had attacks when I was feeling completely healthy.
Each time it appeared the steroid drops cleared it away. I was so used to being able to clear it up, or have drops to bring down elevated eye pressure, that it was all a shock when I was in my 40’s and suddenly faced with this being more serious. Over time, I had taken a lot of steroids and medicines and this was in my eye that always had such limited vision, (it had always been my ‘bad’ eye since I was 11.) Meanwhile, I didn’t realize that these problems were causing the cells to die in my optic nerve (glaucoma) and they were continuing to slowly die even when taking medicines.😠 Information was limited – hence another reason to create more awareness about this disease.

Glaucoma and the loss of my sight in one eye

In early 2014, I was sitting in the familiar eye checking waiting to be prescribed the usual medicines to help again, when suddenly I heard the word 😨 “operation” – ‘alien’ talk 😩 My words were “but I always have these drops – all goes back to normal then!”
I had been experiencing pain; I had an attack of uveitis. I had the ‘usual’ blurry, cloudy, watery vision. I had been using the regular “pred forte” steroid eye drop for the inflammation. I was also taking “carbonic anhydrase” which suppress fluid production and miotics to help with the drainage. However, one side effect is that they constrict the pupil, which makes it difficult to see. I did realize that things were not improving, but I also thought that there would be some different eye drops or pills to help. I still knew very little about glaucoma – I was only actually familiar with uveitis. My vision had become extremely poor in my right eye. I was experiencing pain and blurred vision and using my ‘good’ left eye much more to see everything. Because of the uveitis, the miotics constricting the pupil and the fact that the cells in my optic nerve were dying so fast, I didn’t realize I was actually fast going blind in my right eye.
This is where glaucoma is not just “black or white”. It cannot be put into a box where all the symptoms make sense. 😡 It was a massive shock to myself and my husband on the day we were told there was little left of the optic nerve in my right eye and that there was actually no way out of this. Looking back I can see that I had experienced many years of problems with this eye, had large amount of various strong eye drops over the years and a build-up of scar tissue had formed. This would have caused serious drainage problems. 😢

My Trabeculectomy

Whilst it was too late to save the sight in my right eye, I was booked in to Cheltenham General for an operation called a trabeculectomy; to sort out the drainage channels and make sure pressure couldn’t build-up in the eye anymore. By the time of the operation (which was scheduled in very quickly), I only had “light perception” left in the eye. Here is when the cells just continue to die once they have started. It’s difficult to describe – black with strange glare. 😎😡 By the time I could no longer see from my right eye – strangely enough I was used to it. Very deceptive. But I could cope. I always do.
When I was introduced to my glaucoma surgeon - Mr.Nitin Anand MBBS, MD (Ophth), FRCSEd, FRCOphth, I knew in my soul I would be fine. Just one of those things where I knew I was being looked after. He immediately instilled faith and conveyed calmness and confidence into me over what would be happening. I looked after myself well before the operation and it was now a way of life only having “light perception” in my bad eye. I had the best, loving support from my husband, my beloved cat and my faith. I had a general anaesthetic and the operation went well. I was looked after extremely well and my surgeon explained everything thoroughly. I still had my ‘good’ left eye and was filled with gratitude that I could still see. The aftercare was also excellent.
I had plenty of recovery time and thankfully the eye looked Ok. I was totally relieved, but glare hurt and still does; hence I wear my dark prescription glasses LOTS 😎 I’m sure many of you know what I’m speaking of! Accidently bumping into people, spilling drinks, not seeing things on the floor etc.😠😉 But I strongly believe if you can start the day with a smile and not complain then you have far more chance of coping with such things. Of course, many aspects of my life had to change. But with faith, patience, time and loving support I have realised I am OK. I just always need to be patient with myself.

Saving my eyesight - my deep sclerectomy

My ‘good’ left eye had always been fine, although it was now doing far more work now. But one year after my trabeculectomy operation, I developed severe blurriness in my good eye. I had been suffering with a bad cold that wouldn’t shift. With this eye being the only sight I had, I became very disorientated and scared. Now this eye was suddenly troubled with uveitis and high pressure. Sometimes a long standing problem can suddenly affect another part of the body; but I knew something was very wrong. I had an emergency appointment to see my surgeon the day I phoned the hospital. As always, Mr.Anand was very calm, but the situation was very urgent as my intraocular pressure was off the scale at 80! When he said this I tried to hold my nerve as good as I could. 😩 He asked me if I had eaten, gave me 2 big pills and I had to wait 20 minutes. In that time I walked to the pharmacy at the hospital to get the long list of medicines.  More than I had ever taken! As 10 minutes had passed I began to feel a little better, the tablets were working and I could feel my eye becoming less blurred, I felt less sickness and pain.
My surgeon Nitin Anand was an angel that day (again 😇). He booked me in to have a deep sclerectomy which is a relatively new procedure and less intrusive than a trabeculectomy. I had to wait a few weeks but I was checked regularly and on a strict eye drop routine. I had a big bag of various drops that I had to put in every hour, the side effects were awful in some. 😢😩😠 But my eye pressure went back down to 21. It was a very scary time, but again with massive support from my husband, my surgeon, my beloved cat and my faith, I got through it.
The deep sclerectomy went well. Mr.Anand performed it with great skill and expertise. My vision took 6 weeks to come back properly, so I had a very blurry and challenging time. But the sight in my good eye had been saved. It really felt like a true miracle! My cat was a huge comfort; she always knew when something was wrong and she cuddled up with me after I got home. I must say my faith strengthened even more in those 6 weeks. If you love animals they can help enormously with relaxing and healing therapy.

Gratitude and Faith

I still use steroid drops occasionally and another drop which is a lifesaver called “hylo tears” – recommend by my surgeon. I’m so very fortunate to be able to see each day. After those few hours that March day in 2015 when my pressure was off the scale and I was possibly hours from total blindness, I have learnt to never take anything for granted. To smile even if you don’t feel like smiling. To be thankful for all I have each and every day. 🌈 To look after myself better and be thankful for who I am. I wake up each morning with gratitude that I can see the beautiful world🌛🌹 and those I love. The realisation of health being the most important thing is now so true to me. There is no time to use wasted energy on negative things or worry. Things can turn out good with faith, trust and a smile.
I am truly blessed as my husband is now ‘My head of security’ wherever I go. We have been fortunate enough to spend a lot of time now by the coast. The fresh sea air is so much better for my eyes. Less irritations compared to the pollution inland.
I am sure many who read this can relate to my situation in some way 😎😨😢 and although I realize everyone’s experience is different and individual, I really hope my story and this blog and website helps other glaucoma sufferers.
May God Bless you all and always remember to keep faith over all of the difficult eye situations and frustrating eye days. 👀👀👀👀❤😎

Never give up!

Niki De Lara – June 2017 💗

 

1 comment:

  1. Your Nephew Geoff here Auntie Niki.
    Your story is truly inspirational, and your positive outlook despite all the hardship is to be admired.
    You're one of the bravest people I know and it's so wonderful you can turn such negativity into positivity and strength for others.
    Keep up the great work. I feel truly Glaucomarized!
    Much love x

    ReplyDelete