 | Focus Birmingham, the sight loss charity that I have been fundraising for, has been chosen as the charity of the night for the Midlands Asian-British Business Chamber of Commerce awards. Even more exciting, Focus Birmingham has asked ME to do a short speech on their behalf. I'm elated! A night of glitz and glam, surrounded by distinguished business professionals is definitely what I need right now. And I do so love speaking, especially to help a charity that I adore. My speech goes amazingly well and I'm exceptionally well received by the attendees, who are so incredibly generous. We actually raised £10,000 tonight! And the after party was a well deserved celebration. Definitely the highlight of my year! |
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 I visit Dr Larkin at the Moorfields Watford clinic.
My vision has not changed since the last visit in October. Fortunately, Dr Larkin has more of a human touch and actually turns directly towards me after he's finished making notes and asks how I'm managing, considering that the vision in my left eye is still horrible. I think he sensed that I was very discouraged as I explained about the scleral lenses being so tight, leaving an indentation and my not knowing what to do. "You're done with contact lenses," Dr Larkin says, "We will just try to get you the best possible vision with glasses for the right eye for now and then proceed with the transplant on the left eye in a few weeks." I'm very encouraged by this because I would rather do the left eye soon so that all the time recovering and healing is not so very drawn out. Still, I know that Dr Larkin will do what he thinks is best, when he thinks it's best. After all he's the expert.  Indentation from Scleral lens after 3hr wear-time The scleral lens they fitted for my left eye is too tight!!
After wearing it for only three hours it is suctioned onto my eye, leaving a deep indentation and blanching which would eventually cut off blood supply. I try on numerous occasions to call the contact lenses department at Moorfields to ask what I should do, without success. Emails to the email address provided (with pictures of my eye after a three-hour wear-time) also go unanswered. Not wanting to damage my left eye any further, I forego wearing them until I speak to Dr Larkin at my next appointment. Back at Moorfields again.
They go through all the usual eye checks. My vision is about the same - 6\60 R, 2/60 L and the graft is clear and healthy. Next I go to the contact lenses clinic to collect my scleral lens for the left eye. Once again, they show me how to take it in and out with the little plungers that are provided. Lastly, they give me an email and phone number to call if I have any problems with the lense. My eye steroid drops are scheduled for three times a day now and I am booked to see Dr Larkin at the Watford clinic my next appointment.  Left eye stained for scleral lenses fitting, right grafted/transplanted eye Back in London at Moorefields and I'm happily surprised that my vision in my right/grafted eye is so much better. The lid is only slightly swollen, but there is almost no redness. Mr. Neil is being my sighted guide, but even so I feel much more confident of stairs, curbs etc.
Some side effects of recovering some of my vision is dizziness and nausea as my brain tries to adjust to the new vision. The clinic is crazy - full of people and I feel a bit claustrophobic. The nurse takes me to a back room and asks if I think we should do a topography scan now...huh? Why is she asking me? We look at each other oddly for a few moments. She fiddles with her hair...adjusts her bun and then decides...yes, we'll do the scan now. We do the scan, check my vision and eye pressure. Afterwards, I'm seen by the junior doctor, who's not very friendly - just business-like: Yep, eye looks good. Vision is a little worse than 6/60 (20/200) in grafted eye, but no signs of rejectio. Okay, wait here for Dr. Larkin (aka the expert/consultant). Dr. Larkin checks my eye, declares a great job, says I'm to move my Deximethasone steriod drops to every 2 hrs for the next 2 weeks, then very 4 hours until my next appointment. I can stop the antibiotoc drops now. But he emphasizes the importance of doing my steroid drops. Those instructions are printed off for me and will be mailed to my GP, also. And with that he sends me off to have the scleral contact lenses fitting for my left eye. Later, 1.5 hrs later actually, my left eye is stained and prodded with different huge scleral lenses. The vision is not that great with the lenses (6/30, 20/100) but Dr. Pullum declares that is the best he can get it - my cornea is so steep. The lense should be ready in about 6 weeks, so, I'll get them at my next appointment. I'm exhausted when I arrive home at 6pm, but don't feel like I can complain. This is where my life is at now as I try to recover my vision. I've committed to the ongoing drives to hospital and a lifetime of emergency checks for rejection. They warned me the road would require massive patience and commitment. And that the road would be long. Don't forget, I still have the left eye to graft/transplant and the 18 months for that to heal. But all that still seems better than the alternative.  The swelling is going down, but every time I blink can feel something pricking me. I wonder if one of the stitches have broken. By afternoon, the pain, irritation and redness in my eye has increased and I'm worried about rejection. So at 6 PM I call Moorfields and explain what's happening. The doctor tells me to increase the steroid drops to every hour, but keep the antibiotic drops to every two hours.
It works and the irritation, pain and redness have gone by the next day. The kids get a kick out of taking pictures of the eye being they can see the sutures so clearly. The vision in the grafted eye is still very bad and I'm having dizzy spells when I try to walk with it open. Though the redness has gone, it's still super sensitive to the glare and it waters a lot. My next appointment is Sept. 19th. They will check my grafted eye and try to fit the left (which is 2/60 (20/1000) now) for a scleral lens so i can use that to function better.  7:00AM:
I awake determined to check my medication instructions myself because I don't think Mr Neil has given the instructions correctly. Having to put the paper 1 inch from my left eye, which is still severely impaired, also hurts my right eye. But I know it's imperative to get my medication dosage correctly. The danger with overusing the steroid drops is that it can increase eye pressure and lead to complications like glaucoma. I'm right. I'm to use the drops every two hours, during the day only. The irony of this entire episode is that all the fully sighted people got the instructions wrong. 3:00PM I still feel tired. I don't know if it's from the sedative or just the trauma of surgery, but while I was napping in the afternoon in the afternoon Mr Neil came by to read to me. He seemed to think that I should be feeling amazing, but I don't. In fact, the last thing I'm in the mood for is The Old Man & the Sea. I just want to sleep...eye shield and all.
11:30AM: I'm instructed to arrive at Sedgwick Ward (female only ward) by 12 PM. But Mr Neil, who is way more nervous than I am, insist that we leave at 11:30 AM. The short track across the road to the hospital is relatively easy, especially once you're on the hospital block because there is a huge green line on the sidewalk that leads directly into the hospital. At Sedgwick Ward I check in with the receptionist and I'm seated along with a few other women and their spouses. The surgery list does not begin until 1:30PM so I don't really know the precise time that I will go into theatre. However, at 11:35 I'm called through to the ward. Mr Neil is instructed to wait in the seating area until called. Inside the main part of the ward there are many beds. Next to each bed is one chair. Because there is limited space of the ward each patient is only allowed to bring one friend or relative and they are instructed to use the chair and avoid sitting on the patient's bed. Apparently, there are also signs everywhere instructing people NOT to sit on the patient's beds. I can't see those, of course. Some women have already had their surgery and are resting quietly. The head nurse, who seems Jamaican by her accent, is very intimidating as she shows me the locker to put my stuff and instructs me to disrobe, put on the hospital gown, compression-wear stockings and disposable shoe coverings.
After I finish dressing, the head nurse and male nurse check my vitals, confirms that it's my right eye being grafted/transplanted and inform me that the anesthesiologist is coming to speak to me about the medication he is preparing to prevent any post-operative nausea and vomiting (PONV), which I'd had in the past. The danger is that any vomiting would increase the intracranial pressure and negatively impact my new graft. The anesthesiologist arrives soon after and assures me that he has prepared a special concoction to prevent any nausea and vomiting that might follow the surgery. After that, I'm instructed to lay down and relax, but the glare from the numerous windows around the room is hurting my light-sensitive eyes. Once all the female patients have changed clothes, male friends and visitors are allowed to enter. They are all given the same disposable shoe coverings. Mr Neil comes in and being an oddly intelligent but clumsy former medical professional, promptly SITS ON MY BED much to the horror of the head nurse, who flies over fuming, "Sir, yah nuh see the sign? Don't sit on the patient's bed! That seat there is fa you!" Mr. Neil mumbles "Sorry" and swiftly moves to the his seat. SOOOOOO embarrassing. 1:30PM Right on schedule, they start to call patients into the theatre. I am hopeful that since my last name begins with a that I will be one of the 1st to go into surgery. No such luck. One hour later I'm still waiting and starting to get hungry. 2:45PM Some of the first patients for the afternoon surgery start to be brought back in to recover. With a bandaged eye, most seem quite talkative and in very little pain. Not every patient is having the same procedure as I am, but I'm still encouraged that within a short while they are up, dressed and headed home. I am getting very thirsty.  3PM: Suddenly, the fire alarm goes off! Are you kidding me? I'm so worried that anything will derail my procedure from being done today after having come this far. But after a few anxious minutes, the head nurse tells us to ignore the alarm. Whew! Then, in the midst of all that noise a junior doctor comes over to do some final checks before my surgery. He takes me to another part of the ward, but I can barely hear him as he examines my eyes, again confirms that it is the right eye that is being transplant/grafted, explains the risks involved the surgery and has me sign an agreement to the procedure. Next, he marks a green arrow over my right eye. Then, he asks if I would be willing to take part in some research for Keratoconus which would involve me giving blood. Agreeing, I sign another paper and go back to my bed to wait...some more.  4:00PM Oh no-not again! The bumbling, but hilarious Mr Neil has again flustered the head nurse! This time he removed his disposable shoe coverings. Whatever was he thinking? Once again, she came flying over admonishing him to cover his shoes immediately! Even though I am exhausted, I couldn't help but laugh.  4:30PM; The kids called to see how things were going and are surprised that I haven't had the surgery is yet.Just then I hear my name being called-FINALLY! THIS IS IT! The head nurse asks me to confirm my date of birth and that it is my right eye that is being grafted. The male nurse then leads me into a small room next to the operating theatre. I can see the MIRACLE WORKERS (doctors) dressed and waiting in the operating theatre. But in this first room, I'm greeted by a female assistant and the anesthesiologist, whom I'd met earlier. They cover my hair and start tapping for veins. The anesthesiologist explains that he is going to take some blood now for the research I agreed to. They start squeezing and squeezing my arm, but for some odd reason cannot get any blood. "No worries", he says, he'll just get it while I'm on the operating table. Next, he starts giving me the sedative and assures me that I feel fine. But suddenly I don't feel fine - my chest feels very tight. I start to panic and tell him I'm not fine, but he just smiles at me and then I'm enveloped by darkness.  7:00PM ish... I can hear my name being called, but it seems to be coming from somewhere far away. As I slowly I open my left eye I become fully aware of the horrible pain in my right eye. A nurse continues to tap my hand and call my name, "Rabia, you need to make up now." I manage a groan. I'm still groggy from the sedation and only mildly aware that I'm being wheeled back to the main ward. Once there, the head nurse brings a sandwich and tea. She insists I try to eat. I tell her I'm in so much pain and she agrees to get me some medication. I'm confused-how were all the other women able to recover so quickly? I thought they said that this wasn't going to hurt. I feel shattered. The pain feels like it has engulfed my entire body and I'm thinking that there is no way I can walk across the streett to my hotel without collapsing. They give me some codeine for the pain and I wonder how long it'll take to kick in. Mr Neil insist I eat at least half a sandwich which I barely managed to do. Squinting, I see the head nurse talking to Mr Neil. Then, she tells me that she is not confident that I will be able to get to my hotel safely, so she's admitting me to the ward upstairs for the night I want to hug her! I'm so grateful, but I only managed to whisper a "thank you." 8:00PM They wheel me upstairs and get me into bed. The duty nurse introduces herself, but I cant remember her name She says she can see I'm in a lot of pain. Desperate like a junkie, I ask for more medicine and she leaves to get my chart to see what she can do. When she returns, she says that she cant give me any more medicine but she will check on me during the night and I should try to get some sleep. I don't know how I will be able to sleep because with so much pain. The codeine doesn't seem to have helped at all. Mr Neil stays for a little bit, sitting in another chair, not on my bed - lol. At some point he leaves and I drift off to sleep, on my left side. During the night, I'm mildly aware of the door opening and closing as the duty nurse checks on me. Even with my eyes closed the soft light feels like torture. Still, I'm glad I did it. I lay there thinking that there's still a long road ahead, but I'm overwhelmed with gratitude for all the people helping me recover my vision. I think about the donor, their family, the head nurse, Mr. Neil, the team of doctors (especiallly Dr. Larkin), my kids, my family...the faces of all these people who have had such a massive impact on helping me through this flash through my mind as I drift in and out of sleep.
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AuthorI'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. ArchivesCategories |
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