Life As I Now Know It...
I debated for a while about whether or not I wanted to publicly discuss my recent illness. I ultimately decided to in efforts to help patients like myself and build awareness on this terrifying disease that is rarely ever heard of. Brace yourself, this is the abridged version...
June 27, 2014, I woke up noticing a small, oval-shaped figurine in my right eye. I didn't think much of it - summer had just started and maybe I was seeing sunspots from the brightness outside. I traveled that weekend; the spot didn't seem to go away. "Strange," I thought to myself, "I'll deal with it Monday when I get back to the office." [For those of you who don't know, I work in Ophthalmology]
June 30, 2014. The spot increased. I casually told one of the ophthalmologists at work who had me do a "visual field test". This test detects dysfunction in one's central and peripheral vision. This test is also a nightmare if you have A.D.D. The results showed that I suffered some mild field loss nasally in my right eye. Weird, but nothing severe. We would re-evaluate in a couple of days.
July 3, 2014. It was 4pm. The office was winding down for the long weekend. I remember feeling uneasy that day. I felt fatigued and my arms were tingling. Something felt off balance and I was having trouble seeing my phone and computer. Our cornea fellow had me do another visual field test. Test results for my left eye were perfect, right eye had significantly worsened. Vision was 20/20 in both eyes. We dilated my pupils, checked my retinas, optic nerves, corneas, eye pressure - everything was structurally perfect. Now we have a problem. One of the other MDs immediately got involved as she frantically made calls to her colleagues at the local hospitals asking for opinions. I needed an MRI. I remember her telling me not to Google anything when I went home... to this day, I still haven't Googled anything.
July 4, 2014. I arrived at the Massachusetts Eye & Ear Infirmary [MEEI] with hopes of being in and out for the MRI. I brought my weekend bag as I was going to a 4th of July barbecue following the "appointment." I ended up spending 8 hours at MEEI, having seen 3 specialists (Cornea, Retina, Neuro-Ophthalmology) before I was transferred next door to Massachusetts General Hospital [MGH] for an MRI. I remember coming out of the MRI, all loopy from Ativan, having now been at the hospital for 14 hours when I was told I was being admitted into Neurology for inflammation on the right side of my brain.
July 5 - July 7, 2014. Hospitalization #1. Diagnosis: Optic Neuritis OD. Treatment: 3 doses of 1,000mg of steroids IV. Expectations upon discharge: 2-3 weeks before vision returns back to where it started. I had fallen pretty sick from all of medications that were pumped into me but was happy to be on my way to a full recovery. We continued to do visual field tests in my office twice a week to keep an eye on things. Things were getting better.
August 4, 2014. I went to MEEI for a follow-up appointment with Neuro-Ophthalmology. To my surprise, I learned that the vision in my right eye had regressed to 20/60. The doctor explained that the recovery isn't always perfectly sketched out for some Optic Neuritis patients. While the regression was shocking, he told me not to worry. We would follow up with each other in 2 months when things should almost certainly be back to normal.
August 5, 2014. I woke up extremely dizzy and nauseous. We repeated the visual field test with the right eye looking significantly affected again. We checked my vision. I will never forget this day - I was officially legally blind being 20/200 in my right eye.
August 6, 2014. I wore an eye patch to work because I couldn't function with the difference in depth perception. I remember walking into a wall, dropping things, tripped over a box. I knew something wasn't right, fear was making me nauseous. My vision had regressed even further to 20/400 in my right eye. My visual field tests depicted defect in both eyes. I called my neurologist who ordered me to come back to the hospital asap.
August 7 - August 12, 2014. Hospitalization #2. Diagnosis: Sero-Negative Neuromyelatis Optica [NMO] OU. Vision: 20/600 right eye, 20/120 left eye. Symptoms: Vision loss, difficulty walking, sensory loss and numbness in limbs. Procedures: Lumbar puncture, 3 MRIs. Treatments: 5 doses of 1,000mg of steroids IV and Rituximab infusions [an aggressive treatment used to treat patients with cancer, rheumatoid arthritis, autoimmune disease, etc.]
Since my discharge, I've been laying low, attempting to recover in the most positive fashion possible. But I'd be lying if I told you things have been easy. Every day brings along new physical challenges. I now take 10 pills a day having formerly been one of those holistic weirdos who never even took Tylenol. Despite everything though, I feel really lucky. As I reflect, I ask myself questions like, "what if I didn't work in Ophthalmology?" and "what if I didn't live in Boston?." I legitimately have a dream team of doctors from the 2nd best institution in the country working with me on a daily basis to ensure that I am on the right track. Most importantly, this entire situation further proved how much love and support I have around me. My family and friends are my rock. They have kept me afloat during the scary times I felt I was sinking. I have received gifts and encouraging words from literally all over the world! I've never felt more loved, special, and cared for in my life. With an unknown road to recovery ahead of me, I'm eagerly looking forward to spreading NMO awareness, raising money for research and development, and to stay in remission once I am fully healed. Life and the quality of it truly are very fickle. Please remember to make every day count and laugh until your stomach hurts. Love you all and thank you for continuing to support me. xx ciao!
Special Thank Yous:
Samir Melki, MD PhD
Maheen Haque, MD
Macie Finkelstein, MD
Kameran Lashkari, MD PhD
John Lee, MD MPH
Dean Cestari, MD - Neuro-Ophthalmology MEEI
Neuro-Opthalmology Staff at MEEI
Tracey Cho, MD - Neurology MGH
Jennifer Canesi, NP
Jennifer Canesi, NP
Ying Fan, NP
Adonis, Laurie and Jen at Lunder 8 MGH
Nicolas Busaba, MD - MEEI
Craig @ Radiology - MGH
My brave mother, sisters who I would be absolutely lost without, extended family, my amazing friends who spent countless hours at the hospital with me, my coworkers, and of course all of my well wishers.
If you or anyone you know suffers from NMO and would like someone to talk to, please do not hesitate to send me an email firstname.lastname@example.org.
Sumaira, I truly am sorry for all you have been through, but more so feel that you are true vision of inspiration and hope to others. as you have taken a negative and turned it into a positive. Too often in life we get involved because it touches home, and I have to say that your outlook on this situation is one that many will admire because in a world that it so easy to drown in our sorrows you are fighting back.. and that is admirable. Stay blessed! and always show the world who Sumaira is... beautiful, intelligent, funny, loving and above all a fighter in all sense of the word...ReplyDelete