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Aug. 30, 2016 - Transplant Postponed 6 Days Pre-Op

8/31/2016

My neck strain has kept me in bed for days now. Sitting up causes excruciating pain and the children are insisting I go to the GP to check that it is not something more serious. I insist that I just need to rest - that the strain is caused from the tension and stress I was under recently.

Then, around 10am I get a disappointing call from Moorfields - my surgery has to be postponed by one week - to Monday Sept 12th. I am massively disappointed after having prepared myself. Still, I tell myself that it's for the best. After all, it would give me more time to recover from the neck strain. And another thing, now I will get to see the kids off on their first day back to school. That had bothered me - that I would miss that because I had never missed a first day back to school ever except when they were held in Jordan.

I immediately message the kids and my sister about the change in date - everyone has to re-organise themselves a bit, but they all assure me that it will be okay.

As I lay in bed, I can hear the twins (15 yrs) cleaning away downstairs to get the house ready for our guests - my mother and my sister are due to arrive in 2 days - Sept 1st.

I feel extremely grateful, and quite emotional, that they are coming.

Why is that?

Why is it that when we feel most vulnerable we want our Mom?

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Aug. 24, 2016 - Strained Neck 13 Days Pre-Op

8/31/2016

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I did not heed my own advice, and like a fool, exercised again yesterday. As a result, this morning I awoke with severe pains down my neck and upper back. I am in so much pain I am confined to bed all day with the children waiting on me and scolding me to relax until the surgery is over.

But I am scolding myself as well because this latest injury will no doubt result in my having to cancel my last event before the surgery which I had been eagerly looking forward to - a workshop with the BBC on the 26th. What's worse, my youngest daughter is turning 10 today and we are due to have a small gathering in the evening.

I take painkillers and manage to grin through the birthday dinner and the sheering pain in my back for 3 hours, after which time I give up my bravado and announce that I must go to bed.

Later, as I drift off to sleep, grimacing with each twitch of my body, I vow to rest all these next few days, cancelling what I must to rest and regain my health.

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August 15, 2016 – Pre-Op Assessment 22 Days Pre-Op

8/21/2016

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Okay, so it’s pre-op day. And I feel horrible – cold and weak.

Coffee doesn’t help. I start getting dressed, but I have to lay down. A bowl of warm soup makes me feel a little better, but ultimately it’s two paracetamol tablets that makes me feel great.

Make-up, a cute outfit and 2 hours later, I'm off.

The drive down to London feels extra-long today, even though there’s no traffic. I arrive five minutes early.

The hospital is remarkably easy to navigate. On the sidewalk leading into the hospital there is a huge green line that a person with a visual impairment, but with some functional vision, can follow.

I’m directed to a small waiting room and at exactly 1:45 PM, my scheduled appointment, my name is called.

Wow! I’m already impressed by the prompt service.

Nurse #1: takes my blood pressure, oxygen levels and pricks my finger, testing me for diabetes. She also measures my height and takes my weight. All good.

Nurse #2: Test my visual acuity: CF - right eye (counting finger) 2/60 left eye (20/800) That's NOT GOOD.

I’m a bit stunned by how much my vision has deteriorated yet again in both eyes in the last 2 months. But there’s no time to quibble about it. I’m up again.

Nurse #3: again tells me my visual acuity and explains that it has deteriorated since June. I let her know that I understand. She confirms that it is the RIGHT EYE they will perform this current transplant on. Yes, I know. Next, comes numerous questions about my medical history. She especially notes that I have a history of post-operative nausea and vomiting (PONV). This is a common side effect after anesthesia, however in this procedure it's more of a concern because PONV can increase eye pressure and significantly impact my transplant. After that, she goes over the instructions for fasting prior to surgery, make sure I remove nail polish and checks that I know what ward I have to go to. Lastly, she provides me with the instruction pamphlet for the surgery.

But wait... "Is that your real hair?", Nurse #3 asks.

Huh?

"Yes, this is," I say running my nails through the layered top half of my hair. "I clip-in longer extensions on the bottom."

She smiles, feeling my hair, "Oh, it's lovely. Are the clip-ins Brazilian?"

I'm smiling now too, amused by our rapport. "No, Remy, I think."

Nurse #3: "Oh it's lovely! Where are you from anyway?"

Me: "I'm from the Caribbean - the Cayman Islands, actually."

Nurse #3 beams: "Really? I would never have thought you were from the Caribbean."

Maybe she is from the Caribbean too, but there's no time to ask. I'm shuttled off again.

Nurse #4: applies electrodes to my chest (and one to my foot?) to check for heart irregularities - the basic ECG. I feel awkward lying there topless even though it’s a female nurse. I’m stiff and she keeps telling me to relax my arms. So, I’m relieved when two minutes later she tells me to get dressed.

Back to the waiting room.

Two minutes later, I’m told that I’m free to go. Yay!

I guess I passed.

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August 11, 2016 - AVOID BAD IDEAS 24 DAYS PRE-OP

8/21/2016

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I felt good for the first time in days, so I decide to work out.

BAD IDEA!

1,000 skips, numerous lunges and a great strength training session later…and now I feel like crap!

I'm shivering under the duvet.

The kids yell at me, “OMG! Why don’t you relax!”

Note to self: DO NOT WORK OUT UNTIL YOU'RE SURE YOU’RE WELL!

I’m drinking my fruit smoothies as instructed, but now ALL the kids want smoothies, too. So, I spend precious resting time arguing, explaining why they can’t use out all MY fruit.

HELLO! I’M THE ONE WHO’S SICK AND WHO NEEDS TO GET BETTER IN 4 DAYS! AND I’M THE ONE CAN'T BE STRESSED OUT!!

Kids: OKAYYYYYYYYYY. But can we have a shake too?

Me: Arrghhhh! (Pulls hair. Stomps up stairs. Slams door)

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August 10, 2016 - Still Sick 25 DAYS PRE-OP

8/21/2016

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Got out of bed for my coffee around 6 AM.

Still having a horrible headache over my left eye, so I decide not to run today.

Tried to read on my iPhone for a bit, but even reading with my glasses now is incredibly difficult. I have to hold the phone about 1 inch from my eye and even then it's blurry, so my eyes get tired really quickly. I don’t know if this is a new development or just because I’m sick.

Though it’s overcast today, the meagre light coming through the kitchen windows feels blinding. I have to shade my eyes of my hands as I read emails.

I give up around 8:15am and decide to go back to bed – something I never do, but even the soft, grey glare from the kitchen windows is too much today.

In my room, I close the blinds, the drapes and pull the covers up over my head. The darkness feels comforting and within five minutes I'm shocked to realise that my headache is subsiding. I thought this was a sinus headache from the flu, or whatever bug I have, but perhaps it is photophobia – sensitivity to light. I've always had it, but today it's worse than ever.

Later, I take a shower and watch a bit of blurry TV, but when the headache returns, I quickly retreat to my darkened den of a room.

It’s official – I’m a vampire.

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August 9, 2016 - I'm Sick 27 DAYS PRE-OP

8/21/2016

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Today, I feel even more unwell. Headache and fatigue. But I have things to get done.

Kelly, the mobility officer, is coming by to bring my darker UV sunglasses – those huge, Matrix-looking ones that most people associate with the elderly, but I love them because they completely block the glare even at the sides.

Kelly and I also discuss the new technique that I need to learn for my long cane.

It’s about 2 inches longer than my guide cane, but the handle is cushioned and much more comfortable. I find that I’m still stumbling because the guide cane only gives me about 1 step warning about the terrain in front of me. The long cane should provide better awareness than that.

We walk across to Stratford Parkway station, which is relatively flat, so she can train me with the new long cane.

I'm sure I'm not going to need it for very long, but during the next 12 to 18 months my vision will vary and I still need to be mobile and safe - especially considering that I will still be visually impaired in my left eye with only 6/60 (20/200) corrected vision.

I can easily ignore the passengers coming and going because they are only transparent blobs of colour to me.

Though I'm exhausted after the hour-long training session, I can’t rest yet. Still need to get the blood work done. After a quick sandwich, I rush to catch the train with my new long cane in hand and walk over to Stratford hospital. The blood work takes about 20 minutes, after which I get the next train back home. It’s 12:30pm and I'm sick and exhausted, but my day is STILL not over. The dentist insists that Muna have an adult with her for her 2pm appointment.

I take a nap for about an hour, jump the next train into town and walk Muna to the hospital. Again.

Dental appointment goes well. I think. I can’t be sure.

After all, I watch a cleaning, filling and x-rays through a blur of light and colour. The dental office is remarkably bright and the air conditioning, remarkably loud.

I can’t wait to leave.

Finally, we leave. Train.

One of the kids helps me into bed. I’m not sure if I’m fainting or falling asleep. But as unconsciousness washes over me, I think, what a saga…trains, pains and all these ordeals.

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August 8, 2016 - Am I Getting Sick? 28 DAYS PRE-OP

8/21/2016

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Oh no! I feel chilly and weak. But I can’t get sick – not now. My pre-op assessment is exactly 1 week away – August 15th.

I decide it’s better to be on the safe side, so I make an appointment with the GP for the afternoon. She confirms that I have a slight fever and order blood tests.

The plan to get me well before my pre-op check next week? A huge dose of nature’s goodness – fruit and veggies smoothies high in vitamin C. No antibiotics. A low grade fever is just my body trying to fight something off – better to let do that naturally, she tells me.

Oh - lots of handwashing. And rest!

I pick up a big blender on the way home. Everybody say “fruit smoothies” – I’m prepared to work this plan.

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August 6, 2016 - An Emotional Day 32 DAYS PRE-OP

8/21/2016

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I went running this morning. I want to enjoy the last meagre days of summer before I have to take a break. I'm still feeling a bit irritable today and the run doesn’t help.

As my vision deteriorates, I’ve become more sensitive to sound like the clanking of spoons on bowls, chewing, the drumming of fingers on a table – almost anything feels agonising.

It's Saturday so we have to do the grocery shopping, but I don't really feel up to it. On the other hand, if I stay in the house I think I will get even more discouraged. So, I decide to go.

As I'm getting dressed, the gardeners come to do the lawn. Oh no! The roar of the lawnmower feels maddening. I try to ignore it, but I can't seem to. I actually have to clasp my hands over my ears and close my eyes, but it doesn't help. It's also breezy outside and a door slams somewhere in the house, causing me to flinch.

Then, another door slams. I wince - it's almost painful.

What happens next is unavoidable because the sounds are too difficult for my mind to tolerate - they crash upon me, one after the other like huge waves pounding the shore and my body reacts. It breaks. Releasing its own waves of hot tears.

Somehow I manage to apply some make-up between sniffs and the dapping of tears - I’ve been practicing applying my makeup with one eye, but the tears make it more challenging.

As I enter Tesco, one of the employees notices my cane and says, "Struggling today?"

I can't recognise him, but I know he's wearing the blue uniform, so I turn towards the voice, smiling weakly, "Yes, I'm struggling today."

Even then my voice is trembling.

I want to cry. I try to shop instead. But I can't seem do it. It's too busy and much too noisy with Saturday shoppers. And a child’s screaming.

In fact, she seems to follow me wherever I go and I finally tell the kids that I have to sit down - they'll have to complete the shopping. Muna directs me to the blue chairs at the end of the checkout counter where I sit next to an elderly lady. I can tell because the face is framed by what I think is white hair.

I sit there clutching my cane between my knees and watching the blur of colours that are people. Wine bottles clank, the checkout machine beeps and beeps, idle chatter, the child's wails – they all seem to gather into one huge, tortuous wave and I can’t control the tears. They flood down my cheeks and settle behind my blue, aviator-style sunglasses.

I desperately need to go home.

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July 2016 - Difficulties & Pre-Op Assessment Date

8/21/2016

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My vision feels like it has “dropped” (deteriorated) again. It’s hard to explain when my vision is so bad in the first place, but I can tell by the fact that even colours are disappearing closer and closer.

I’m also finding it harder to remind myself that the horrible images I see are not real, but the distortions and misperceptions my awful vision creates is becoming harder to ignore – blurred people with misshapen heads and 3 sets of eyes – that’s what I see if I’m close to them. From a few feet away, the eyes are merely black orbs and when they open their mouth to talk there’s a third dark orb. A bit farther away and there’s no face at all – just a talking transparent figure with bits of colour from their skin and clothes.

I also started having horrible nightmares because at night my brain is replaying the images it captures during the daytime. A few months back, we laughed at this, but now these scares are on-going.

At night, anyone entering my room is a huge, menacing shadow silhouetted against the hallway light and I scream, “Who is that?!”

Now, my children are instructed to stay by the door and announce which of them it is because I’m so shaken by any dark presence.

Dark circles are always under my eyes and I can still see them under the concealer.

Sounds feel exaggerated. Some days, I can’t even tolerate the sound of my earphones as I run.

I’m cautious to put hope in the upcoming surgery, but I do nonetheless, telling myself that soon…soon this will be over.

It will get better.

But in the meantime, no one, aside from the children, can see me imploding.

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June 20, 2016 - Corneal Transplant Date Set

8/21/2016

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On June 18, I successfully climbed Mount Snowden, the tallest mountain in Wales.

My 15-year-old son was my guide and my 9-year-old also joined us. It was the most physically grueling thing I have ever done, but I was happy to do something for other blind and visually impaired people.

Snowden also represented something else to me - the huge challenge I had coming up - my transplants and just two days after I completed Snowden I got the date of that first challenge.

On June 20, I received a letter from Dr. Larkin providing the date of my first corneal transplant. It was scheduled for September 5th.

I spent the next several months organising my life and preparing the children. My surgery was scheduled on the first day back to school. My mom and one of my sisters planned to fly in from the Cayman Islands to help me during those first weeks. Like most people undergoing this procedure, I have scoured the internet for information on what to expect and I’m surprised to learn about the various limitations involved.

I must avoid lifting, bending, pushing, sneezing, coughing – things that increase intraocular pressure. I’d have to avoid washing my hair for the first few days to avoid getting water in the operated eye. Yuck! I’d have to sleep on my back or my left side. No worries there. I’ll have to wear an eye shield to sleep at night to avoid rubbing bumping the eye accidentally. I can expect extreme sensitivity to light. I won’t be able to run, or do any form of hard exercise, until cleared by the good doctor. I was sure they’d give me more instructions at the pre-op assessment, although I still wasn't informed when that would be.

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<<Previous

Aug. 30, 2016 - Transplant Postponed 6 Days Pre-Op

Aug. 24, 2016 - Strained Neck 13 Days Pre-Op

August 15, 2016 – Pre-Op Assessment 22 Days Pre-Op

August 11, 2016 - AVOID BAD IDEAS 24 DAYS PRE-OP

August 10, 2016 - Still Sick 25 DAYS PRE-OP

August 9, 2016 - I'm Sick 27 DAYS PRE-OP

August 8, 2016 - Am I Getting Sick? 28 DAYS PRE-OP

August 6, 2016 - An Emotional Day 32 DAYS PRE-OP

July 2016 - Difficulties & Pre-Op Assessment Date

June 20, 2016 - Corneal Transplant Date Set

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