“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James
Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive. Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”
Let me give you a little background information. I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive. There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital. I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career. What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.
My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom. I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all. Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list. Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!
Shortly after my transplant, I exhibited some serious cognitive dysfunction. I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again. I began experiencing painful and distracting visual sensations, such as: colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!” Excuse me? What did you say? “You had brain surgery!” I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp. There was absolutely no other thought in my head at the time except, you’ve got to be effin’ kidding me?
Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had brain surgery? What for?I wondered. Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on immunosuppression in Greenville.
It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that. My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain. This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.
The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night. Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled. Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.
When I came back to consciousness the next day, there were doctors and family standing all-around me. “What is your name?” I was asked to write. My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique. He asked me to read something from across the room and write it down, so I did, without any problems. My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read. Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J). Hey, well at least they knew they didn’t cut out my sense of humor during surgery!
Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments. You’re probably thinking, wait you got excited to go to a doctor’s appointment? Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?
Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor. Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection). As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back. The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily. The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.
That sounds pretty serious, but I’m not scared at all. This June will be two-years since I survived my brain surgeries to remove the aspergillus. People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is unbelievable. Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!
I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it. My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation. I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.
One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life. For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well. If I didn’t get sick, I probably would have never changed my ways. The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.
In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire. My sickness wasn’t a curse; it was a blessing in disguise. It saved me from own worst enemy: myself. I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found 🙂
“If you don’t get lost, there’s a chance you may never be found.” ~Unknown
“With respect to cerebral aspergillosis, there is a clear difference in outcome between immunocompromised and nonimmunocompromised patients, as shown in table 1. Among the 141 immunocompromised patients with cerebral aspergillosis, 140 died, a mortality rate of 99%. In contrast, only two of the 15 nonimmunocompromised patients died, a mortality rate of 13%.”(Denning, David W., “Therapeutic Outcome in Invasive Aspergillosis”, Oxford Journals. 23 September 1996. Pg 10.)
I often find myself researching online about a variety of things. Sometimes it is current events, or sports, other times I will check out what Justin Timberlake is tweeting or get caught in reading some trashy article about a Kardashian, but often times I get absorbed into reading about various things concerning my medical adventure this past year.
This past weekend while doing some periodic researching, I found a couple of very interesting statistics in regards to my medical diagnosis. If you know me at all, or have followed my blogging, you already know I survived a miraculous liver transplant one year ago this past May (of 2012).
After I successfully became a recipient of a new liver, you may also be aware that I had two major brain surgeries shortly after, and was once again a survivor. I defied every odd and belief presented to me and still to this day I am referred to as the “miracle child” by my doctors because honestly, there is no medical reason I should be alive today. My body which had no absolutely no time whatsoever to heal from the trauma of having a liver transplant just a couple of weeks beforehand to then be a victim to an immensely fatal and unheard of cerebral fungal infection is nothing short of amazing. You know I had the brain surgeries but do you know what for? Or why? Probably not, so I thought I would try to explain in using the least amount of “big doctor’s words” as possible.
When you have a transplant of any kind, your life has changed forever, including all of the little things that you commonly overlook such as where and what you eat/drink, your daily routine and habits that you just perform without thinking about. One new aspect of my daily routine that I had to incorporate after transplant was taking my immunosuppressant medications on-time, three-times a day. Yes, I have a weekly pill box and have my phone set on a timer so I can swallow my 20+ pills on-time each day (hey, that is down from 46 a year ago!) Nine of these pills I will have to take each and every day for the rest of my life. Six of the nine are called identified as “anti-rejection” drugs. What is an anti-rejection you might ask?
When you have a transplant of any kind, your body recognizes the new organ in your body as “foreign” and it’s natural response is to reject it just like it would any other foreign object in your body. In order to “accept” the new organ and not “reject” it you must take the anti-rejection medication prescribed by your doctor every single morning and evening on a 12-hour cycle. Once you have your transplant, you see your transplant doctor quite regularly, which mine is at Yale-New Haven, located about an hour away from me. You are scheduled for blood work and check-up appointments with your transplant team every week after your transplant for the first month so your doctor can closely monitor the level of anti-rejection medication in your blood. Too much of your anti-rejection in your blood can result in toxicity and too little can result in possible organ rejection. After the first month, you are reduced from getting blood work done to every two weeks, then to every three-weeks, then to every month, two-months, three-months, etc. A week from this Thursday I have an appointment at Yale to get blood-work and have my liver check-up in which this will be my “one-year” post-transplant check-up! After this appointment I will be “promoted” to only having to see my transplant doc every two-months. YAY!!
As I mentioned, after my transplant, I will be on anti-rejections for the rest of my life. Anti-rejections are classified as immunosuppressants. What is an immunosuppressant? An immunosuppressant is a substance that performs immunosuppression of (weakens) the immune system. Why would I need my immune system weakened? To not “reject” my liver. What does weakening my immune system do? A weakened immune system is more susceptible to infections or diseases that target the immune system.
Once I received my transplant, I was, and currently am on anti-rejections like all transplant patients are. My body was already extremely weak from just surviving a liver transplant, not to mention all of the medical complications including losing my pulse four times and being revived. My body, nor did I, have any idea that I was going to have to endure two crucial brain surgeries, that would once again perform some serious stress on my body without any time for recovery. Everything happened so unexpectedly where there was no time to sit down and realize how incredibly quickly everything was happening. It’s really not that far-fetched to to say my body was trying to recover from being run over by a truck, and personally I wouldn’t hesitate to say it felt like the truck ran over my slowly, backed it up, and ran over it a good two times more.
So why did I have two brain surgeries after my transplant? As I mentioned after my transplant I was very weak and also immunosuppressed. Also, to be noted, I was in the hospital for an extended period of time, exposed and vulnerable to all of the sickness and illness floating around in the air waiting to be caught. By being so weak, immunosuppressed, and surrounded by sickness, meant I wasn’t in the best position to defend myself from any illness that came within close proximity to me.
With that being said, aspergillosis, is the most common fungus present floating everywhere in the world, through the air in the form of dust and present in mold. Typically, when it is inhaled it is not a threat and is destroyed by our immune system. You can probably see where I am going here. After my transplant my body was so weak, it could not destroy the aspergillosis as it got into my respitory system, then into my bloodstream, then up to my brain. Convenient right?
So after my transplant I was experiencing the most wicked headaches that I can even begin to describe, seeing flashing lights, and hearing voices which don’t exactly compliment my pounding, non-stop headache. Obviously, something isn’t right, so the next step was to get an MRI of my head to see if anything could be found. After a couple of unsuccessful attempts to get an MRI because of my resistance from the extreme pain and inability to sit still, finally it was discovered that aspergillosis has invaded my brain in the left occipital lobe.
No one really can easily say or spell invasive cerebral aspergilosis, so it is just much easier to refer to is an an abscess or infection in my brain. At this point docs have realized I have a very rare, and highly fatal fungal infection in my brain while my health is fading at a very rapid rate. Me, myself, and I have essentially “left the building” if you know what I mean.
So just shortly after receiving a liver transplant in which happened so unexpectedly yet in impeccable timing, I am now diagnosed with this shocking and terrifying diagnosis that no one has ever heard of. Luckily for me, as I mentioned, I had left the building mentally, but my poor family had just been through a very tough week emotionally after losing my pulse several times, barely getting a transplant before I kicked the bucket, and now they are being told I have this notably rare, and drastically lethal infection in my brain where the only option is to be invasive, and even then there isn’t too much medical hope for survival?!? I mean come on, what is going on here, an episode of Grey’s Anatomy? Unbelievable.
Even though I was out of it, and hardly “awake” my body must have known to turn-on “kick-ass mode”. All I remember is that I had gone to sleep with a headache one night, and two-days later when I woke up the date on dry-erase board was several days later than from when I last fell asleep. I also had tubes in my mouth which I didn’t have in when I last remembered going to bed. “Mo, you had a brain surgery.” What? I have no idea what you are talking about. I feel my head and there is still hair. I feel around and there are these little metal things all down the middle of my head. Holy shit, what is this bling in my head? Staples. Holy shit, I really did have brain surgery.
It was explained to me, but it never really sunk in. I didn’t have much time for it to sink in because even though they had performed one brain surgery, a bit of the infection still remained. My neuro-surgeons had removed a good portion of the infection, but due to it’s location, there was a very serious risk that the second surgery could result in my inability to see, speak, or potentially be paralyzed, and that is only if I made it out of surgery alive. I was immediately put on a very aggressive treatment of hardcore anti-fungal agents.
My neuro-surgeon was very hesitant to operate a second time, but since the follow-up MRI showed no improvement, he would have no choice but to put the knife to my head for a second time. If I did make it out alive, the chances of blindness, speech loss, and paralysis were even greater than they were for the first brain surgery. The risks of this brain surgery was even greater than any of the other surgeries beforehand since it was going to be the third major surgery within a matter of five weeks. The next option, and only option at this point, was to perform a second brain surgery.
I was “aware” when I went into my second brain surgery, and I was “aware” when I finally awoke a day after the surgery. When I awoke, I was incubated and my neurosurgeon, Dr. Matouk, asked me my name. I wrote down “Mo” and Dr. Matouk was like, “No, that’s not right.” and my sister was like, “Yes, that’s right, that is her nickname that she goes by.” So then he asked me to read something from a far and write it down, so I did. He was in utter amazement. Within two-days after surgery, I was able to take a few steps and walk, slowly but surely hobbling along like a stiff piece of wood. Then I started progressing my physical activity a little bit each day and was doing “laps” around the ninth floor of the transplant wing. No one could believe it. I was ready to do more, walk more, but everyone was pretty much like, “let’s take it easy, you’ve been through a lot”.
“Take it easy”, has never really been a part of my vocabulary to be quite honest. By not taking it easy, and continually pushing myself physically and mentally each and every single day is one of the reasons why I have healed like I have. It would have been easy to feel and say, “poor me” “why did this happen to me?” But I didn’t. Instead, I saw where I was, I didn’t like what I saw or how I felt, and I said to myself, if you want to “look normal” again and not look like a lifeless patient who has been hit by a 16-wheeler, then you are going to have to work hard at getting better. Really hard.
I would think to myself, “Right now, physically, there is not much you can do, but be patient, and keep thinking you can do things Try a little bit further each day than you did the day before, and that is all you can do. If you can do that, while staying positive and not let the best of your frustrations get to you, you will be rewarded for your efforts one day.” So that is what I did, and this is where I am. I had a lot of people praying for me and my health, so many cards and letters and words of praise and encouragement. I was constantly motivating myself to get better so I could one day hopefully “be normal” again rather than be sick on the verge of demise. So far I am pretty pleased with how I basically stared death in the face and said, “Get the hell outta my way!” Seriously, I’ve got things to do, and people to meet, like Justin Timberlake : )
Last month I had my check-up with my infectious disease doctor at Yale-New Haven, Dr. Topal. While all of my doctors are very important to me and my health, I consider my check-ups with my infectious disease doc to be one of my most important because the appointments with him are in regards to the life-threatening abscess I had in my brain in 2012, called “aspergillus fumigatus”. While that infection is no longer present due to the aggressive anti-fungal treatment I was on, I am still currently taking 12 pills/day of a very, very expensive medication ($4,400 a month) just to ensure that it does not return.
I really love my infectious disease doctor, Dr. Topal. Besides being so kind, you can tell he truly cares about his patients and seems to take the extra steps necessary to ensuring his patients are well-taken care of. For instance, each time I’ve had an appointment, Dr. Topal is the one himself typing up the summary of my visit, not just relaying information to the nurse for her to type it up. Dr. Schilsky, Dr. Rodriquez, and Dr. Assis, I have seen do this for me as well, and it is something I definitely notice and admire about them and their commitment to their profession.
The morning prior to meeting with Dr. Topal, I had an MRI taken of my brain to see if there had been any changes since my last MRI, taken five months beforehand. We unfortunately had to deal with some insurance issues, and my scheduled 9 am MRI wasn’t actually taken until much later. I finally had my MRI taken a little after noon, barely in time to get to Dr. Topal’s office located a couple of miles away at the Yale-New Haven Physicians Building.
After getting my vitals checked and sitting and waiting with my grandmother, Dr. Topal strolled in with another young doctor, I assume an attending. He briefly asks the basics, “How are you doing? How are you feeling?…..” I respond, “I’m great, I feel great”, because I did; and I do. “Well you look amazing.” “Thank you….”
Then Dr.Topal and I get into talking about how he had so much trouble with getting the MRI approved, and how he had to personally call and speak to my insurance to tell them how important the MRI is. I mean, it is an MRI of my brain. On-top of that, it is to make sure I still don’t have any remnants of a fatalinfection in there. No big deal right? I’m pretty sure that it is the most important MRI that I can possibly get at this point in time, so I do not know why the insurance always has to be an ass and make it so difficult each and every time to approve what is clearly without a doubt a very important MRI.
Sometimes, I really don’t understand insurance companies. Every single month, I have a very difficult time getting my medication on-time or approved without a hassle and having to make two or three different trips to Walgreens, because they my insurance only approved “partial” amounts. I take 12 Voriconazole pills/day. There are 30 pills in the bottle. Do the math, I go through the bottles like crazy. My pharmacy is approximately 10-15 minutes away, I don’t drive, it’s just a monthly pain-in-the-ass that my family and I have to deal with. But why? It’s not like I want to take a medication that costs nearly $4,500 a month? It’s not like I enjoy having to swallow an additional 12 pills/day on top of all of my anti-rejection medications and vitamins I now have to take after having my transplant. I don’t know many docs that would personally speak to the insurance, especially so promptly, but Dr.Topal did, got everything straightened out with my MRI, and I was highly impressed.
Anyway, after dealing with that inconvenience, Dr. Topal reminded me of my last visit several months ago, and my last MRI showing the aspergillus was no longer there, but there had still been lots of swelling. In comparison, this most current MRI (that I took earlier that morning) showed no abscess, and that the abscess, (the size of two finger-nails), had filled with fluid, with no edema (swelling) around it. I asked if that was normal, to have fluid fill where the abscess was, and he said yes, completely normal.
Dr. Topal went on to say I used to be anything but boring, I’m truly a “miracle child”, and that today my results were “boring,” which is a very good thing, and that he couldn’t be any happier with the results! Doc also said I’m one of only a handful of people since the early 2000’s to have survived and doing well with that type of fungal infection in their brain (invasive aspergillus) and post-surgery treatment. Most people don’t make it out of the hospital because the infection is so aggressive if not recognized and treated very aggressively immediately. With that being said, there is not much research to serve as a guideline as to how much medicine or for how long to treat me with. As long as my body is tolerating the Voriconazole, (which it is currently tolerating extremely well), I will continue my treatment of Voriconazole for an unknown period of time as a preventative measure so the aspergillus doesn’t return. Dr. Topal then went on to say he “doesn’t want to worry about me,” and so that is why they are keeping me on the Voriconazole for an extended period of time. That’s fine by me, because I surely don’t want to worry about me either, and if the aspergillus came back in my brain, that would be something very worrisome to not just me, but my doctors as well. Invasive aspergillus is a vicious monster that hopefully I have slain forever and ever.
I will be on Voriconazole for at least another year just to ensure that the infection does not return. Currently, I take a total of 27 pills/day which Is significantly less than the 46 pills/day I was taking at one point. When I do finally get off the Voriconazole it will be only about 15 pills a day for the rest of my life, and if I can kick some of these vitamins, maybe even less. The very, very least amount of pills I can ever take per day since my transplant is nine pills, which really isn’t that much to swallow, no pun intended.
The following week after seeing Dr. Topal, I had an appointment with my neuro-ophthalmologist at Yale-New Haven, Dr. Walsh. I have seen Dr. Walsh every few months since my transplant because my vision started to cause me problems back in the hospital following my liver transplant. I started having the worst pounding head-aches you could imagine. It felt like my head was being slammed against a concrete wall. That wasn’t all, I would also see bright flashing, moving, colored lights in the right hand corner of my visual field. I was in so much pain and extremely tormented by the flashing lights and voices I was hearing, I just wanted it to end. It felt like there was a painful disco going on in my head and I would have done anything in the world to make it stop. It got really bad and it didn’t take long for my doctors to realize something was really wrong, especially after once again during my hospital visit I was unconscious. I honestly don’t know how I got through it, all I know is I just wanted it to end; anyway, anyhow.
At first my medical team tried to put a patch over my right eye to see if that would make the flashing lights go away. I felt like all that did was block-out some of the brightness from the room. I was still in pain and annoyed by the pounding in my head the flashes I saw. Then my condition started to get really bad and I was in-and-out of a state of awareness. I vaguely recall one time when they were attempting to perform an MRI on my brain. I couldn’t even get through sitting still long enough for them to get an MRI it because my head hurt so excruciatingly bad and I was screaming for them to stop. Other times I kept trying to hold my head and squeeze it to put pressure on certain points to decrease the pain in any way I could. The whole not being able to tolerate pain is extremely unlikely for me. I can usually I can endure the utmost pain without letting anyone know something hurts me if that is any indicator to you how painful it was.
My doctors eventually discovered an extremely rare, and very aggressive fungal infection in my brain called aspergillus. Immunosuppressed patients with aspergillus in their brain is very rare. What is even more is them surviving. My doctor’s only option was to operate, but the likelihood that I could come out with any vision, able to speak, or not paralyzed were not very good at all. That’s even if I survived at all, which was extremely unlikely anyway, and even more so when considering what my body had already went through weeks prior (seizures, cardiac arrest, liver transplant, massive blood transfusion).
Once I had my first brain surgery, I lost my sight to the right in both of my eyes. If you drew a line down the center of each of my eyes, the right half of each of my eyes can no longer produce an image in my brain for me to see. The fungal infection in my brain, located in the left occipital lobe of my brain The occipital lobe is responsible for your visual and speech output. As you may or may not have learned in biology class, the left side of your brain affects the right side of your body, and the right side of your brain affects the left side of your body. Due to the location of my infection (on the left side of my brain), it caused a visual cut to the right side. This field cut is called Homonymous Hemianopia. I can hardly say that correctly, so I, like many others just refer to my visual deficit as HH.
With this type of visual cut in both of my eyes, I was highly prone to word blindness with writing and reading impairments. I am extremely lucky in that I was spared about 3 degrees in my central-right peripheral vision, and because of this I am able to read and write with no difficulty at all. Initially, I did have some reading issues and episodes of dyslexic letters, but after a short time of exercising my brain I was able to resume reading and writing without any problems at all. I had some speech difficulties when I was first discharged and talked very, very slowly, and slurred often. I would avoid certain words just because I couldn’t say them confidently. It didn’t take long for my speech to resume to normalcy after speech therapy, while I do notice I do still tend to slur when I get very tired and sometimes I still chose to avoid using certain words when I am on the tired side.
The first couple of weeks after my brain surgeries, I had to shut-one eye and squint to text and read because it was very hard to see, things were not aligned. That definitely corrected itself or I have learned to compensate better than expected so I am very, very grateful for that. One thing I have noticed, is that while working on the computer, I can’t see things on the right side of my computer screen. Also, when I am watching TV, I can’t I see the whole screen. I have to constantly shift my eyes to the right side of the screen just to see what’s over there, as whatever is in my right peripheral has just “disappeared”. I can’t imagine not being able to read and write, since those are two of my outlets that I now turn to while being confided to the house so often.
I was discharged from the hospital in June 2012 and from then until this March 2013 I have gone to three appointments with my neuro-opthamologist, Dr. Walsh, and once with my optometrist at Opticare locally, here in Danbury, CT. I have taken three visual tests during that time all with Dr. Walsh at Yale in New-Haven, CT.
Dr. Walsh has been around a very long time, and has a lot of credibility under his belt. On the Yale website, the little blurb about Dr. Walsh says, “ Dr. Walsh was named Distinguished Graduate by Bowman-Gray School of Medicine in 1983, and received an honorary degree from Bejing University in 2004. He is the author of two textbooks related to Neuro-ophthalmology, including Visual Fields, published by the Academy of Ophthalmology and now in its third edition. He serves on the Telemedicine Board of Orbis International, and has more than 20 articles online. He is a frequent lecturer at other universities, and a frequent contributor to the literature.” Sounds impressive and credible.
After my most recent visual field test, Dr. Walsh reported to me the words I did not really want to hear. His exact words in regards to my visual field exam were, “Status quo.” Status quo? I’m an athlete, and hearing anything besides “better” or there is “improvement”is not what I want to hear, ever. Dr. Walsh went on to say, “The good news is, nothing worse. Nothing is better, but it is exactly the same. It is not worse so that is good.” Okay, well I’m glad it’s not worse, but honestly I was never thinking in that direction! I was actually hoping that it may have gotten slightly better, since Dr. Topal told me the week before that the swelling was gone in my brain. I thought perhaps, less pressure on my optic nerve may mean there was a miracle chance that some of my vision would gradually return and eventually I could drive? I know that is a stretch, but I am all about wishful thinking. I mean, it’s a miracle I’m alive, on more than one occasion already, so I’m pretty sure another “miracle” isn’t that much more to ask for, right? Apparently my ambitious expectations were a long-shot and what I thought was completely wrong, according to how I interpreted Dr. Walsh’s report to me.
So my next question was, “I’ve looked up prism glasses online and how they can expand your visual field, can I get those and would they assist me in being able to drive?” Dr. Walsh, said, well, no, because I have homonymous hemianopia. I pretty much only see what is to my left or directly in-front of me, almost nothing to the right, at all. You could be standing to my right with your middle-finger directed right at me if your’e standing on my right side and I wouldn’t have a clue that you were even there. Go ahead, you can get your free shot haha.
I was fortunately spared a few slight degrees to the right of central (3 degrees), which is an enormous help me with reading. For the most part in the books I have read, I have been able to see the entire page of the book and have learned to scan better so I can shift my eyes to make sure I have read all of the words on the page. Some HH patients only see half of the page and so they may skip half the words on the page simply because they do not see it.
I can only see directly in-front of me, which is obviously a safety issue for driving. “It is illegal to drive, ” Dr. Walsh says in a which came off to me as a not-so pleasant, slightly condescending tone, assuming as-if had been cruising around illegally, (which I certainly have not excluding once in a parking lot, and on the quad (4-wheeler) in our backyard). The other doctor in my exam room, much younger, (and very handsome I might add), chirps in and says that, “Legally to be able to drive in the state of Connecticut you need to have 140 degrees in your visual field to legally drive.”
Originally when I lost my vision while I was in the ICU at Yale, I just thought I had an issue with my right eye since I can’t see to the right, It took a visual field exam and neuro-opthamologist to tell me that I had a field cut in both eyes to the right side. Apparently there is a name for this “disability” as I have been labelled by the government. I can never say it correctly, but I did read up on it (which I found here: http://www.eyeassociates.com/hemianopsia_article_blue.htm and http://www.hemianopsia.net/).
In-order to drive in Connecticut you need to pass the visual field test which is set for 140 degrees peripheral vision. My doc said I have about three degrees right of central, so around 93 degrees, I’m assuming that is. Prism glasses can give you about 20-30 extra degrees, so if I could get those, that would put me at about 120 degrees, at best, still short of what I need legally to drive in Connecticut. Maybe I can move to Iowa or somewhere in the Midwest, I bet their laws are less strict. If worst comes to worst maybe I can live there and ride a cow for transportation, lol. MOOOOOOOve, biatch, get out the way!
I think my heart broke into a million pieces when I heard this. He totally made me feel like it’s nothing at all to never be able to drive again. The thought of having your driving privileges taken away for the rest of your life, in my opinion, is one of the worst things has happened to me during this whole transplant experience. It has taken away my entire independence and freedom, two things that I took for granted prior to my transplant. Yes, my family is plentiful and very loving, caring, and self-sacrificing for the most part. While I am so grateful and fortunate to have the amazing family I have, it does not eliminate the fact that I so desperately crave my independence back, and there is not anything else in the world I want that to one day be able to drive again.
That crushing news a few weeks ago was one of the biggest disappointments I have been told thus far. I was balancing fighting back the tears and being so extremely mad at the same moment. I bottled up that frustration for a good few days while my family kept assuring me the world is not over and that one day, I will be driving again. At first, I really did lose hope for several days. I let that negative diagnosis said consume my mind with the worst possible thoughts and drained my head with misery and limited self-worth. Then, something my family said finally got me thinking. They said, “Well the doctors also said you wouldn’t be alive, and you are. They also said you might be paralyzed, or completely blind, and you aren’t, so the doctors aren’t always right, Mo. You gotta stay positive, one day there is going to be something, there will be some sort of technology and you will be able to drive again Mo.”
I just needed to hear it, and that triggered a “you’re right” moment in my head and I started daydreaming like I normally do thinking of me driving again one-day, and my back-up plan of having a personal driver named Gesualdo that we would call “Waldo” for short for the specific purpose of when I had to call him, I could say, “Where’s Waldo?” Haha.
While my vision may not ever come back, that does not mean some brilliant, ingenious scientist will create some sort of visual assistance gear that will be able to expand my visual field where I can eventually see to the right, and perhaps, maybe even be able to drive. Years ago, people with amputated legs were told they were never able to run again, and now I’ve read an article where a man had not one, but two prosthetic legs, and has run over 9 half-marathons! That is crazy and so bad-ass all at the same time! If they think they are going to tell me I can’t drive, and I am just going to let that be it, then they are very, very wrong. I just have to figure out how to get there, but it is written-down on my long-term goal list, my journal, and hangs on my vision wall. I will have that checked off if it is the last thing I do in this life, and if you know me at all, if I say I’m going to do something, it gets done.
I may not be able to see anywhere near what you see, but you wouldn’t know it. I have learned to compensate pretty well. I did walk in New York City alone on New Years Eve, and even though it was slightly overwhelming, I only bumped into a few people, and tripped only once, so that is pretty good if you ask me considering how mad swarmed the city is on that particular day. I still am having a little trouble though. I went again to NYC with my sister this year, and somehow I managed to get my foot stuck underneath the wheel of a baby stroller that I collided with head on that I failed to see. My sister still won’t let that one go.
A few weeks ago at the grocery, I was walking down the central aisle, with my head turned 90 degrees to the left looking down the aisles and there was a random “sale box” of items that I did not see at all and I totally slammed into that. The other day I went to pick up something off of the floor and I slammed my head hard into the table because I couldn’t see it when I went to bend over. I do walk into the side of the door-frames from time-to-time from cutting the corners too sharp, and I definitely still do bump into people at the store. Overall though, I have learned coping mechanisms such as siting in certain places around the table, and walking along-side people on my left so I can see them and stay close to the wall or edge as a guide.
As of November 2013 I started going to visual therapy at Eye Care Associates, an hour away in Southport, CT. I will write an updated blog in regards to that when that has concluded. What is written below is dated from March 2013.
As I mentioned, I am going to two eye doctors, and my optometrist at Opticare said let’s wait a year and see if my vision has changed at all and see if we can look into prism glasses eventually. I will try to be more patient and hopefully my next visits to the eye doctor will be more optimistic. “Dream lofty dreams, and as you dream, so shall you become. Your vision is the promise of what you shall one day be. Your ideal is the prophecy of what you shall at last unveil.” ~James Allen
In the meantime, I will continue my blogging and on my gluten-free recipe blog that I created which I really have enjoyed trying to create delicious gluten-free recipes (www.glutenfreegesualdi.wordpress.com). I also enjoy my involvement in our young leadership group, COPE and plan on participating in Donate Life New Connecticut events and the American Liver Foundation’s “Liver Life Walk” each year annually. I have also joined Toastmasters International and after my first speech I won the “Kalley Award” for most impact on the speech and voted “best speech” of the night by the club! That felt pretty rewarding and things that like keep me motivated to keep going. You can also keep tabs on me and check my full story and pictures on my own personal website www.justsaymo.org!
I leave with this quote for myself, and for you as well. “If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with success unexpected in common hours.” ~Henry David Thoreau