Lady Rabia Abdul Hakim
  • Home
  • Bio
  • Books
    • Author Visits
    • Background Stories
  • Speaking
    • Presenting
    • Other Consulting
    • Appearances & Events
    • News
    • Blog >
      • Contact Us
      • Store
      • Free Stuff for Kids
    • Porfolio
    • Images
  • Unleash Your Legend Radio
  • Cornea Transplant Diary

June 16, 2016 - Moorfields - You Need Transplants!

8/19/2016

0 Comments

 
Once again I was going down to London, but this time it was not for business – I would be seen by Dr Frank Larkin, a well-respected corneal specialist. In fact, 30 years prior, it was Dr Frank Larkin who had conducted John Thatcher’s corneal transplant.

That day my bag held my cane and my array of contact lenses and solutions. I was being seen at the Watford clinic where Dr Larkin visited once a week.

As usual, and attendant called me to check my vision. However, when he asked if these were my distance glasses for driving I responded that I don’t drive and when he asked me if I use them to watch TV, I said I can’t really see the TV with them. And when he asked me to read the letters with my right eye, much to my shock I said, “I can’t see any letters.”

Gathering that I was confused and distraught that I could see no letters, the attendant asked me what was wrong.

“I don't understand. This (my right eye) is my good eye.”

The attendant then stood in front of me and asked if I could see the card he was holding. No. He kept walking towards me until he was about 2 feet in front of me at which time I still only saw what looked like a dark, squiggly shadow on his white medical coat.

The left eye provided a distorted version of the large E at the top of the chart - several blurred Es, warped and stacked haphazardly multiple numerous times on top of each other. 

I waited nervously for Dr Larkin, expecting that we would discuss my contact lenses options in depth.

When I was called into the small section where Dr Larkin sat, I could not even clearly see his face. I would not be able to recognise him if I saw him again. But I will always remember what he said.

After he took about 30 seconds to look into each eye, he pulled the machine away and said bluntly, “Your eyes are both diseased and your corneas are too thin for lenses to even stay on them. That’s why they’re popping out. I recommend that you have a cornea transplant in both eyes.”

I was stunned. What? I thought we were going to talk about contact lenses. 

I started blinking like it would make my brain work better and I desperately wanted to see Dr Larkin’s facial expression. He seemed to realise then that I was a bit stunned and softened his manner slightly.

“Look,” he said. “You’re right eye is now your ‘bad’ eye. It's 1/60 (greater than 20/1000) now. And your left eye is about the same, a little better about 6/60 (20/200). I see from your file that you’ve had difficulty with contact lenses, which doesn't surprise me. So, you can continue trying lenses, but you’ll be right back here next year. Or we can do a transplant which would make wearing contact lenses more tolerable.”

I hadn't known my visual acuity for a long time, but I knew what the numbers meant. Now I had numbers for the world I'd been living in for the last year. 

1/60 (R) - near-blindness    6/60 (L) - severe visual impairment


It was like having an address you'd lost, only to find out that you live in a horrible section of town. You're happy to know where home is, but sad that it's not a nice place.

“Wh – when would it be done?” I stuttered.

Perhaps around the end of August. Okay?

Okay.

​But my mind was whirling. All I could think about was that someone would die and leave me this gift.



0 Comments

June 14, 2016 - Checking my Scleral Fitting...Finally

8/19/2016

0 Comments

 
My optometrist never responded to that email on May 9th.

Well, to be fair, she did respond FIVE WEEKS LATER.

Fortunately, by then, my new GP, Dr. Waller, had helped me get a self-referral to Moorfields.

I was elated.

Still, five weeks later, when my optometrist finally called to say that the manufacturer of my scleral lenses would be in office to check the fitting personally, I agreed to attend. I wanted to hear what he had to say.

When I entered the office the scleral specialist was looking, disturbingly, at the pictures that I had sent five weeks earlier.

“This is extreme,” he said.

​Then he went on to confirm that my scleral lenses had been fitted incorrectly. So, it was with sheer pleasure that I left the office, happy that my persistence had paid off and I would finally be seen by one of the top corneal experts in the country Dr Frank Larkin. 

0 Comments

May 9, 2016 - Scleral Lenses Fail

8/19/2016

1 Comment

 
Picture
I really wanted everything to be okay.

I wanted to be well again. Everyone wanted me to be well. I remember my optometrist when I had left her office just days before, smiling and waving me off, seeming finally satisfied that she had found a solution to this problem that had plagued us both for over a year.

But now days later, as I sat at the kitchen table, I was hopelessly discouraged and my children were confused.

“But you see well with them,” they said.

My experience with my new scleral lenses had deteriorated within the first few days of wearing them. First, I noticed that when I took the tiny plunger and gently plucked them for my eyes, there was a deep, circular indentation. That was after only one hour of wear-time.

I initially thought that my eyes needed to get used to the new lenses. But eventually wearing them became painful and I noticed some discharge - after only four hours of wear-time. That was a clear sign of an impending infection.

The scleral lenses were too tight, sucking unto my eyes and probably cutting off vital oxygen and blood flow. 

I didn’t know what to do because my next appointment was not for another two months.

I decided to contact John Thatcher from the support group, describing the problem along with pictures of my eyes. I was hoping he would give me some advice, or just reassure me that this was normal, because he had worn a scleral lens from many years. Thankfully, he responded immediately, insisting that I stop wearing these lenses and contact my optometrist straightaway. 

I put away my package of hope – the lenses, the plungers and the solutions and dashed off a quick email (including the pictures of my eyes) to my optometrist.

​I didn't receive any response from my optometrist. Not then.

But enough was enough. And that’s when I booked in another appointment for my GP, deciding that come hell or high water, I was going to get a referral to Moorfields Eye Hospital in London.
​

1 Comment

May 5th, 2016 - Arrival of my Scleral Lenses 

8/19/2016

0 Comments

 
My sclerals finally arrived and again there was that feeling of reserved excitement. But surely these would work...right?

The insertion and checking of the fit of my new scleral lenses again seemed short and anti-climactic in comparison to those I’d read about on the internet, but my vision was great. Crisp.

Something did feel a bit “off” but it was hard to explain – besides, I eager to get back to my old life.

​So, smiling, I grasped the package of solutions, lenses and plungers and hurried off reminding myself to build up the wear time hour-by-hour over the next few days.

Finally, all was well...right?


Wrong!
0 Comments

April 16, 2016 - The Support Group, Filming & Snowden Postponed

8/19/2016

0 Comments

 
I was excited to finally meet other people face-to-face that could relate to my problems, having found a Keratoconus support group in the winter.  

Later, I would realise how incredibly important this group would be to my well-being and the health of my eyes.

John Thatcher, the group leader (and a transplant patient and scleral lense wearer) was well organised and I learned a lot about scleral lenses. I was also intrigued by the story of a fellow member who recently had a cornea transplant and another who was about to. Both people, insisted that their previous health care was poor, empathizing that they also had to be very persistent until they were seen by expert eye-care professionals.

Later, I received an appointment to pick up my new sclerals lenses.

FILMING

The students from the University of Wolverhampton had been coming to the house to film the documentary. We  developed quite a bond and they were scheduled to join the children and I climbing Mount Snowden . We were quite excited about summiting Snowden in a few days.

APRIL 21 - BAD WEATHER POSTPONES SNOWDEN

We had spent the last few days getting our gear ready for the climb. The weather was still cold and blustery, but we were hoping it would hold for the climb in two days.

But while the student film crew was at my house filming some final shots, I got a call from Jasmin at Focus Birmingham - The climb had to be postponed because the weather was just too bad. We could not take a chance going up with children and visually impaired people.

The climb is rescheduled for June 18th. 
​
We were all incredibly disappointed as this meant that the film crew would not be able to join us on the climb and it would alter the storyline of the documentary.

0 Comments

March 31, 2016 - Getting Fitted for Scleral Lenses

8/19/2016

0 Comments

 
Picture
Small RGP compared to Scleral Lenses
Picture
Plunger for scleral lenses removal
I was actually quite excited to get fitted for scleral lenses. Scleral lenses are designed to treat a variety of eye conditions, many of which do not respond to other forms of treatment. These large contact lens rests on the sclera (the white of the eye) and creates a tear-filled vault over the cornea. So, I was hoping they would be much more comfortable because they would not rest on my sensitive, damaged corneas.

The fitting consisted of positioning my head over about 90 degrees, using two fingers to hold my upper and lower eye lids back while the optometrist inserted the large lenses. A small plunger was used to pry the lenses from my eyes.

After doing this to test several lenses in each eye along with the  – “this or that, one or two” vision check, I was exhausted and my eyes felt sore, but I left feeling hopeful that the scleral lenses would finally give me my life back.



0 Comments

March 2016 - The GP's Letter

8/19/2016

0 Comments

 
The GP I saw was new. He seemed oddly flustered as he divulged that he was moving to another practice and insisted that my ophthalmologist from Solihull Hospital had to make the referral to Moorfields.

I felt like I was back at square one because I still had not been seen by the consultant ophthalmologist to get the second topography to measure the steepening of my corneas and he had seemed quite uninterested in my plight.

However, the GP did give me a letter stating how my daily life was being impacted - how I had to use the white cane for mobility or get assistance from my children and friends.

That letter felt massively important. It was a written validation of how changed my life had become.



0 Comments

February 2016 - New Lenses Fail, Snowden & a Documentary

8/19/2016

0 Comments

 
Picture
 In February 2015, my optometrist insisted I try new soft lenses under the rigid lenses in my ‘piggy-backing system’. She suggested that these might provide better comfort and allow me longer wear time.

Within two weeks, I developed a small sty on the inner lid of my right eye.

​Result-new soft lenses for piggy-backing fail.

Treatment? Remove all lenses AND KEEP THEM OUT!

But even after removing the lenses, the sty took about six weeks to disappear.

By then, I had accepted my new life.

My kids accompanied me to the grocery store to read the prices, I always took my big black handbag to be able to take my guide cane, my journeys back and forth to London stopped and my business came to a grinding halt. 

The next few months consisted of the usual visits to the optometrist.

For some reason, she suggested we try a single, new soft lenses, which had apparently been able to help in even the most advanced Keratoconus cases. However, she cautioned me to “not get my hopes up”.

I truly wanted to get my hopes up.But alas, it was not to be.

The vision in my right eye was relatively good with the soft lenses, but I saw no letters on the Snellen chart from the left eye. I decided to not use the soft lenses, suggesting I try scleral lenses next. So, the optometrist booked in me for yet another fitting.

Frustrated about the havoc that had become my life, I decided to see my GP to insist on a referral to Moorfields Eye Hospital in London - one of the most prestigious institutions for eye health.

A DECISION TO TAKE ON MOUNT SNOWDEN

I needed something to lift my spirits so I decided to take on a physical challenge after reading about a Birmingham charity, Focus Birmingham, taking blind and partially sighted people to climb Mount Snowdon. The staff at Focus Birmingham were lovely and I felt pleased to help raise money to help the organisation. The children decided they wanted to climb Snowden too and I thought it was fitting for us to take it on together - because this (my sight loss) was a huge challenge that we all had to take on as well.

​The climb is scheduled for April 23rd.

AN ONLINE DOCUMENTARY ABOUT KERATOCONUS

But I wanted to do more to raise awareness about Keratoconus, so I reached out to Tracy McCoy, 
Head of Department of Film, Media & Broadcasting at the University of Wolverhampton where I was a member of the Media Advisory Board with an idea for a short documentary about the condition.

She was excited and two weeks later, I pitched the project to 5 groups of students. The group would film a short web documentary about Keratoconus, my daily trials and join us summitting Snowden to capture the epic moment.

0 Comments

Sept. 2015 - Vision Goes From Bad to Worse

8/18/2016

0 Comments

 

Though I had spectacles, they did not correct my vision, but provided minor assistance for me to “rest” my eyes from the lenses to watch TV and go to the toilet at night etc. I usually sat about 6 feet back from the TV where I could still read the TV menu, though there was still lots of double vision. 

But one night, I noticed that I couldn’t see the menu anymore. It was blurred out, distorted and tripled over. 

I ripped off my spectacles and cleaned them fiercely with my shirt.

Nothing. 

I sat there stunned as I recalled that feeling. It was just like the time in 1998 – more of my vision felt like it had just vanished, just “dropped away”.

I wanted to cry, but instead I stomped upstairs, mumbling that I didn’t feel like watching TV anymore, leaving the kids confused. 

“I can’t see it anyway,” I said over my shoulder. I closed my room door and cried warm tears into my pillow.

The days literally were a blur after that.

A blur of doctor visits to try new kinds of lenses; tests to see if anything else was causing the deterioration; a blur of confused doctors who insisted that “this does not usually happen”; a blur of TV images that I now viewed from 1 foot away; a blur of colleagues that I had to explain to about my visual impairment- why I might not recognise them at times and why I had suddenly stopped attending many functions.

I felt completely alone and isolated because I knew no one could understand what I was going through because they could not understand how I see. 

I thought about calling an organisation that would understand - like the RNIB and was glad when I finally mustered up the courage to call them. 

The RNIB referred me to a counsellor who called me once a week. We discussed everything from the emotional trauma of sight loss to safety. When I told her I felt like I needed a symbol cane (a short white cane used to highlight a visual impairment, but not used as a support aid or to detect obstacles like kerbs or steps) she encouraged me to do so. She explained that this was in everyone’s best interest and for my safety – so drivers and pedestrians alike could be aware, which was only fair. 

Emotionally, she was a God-send. She made me feel incredibly grateful for what vision I had remaining by telling me her story.

During the first few sessions conducted via Skype, “Stacey” seemed normal – by that I mean fully-sighted. But one day, she explained that she knew exactly what I was going through because she had also worn painful contact lenses…before... 

Before…when she had eyes! 

I was stunned silent as she explained that she wore prosthetic eyes now and I instantly felt unjustified for my complaining. 

But of course, Stacey validated my fears and distress. She delicately allowed me to shed my need to be everything to everyone, to be super human and to just BE HUMAN. 

She allowed me to cry, to feel scared of things I heard but could not see, to be angry that I wasn’t getting the treatment I needed, to be frustrated that people could not understand this experience, to be afraid that someone might hurt me if they knew I was visually impaired, but she also assured me that the opposite usually happened and she allowed me to accept that it was okay to not be okay. 

She assured me that I could be vulnerable, but that my cane, nor my visual impairment meant that I was weak. And in many ways, accepting my current situation (cane and all) and dealing with it, would empower me - from dealing with people to being more safe and independent.

I was still incredibly embarrassed when I got my symbol cane, but Stacey was right - the benefits quickly became apparent. 

Once, while grocery shopping, I had my symbol cane out to indicate that I was visually impaired just in case I bumped into anyone accidentally. But when my eldest daughter insisted that I didn’t need it, I put it away. In hindsight, I think she was embarrassed during those early days as well. 

Anyway, when I got to the checkout counter, I thought the cashier was looking at me strangely but of course I could not see her facial expressions. The cashier quickly clarified this for me though, “Can’t you see this is the express lane?” she snapped. 

I looked towards my daughter, annoyed with myself for listening to her because had I had my cane the cashier would have understood my mistake.

“Actually, I can’t see that sign. I’m visually impaired.”

The cashier stuttered an apology and insisted she check me out.

That encounter made me realise that I would have to be my own advocate in this challenge. So, I started doing massive amounts of research. I longingly looked at CCTV’s and magnifiers, but the prices were exorbitant. Eventually, I found out about a government program called Access to Work that provided grants for disabled, self-employed people. These grants could be used for equipment or training to help people remain employed and independent.

I was surprised by how quickly I received a response and with the professionalism of the staff. Within two weeks, an assessor visited me. Initially I had expected to qualify for a magnifier and I was pleasantly surprised when he informed me that there were much more equipment and services that I qualified for. In the end, I was provided with speech to text software, an e-reader, CCTV, a magnifier and other visual aid gadgets.

I also found the local vision support organisation, Warwickshire Vision Support, who provided a rehabilitation officer to visit me. After describing what my vision was like to her, we decided that it was best that I use a guide cane because I needed to be able to find curbs and steps because I have no depth perception. Basically, I see in 2D and my vision loss had a drastic impact on daily life.

When I fell down the stairs, three times, we had to place bright coloured tape at the edge of the stairs. I burnt myself cooking because I could not judge the distance of my hand from the pot. 

Though this was a difficult adjustment for me, it was also difficult for the children. I had always been the personification of a “supermom”, but now our roles had also blurred and they had become my carers. 

My eldest daughter, Alia, typically attended business meetings with me to read train schedules and to highlight people’s behaviour because I could not see their facial expressions. She was a funny sighted-guide though and I often laughed as she stood at the bottom of the stairs screaming at me to stop looking down. 

And somehow, I managed to see the humour in it all. 

I got it. 

I got that she could not possibly understand how scared I was of missing a step. And what was even funnier, was when she herself missed a step. I understood that the last thing any teenager wants is to accompany their parent to boring business meetings and spend chilly winter days, reading train schedules and navigating through busy train stations. But the important thing was that she did it anyway.

I got that they could not understand how noises become terrifying when you cannot see what’s rustling in a bush or how close vehicles are.

I got that they could not conceive how terrified I was when the jacket hanging on my bedroom door looked like a dark, shadowy person there.

Nor could they understand why I screamed in horror when I entered a dimly lit room and Muna, my curly haired girl, looked like the monster from that movie The Village because she had piled her hair on top of her head and my eyes distorted her face.

Nor could they understand the time when I did an Olympic jump from the living room to the kitchen because there was a huge spider on the floor that turned out to only be a leaf.

We laughed at those moments, but they were all genuinely petrifying for me.

And then there were those tender moments, when even my 9-year-old, Sumayah, became my eyes as I walked her to school. Together, we navigated busy roads and traffic, with her gently telling me to “step up…step down” and gently reassuring me that the person approaching didn’t look mean and no, that was not a snake but a doggie in the bushes.
0 Comments

2014 - Aug 2015: TREATMENT IN THE UK 

8/18/2016

0 Comments

 
In the UK, I was initially seen by as senior consultant ophthalmologist in Nottingham. But much to my dismay, he informed me that I DID NOT qualify for cross-linking treatment because my corneas were way too thin.

​I still desperately wanted to know if my vision was worsening because of the constant need I felt to increase the zoom on my laptop. But the doctor insisted that he could not establish if my corneas were steepening at that time without a second topography exam on his machines in a few months.

I was frustrated. Something just felt wrong.

When I moved to Stratford-upon-Avon on in August 2014, I was referred to a senior optometrist and a consultant ophthalmologist at Solihull Hospital. Again, they informed me that they could not establish if my corneas were steepening at that time without consecutive exams on their machines because all the machines varied from doctor to doctor.

I was incredibly frustrated.

In June 2015, I was provided with new rigid (RGP) contact lenses because I was still wearing the ones I had first been administered in Saudi Arabia. My optometrist felt I would get a better fit, to avoid them popping out whenever I blinked. But within weeks of getting the new lenses, I developed an eye infection and went to the emergency at Birmingham Medical Eye Centre. As usual the treatment was to remove my lenses and keep them out until the infection had cleared.

I don't think anyone realises how devastating even a simple eye infection can be for someone who is completely dependent on contact lenses.

Imagine if you were wheelchair-bound and someone told you that you could not use your wheelchair for weeks or months. That is a devastating concept. But I found that eye-care professionals told us patients this as casually as could be, giving little regard for the fact that you are completely disabled without your contact lenses because glasses cannot correct the vision of someone with Keratoconus.

When my infection eventually cleared, I still found wearing the new lenses extremely painful. 

"Pain became my new norm."

I took 1,000 mg of paracetamol each day to tolerant and wear my lenses. Though I told my optometrist about the problems I was having and that I thought the new lenses were too tight, she assured me that they were fine - even though whenever I wore them a red line of angry veins appeared at the 3 o’clock and 9 o'clock areas in my eyes.

 I felt like I was in the most horrible place possible – either I endured pain or I endured blindness. 

The hours I could comfortably wear my lenses became less and less.

And my life was changing.

Quickly.

Having just started my company in the UK, I worried about how I would maintain it.  Daily tasks were planned around my lenses. If I had anything to do, I had to “save up time” – I had to avoid wearing my lenses so I could wear them for the most pressing activities or meetings. 

"I was at the mercy of my eyes, rationing my lenses wear time."

I remember one day in August 2015. During a meeting in London, the only thing I could think about was getting my lenses out of my eyes even though I had only been wearing them for about 1 hour. A friend had driven me down and I inserted them only moments before my meeting.  But once back in the car for the 2-hour drive back home, I scooped them from my eyes.

I was in sheer agony.

My eyes were sore and throbbing like someone had been digging around inside them. On the drive back, I had to keep my eyes squeezed shut against the piercing sunlight. Even behind my dark sunglasses, my eyes watered and painful tears streamed down my face. And one thought kept racing through my mind: what am I going to do? 

Then, things got worse. 
0 Comments
<<Previous
Forward>>

    Author

    I'm an author, speaker, entrepreneur, illustrator, performance poet, master storyteller, and an advocate for women and BME eye health. I'm also severely visually impaired from advanced Keratoconus, a progressive corneal disease.

    Archives

    March 2017
    August 2016

    Categories

    All

    RSS Feed

Powered by Create your own unique website with customizable templates.