“Right Homonymous Hemianopia and Seizures in Transplant Patient”

All of my medical friends will probably find this article interesting–

If you didn’t know already, I’m one of less than a handful of known survivors world-wide to overcome Invasive Aspergillus while on transplant immunosuppression medication.  Due to the severe shortage of patients to survive this infection, my transplant doctor and and my transplant surgeon, Dr. Schilsky and Dr. Manuel Rodriguez Davalos​​, wrote an article that was recently published in the American Journal of Transplantation to assist other doctors and medical staff better understand the complications, risk factors, and symptoms of transplant patients.  This article will hopefully facilitate transplant doctors to recognize abnormal symptoms of post-transplant patients so they can make a timely and educated diagnostic evaluation and possibly save more patient’s lives affected by Invasive Aspergillus.  Thank you to Dr. Rodriguez, Dr. Schilsky, and the medical staff at Yale-New Haven hospital for everything they have done to save my life 🙂

http://onlinelibrary.wiley.com/doi/10.1111/ajt.12870/full

#AmericanJournalofTransplantation #Transplant #Liver #Hemianopsia #Aspergillus #Yale #YNHH #OrganTransplant #LiverTransplant

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“I Can’t, I Can, I Will….Drive Again!”

“If you think you can do a thing, or you think you can’t do a thing, you’re right.” ~Henry Ford, American Industrialist, Founder of Ford Motor CompanyIcanticaniwill

If you are a follower of mine, you probably already know that 20 months ago after my miraculous liver transplant and two brain surgeries, I lost about half of my visual field out of both of my eyes.  There is a fancy name for this symmetrical cut in the right hemisphere of both of my eyes, and it is called Homonymous Hemianopia (HH for short).

Upon being officially diagnosed with HH back in July of 2012, I soon realized I was going to have a difficult road ahead of me.  Dr. Walsh, my neuro-ophthalmologist at Yale-New Haven Hospital, was one of the first people to tell me that I wasn’t going to be able to drive, and he said probably never again. I was initially having some issues with bumping into people and the occasional wall, table, and counter when I lost my visual field.  I had quickly learned to adapt by turning my head, scanning more effectively, and by simply walking more carefully.  I had assumed my vision would come back once some time passed after my surgeries and my medications were lowered, but my assumptions were apparently on the very optimistic side.  I was unaware that patients diagnosed with HH hardly never see significant improvement in their visual field, and will most likely never have their vision fully restored.

My visual field test which shows homonymous hemianopsia (black is where I can not see)

My visual field test from 2013 shows homonymous hemianopia.


My visual field test of the other eye shows almost exactly the same amount of visual field

HH produces a visual deficit to the right half of both my right and left and eyes.

The British Journal of Ophthalmology contains an article called, “Can Visual Function be Restored in Patients with Homonymous Hemianopia?” An excerpt from the article reads,

“Regarding field defects of vascular origin, the prognosis for spontaneous recovery is poor. Any recovery of a complete hemianopia occurs in the first 10 days after which further recovery is unlikely. Recovery of a partial defect is usually maximal within the first 48 hours. Less than 10% of patients recover their full field, and a proportion of these will, nevertheless, continue to complain about their visual function because of coexisting parietal lobe involvement. Up to 50% show spontaneous regression of varying degrees. The pattern of recovery largely depends on the extent of cerebral damage that is reversible and this, in turn, relies on the state of the collateral circulation. Further recovery is negligible after 10–12 weeks.  The extent of visual recovery correlates negatively with age, a history of diabetes or hypertension, and the presence of cognitive, language, or memory impairment. Vision returns to the perimetrically blind field in definite temporal stages starting with the perception of light, motion, form, colour and, finally, stereognosis.  Traumatic hemianopia behaves somewhat differently. Large areas of the visual field frequently recover, although the functions regained are unstable and often limited to the perception of light.  The body of evidence would therefore suggest hemianopia is not always an absolute and permanent visual loss. This raises the question as to whether the natural course of a hemianopia can be advantageously manipulated by therapeutic intervention.”

[Pambakian, A L M & Kennard, C. (1997) Can Visual Function Be Restored in Homonymous Hemianopia Patients? British Journal of Ophthalmology, Vol. 81(4), 324-328,  http://bjo.bmj.com/content/81/4/324.full%5D

The first three months passed after my diagnosis–no improvement; then six months, then a year, and still, nothing.  I would be lying if I said I hadn’t become somewhat discouraged that my vision didn’t start coming back after about six months, I so desperately needed even the slightest sign to keep my hope afloat.

I was 27 years old at the time when I first told I would never be able to drive again.  This was completely self-defeating to hear.  I never realized how crucial driving had become to my everyday life. Once I was discharged from the hospital I was quick to learn that my independence and freedom relied heavily on getting around on my own.  When I no longer had the luxury of hopping in my Kia Sportage and driving off, I searched for my next viable option.

What about public transportation?  The public transportation offered in Danbury, CT isn’t accessible from where I live.  I can’t walk to or from a bus safely in a decent amount of time from where I live either.  But you’re on Disability, can’t Disability help you?  The SweetHart bus–public transportation offered to disabled people, great!  I was approved, and taken to one appointment.  I tried to call again the following week for another appointment.  I was calling nine days prior to the appointment inquiring a ride. I was told there were  “no available drivers” and to call the next day to see if there was a cancellation. I called for the next four days, and still the SweetHart company had no openings to take me to my therapy appointment.

I called the SweetHart bus another time, on a Friday, to see if I could get a ride to the mall.  The lady on the phone from the SweetHart company informed me, (with an unfriendly attitude) that last-minute rides are reserved for emergencies like if someone has a “toothache” and needs a ride to the doctor.  She literally said “toothache.”  I tried to tell her my situation that I am unable to drive and I wasn’t trying to take advantage of the service.  I had been stuck at home for days with no way of leaving, I just wanted to get out of the house and I thought this service was to help people like me.  This lady was reserving my requested ride for a possible “toothache” call, and wasn’t going to budge.

At that moment I decided that the SweetHart bus was not interested in helping me with my situation.  I almost felt somewhat discriminated against for not being “disabled” enough.  I had also been denied of services from the Bureau of Education and Services  for the Blind (BESB) as they have decided I am essentially not blind enough according to their definition of “legally blind.” So what you’re saying is I’m not blind enough?   I’m too blind to see anything directly to my right and I’m too blind to legally drive a car, yet I’m not blind enough to be helped by the Bureau of Education and Services for the Blind??   That doesn’t make a lot of sense to me.

Not being able to drive restricts freedom, independence, and quality of life.   When you can’t drive and you are nowhere near decent public transportation, then what are you supposed to do?  Find a way, because I’ll tell you now, being stuck in Danbury, CT without reliable transportation is not an ideal situation to be in.

Check-up after check-up, my visual field reports have remained “status quo”.  Time and time again I have heard, “Your vision probably isn’t going to get better…You won’t be able to drive.  Move to where there is good public transportation..I don’t know what to tell you.”  At first I honestly let those negative comments get to me.  It was a natural instinct for me to believe my doctor, I mean he’s the one who has gone to medical school and all, not me.  I immediately became discouraged.

My aunt attempted to bring up my spirits by reminding me that as much as doctors and statistics may be something you trust, it doesn’t necessarily mean they are always 100% right.  If that were the case I should have been easily dead 20 months ago.  With an infection that has only allowed less than five immunosuppressant survivors EVER, it is quite the miracle that I am alive and well enough to be typing this.  The fact of the matter is I am alive, not only defying the odds themselves, but I am doing far more incredible than anyone could have every projected. I am living proof that the odds were not entirely impossible of overcoming, so doesn’t that mean there are other odds out there that are ready for me to defy?  You’re damn right there is.

If you remember correctly, I told you my doc said if my vision didn’t come back in the first three-six months, that it most likely will never come back, right?  Well part of me just can’t seem to accept that.  I’m back to optimal physical, mental, and emotional health, not to mention I am only 28 years old.  I am far more flexible and adaptable than say a 70-year-old with the same visual impairment as me.  I am much stronger, I am far less medicated than I was even a year ago, and you’re still going to tell me you don’t think I am ever going to be able to drive again?!  Don’t you agree that is a rather closed-minded way of thinking, especially with all of the technological developments over the past decade?  Soon cars will driving themselves for crying out loud!  If that is what you truly believe–that I will never be operating a motor vehicle from the driver’s position again, legally–then I regret to inform you that you are wrong! I may have had two brain surgeries but I am not soft, I still have one of the hardest heads you’ll come to find and being told “no” doesn’t come easy to me!

Yes, I have come across a couple of road blocks.  That doesn’t mean give up and turn around, it means find another way to get around the damn obstacle!  I don’t care if it is under, over, to the side, or through it, I will get by this road block!  It may not be tomorrow, this month, or this year, but it will happen, believe me.

You may or may not be doubting me, but you’re probably still wondering how are you going to do that Mo?  While I would love to be able to give you a detailed and mistake-free strategy of how I plan to accomplish this, I don’t have one.  What I do have are some goals that I am currently in the midst of pursuing.

Since this past November (2013) I started going to visual therapy in Southport, CT at Eye Care Associates.  I heard about Dr. Schulman in Southport and visual therapy from one of my old college roommates from Furman, who now happens to be an optometrist.  Once a week, on Mondays at 11:00 am, I have visual therapy with my visual therapist, April.

My visual therapy consists of training my eyes using different things such as an eye patch and prism glasses to force my brain to engage in new ways of seeing things.

My visual therapy consists of training my eyes using different things such as an eye patch, prism glasses, 3D glasses, prism flippers, etc. to force my brain to engage in new ways of seeing things.

My sessions with April started small with April giving me an eye patch to wear, and her moving a pencil around in air as I follow it with my eyes.  Each week I have had to do more and add-on to the previous week.  Now I am up to wearing 3D glasses, prism flippers, all while walking back-and-forth trying to maintain my balance across a wooden balance beam while reading numbers and letters on the wall.

I often look silly and was at times skeptical about the visual exercises I had to perform thinking to myself, “This is stupid. How is this going to make me see more?  I’m not wasting my time….”  I was very close to calling it quits, deciding that I had a better way to spend anymore of the very little money I have.  I rationalized with myself, weighed the pros and cons of visual therapy, and decided to give myself a little more time in visual therapy, at least until I saw my progress report.

My 3D visual practice exercises I do at home.

My 3D visual practice exercises I do at home.

Last week I had my most recent visual field exam taken by my neuro-ophthalmologist at Yale.  Once again, Dr. Walsh prefaced the appointment by telling me that my previous appointments have shown I have Homonymous Hemianopia.  He is very much aware of my desire to be able to drive again, but he never hesitates to inform me that he still doesn’t think it will ever be safe to drive, therefore if I do ever drive it will never be under his authorization.  Not exactly what I want to hear, especially since I had yet to take my visual field exam that day.  Alright, let’s take the test already, before you start discouraging me even more than you already have Mr. Scrooge.

Working my brain hard by multi-tasking. Reading the 3D chart and using the prism flippers, flipping the glasses after each line, all while balancing.

Working my brain hard by multi-tasking. Reading the 3D chart and using the prism flippers, flipping the glasses after each line, all while balancing.

Finally, I get directed to the room where my visual field is going to be taken.  I was handed my “clicker” and had to click every time I saw a light, dull or bright, shine anywhere on the screen.  I finished, and I asked the lady who administered the exam if she could print out my results for me.  Even though she seemed extremely shorthanded and busy, she was still very kind to me, agreed, and handed me my print out upon completion of my exam.  The print out showed my previous visual field exam results from July 2013, and the one I just took, six months later, January 23, 2014.

I looked at the results and my mouth quickly dropped to the ground.  After what seemed like several moments of my jaw hanging from my face, I was able to reel it in, produce a smile and excitedly yell while simultaneously asking, “It got better didn’t it?!?”  The lady who administered the visual field said, “Looks like it, good luck with your driving,” in a way that she too hopes I will be able to drive again one day. 

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My left eye visual field progress comparison. Top half of the page is from July 2013 and the bottom half is from January 2014.


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My right eye visual field progress comparison. Top half of the page is from July 2013 and the bottom half is from January 2014.  As you can see, there are two white areas in the first quadrant of the eye that were not there in July which shows some improvement in both eyes!

 

 

 

 

 

 

 

 

 

 

 

At this point my excitement can hardly be contained!  I am so thrilled just that my vision got a tad, somewhat, any bit better at all!  I know it is not enough to drive, but considering the fact that there is improvement, to me, is a sign that I might have one more miracle left in me!  I have been told by various people and sources that if visual field in HH patients doesn’t return in the first three-six months, it most likely will not.  For my visual field to have shown no improvement over my past four visits, but then suddenly there is unexpected improvement after the fourth follow-up, that is a major thing! 

The only thing different I have been doing since my previous visual field exam six months ago, is that I started going to visual therapy once a week and doing daily practice visual therapy homework exercises.  That has apparently been the difference, despite being told it wouldn’t make a difference, and that it wasn’t worth my time or money.

So I bet you guessed it, you will find my ass at visual therapy in Southport, CT at Eye Care Associates every Monday at 11 until they kick me out!  I will also be doing my practice exercises throughout the week, because this girl has more work to do!  I can’t, I can, I will drive again, just watch me!

“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson, American Poet, Champion of Individualism, leader of Transcendentalism movement.

“Pain in the Aspergillus” & Homonymous Hemianopia (HH)

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 fatal infection 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.

MRi pre-cranitomy (top) and post-craniotomy (bottom).  You can see the infection in the white, and then where they removed it.  Notice how much swelling was present before my surgeries.

MRi pre-craniotomy (top) and post both of my craniotomies (bottom) performed May 23 & June 1, 2012 . You can see the infection in the white, and then where it was removed.  Notice how much swelling was present before my surgeries. (The bottom MRI, from June 1, 2012, does not show my most recent MRIs with no abscess or swelling left. Unfortunately, I have not seen those in person.)

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.

They put a patch on my eye to try to minimize the flashing lights and extremely painful headaches

My medical team at Yale-New Haven put a patch on my eye and alternated between hot and cold packs to try to minimize the flashing lights and extremely painful headaches

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.

After my first brain surgery, my aunt Dana (left), and my aunt Caryn (right).

After my first brain surgery, my aunt Dana (left), and my aunt Caryn (right).

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!

My visual field test which shows homonymous hemianopsia (black is where I can not see)

My visual field test which shows homonymous hemiaopia (black is where I can not see)

My visual field test of the other eye shows almost exactly the same amount of visual field

Each eye shows almost exactly the same visual field loss to the right

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