Wednesday, September 20, 2017

A Thank You Letter to the Neurologist Who Saved My Life


I have talked a bit on different platforms about the long struggle that it was to get diagnosed many times before, and about my initial diagnosis of Dopa-Responsive Dystonia that my body proved wrong.  My initial diagnosis however set me on the course to getting the proper treatment when I was 18, and I cannot thank the general neurologist who managed to think outside the box and save my life.  I wanted to write him a thank you letter, but I have more to say than the 1000  character limit of my insurance’s email platform, so I decided to write the letter here and send him the link to my blog.  It is a nice thing to share here too.  Let it be known that without Dr. Wei, I would not be here today. 



Dear Dr. Wei,
It has been years now since you have seen me, I believe I was 19 or 20. Now I am a few weeks shy of 23.  The reason that I am writing to you is to say thank you, I would not be alive today if you hadn’t put the initial pieces of my diagnosis together back in 2012.
My life is complicated for sure, but it is amazing.  I went downhill pretty fast right after I turned 20, 2 years to the month after I started taking Sinemet I developed some severe Ldopa induced dyskinesia. From there it was a rapid decline until I was barely able to get up out of bed, I gave up driving, I could not walk safely without a cane at the least.  I had my first DBS (unilateral) on June 1, 2015 and my second on Dec 16, 2015.  The results are amazing to say the least. I could run around for the first time in years when they programmed my DBS.  I still take a ton of PD meds but it works. I have a great MDS neuro down in San Diego, she is worth the drive.
It doesn’t end there though, my gut shut down (gastroparesis and intestinal dysmotility) and I got a J-tube on December 2, 2015, about two weeks before my second DBS.   I was so miserable from starving, I was throwing up everything I was eating and I had no appetite.  Previously I was so active and then I was down to 105 lbs at 5’8”.  The tube was working for a while, it definitely improved the delivery of Sinemet (which we think is part of why I declined so fast). I ended up rejecting all of the formulas though, I was not able to get enough calories or hydration and even though I was running it for 24 hrs a day I was losing weight still.  I then ended up on TPN. I can’t eat at all really, but I have accepted that because I was so sick from the starvation, that I can handle being hooked up for 12 hours if it means I have the energy to go out and do what I love and live my life.

Despite all of the health challenges, and because of them too, I have gotten to do things that no one expected of me.  I graduated college in 4 years despite having two brain surgeries and a feeding tube put in.  I studied chemistry and then took time off to recover (I started TPN right after graduating.  It has been a year and a half, I was down to 100 lbs and now I am at 140 and feeling amazing).  I took the time to get to speak at amazing conferences like World Parkinson Congress and Stanford Medicine X.  Now that I am stable, I am going back to school for science, which is truly my passion.  I am applying for my doctorate in pharmacology.  My top choice at this time is UCSF, but I am still looking around.

The reason I am writing this to you is to say thank you so much for never giving up on me.  There were so many doctors before you who said ‘if I cant figure it out she must just be a dramatic teenage girl’.  You never stopped believing that someday we will find the answer.  I remember going home a few months before you trialed the Sinemet in October of 2012, where you really thought a panel we sent would show something and it didn’t, and there was nothing left at that time to do but wait.  I was devastated, I cannot explain how awful it is as a patient to be left without answers.  But you said ‘come back in a few months, I don’t have answers but this isn’t the end.’  Just by saying that you knew that no doctor can know everything, that just because you didn’t have an answer for me didn’t mean that I was not sick, that gave me more hope than I can even describe.  There were appointments where after talking to a doctor I would be so distraught that I would literally sob in the elevator, because all I knew was that my body is failing and no one is even trying to help me.  But after that appointment, in the elevator, I looked to my dad and just nodded.  I was of course upset that we didn’t have answers but for the first time in almost four years someone had not given up on me, and I can’t thank you enough for that.
I also can’t thank you enough for the wild idea to try Sinemet.  I honestly did not think it was going to work.  I went back to college with the rx and as it started to work I kept telling myself it wasn’t true. Two weeks later I went home for a weekend to visit my family, and they cried when they saw the difference in my movements and how much better I was moving. 
It saved my life and I mean that literally.  It set me on a path to figuring out the full puzzle of my diagnosis and the treatment gave me two absolutely beautiful years where I almost got to be a normal young adult.  Yes, I was always taking medicine and there were really painful and rough days, there was no doubting that I was still pretty sick, but I was managing really well.  I even got to do a Summer Fellowship in Baltimore at the Institute of Human Virology and live on my own on the other side of the country for a summer before things all went bad, and I really excelled academically.  Because of what I accomplished in the first two and a half years, I basically got away with taking 12 unit semesters for the last three when I was too sick to get up to go to class half the time.  But if you hadn’t made that initial discovery, I am pretty sure I would be actually dead right now.  Before my DBS I was having major issues swallowing, and I was frequently in the ER for freezing episodes which were so scary.  About two months before I had surgery I had woken up one day unable to walk or talk, though I was fully conscious.  I was taken to the hospital via ambulance and it took all day and a lot of benzos for me to be responsive again, there was nothing else anyone knew how to do. My quality of life was just awful.  Now even though I take 20+ pills a day and a patch, I run infusions for part of the day and have both a central line, a J tube, and a DBS unit, my life is an amazing and beautiful mess and I wouldn’t have it any other way.  I get to follow my dreams in a very different way, but it is mine and it is only here because one doctor had the compassion to never give up on me. 

All the best,
Jasmine Sturr


Saturday, September 2, 2017

Some Things Are More Than Coincidence

One of the greatest marvels of the world is that every moment in the entire history of the universe right up until now happened in such a way that I am sitting here on the way to the ophthalmologist's office typing this, or that you are wherever you are right now reading this. 









A Snapchat of my dilate eyes after my appointment















It was 2011 and I was a senior in high school. Just an average day, sitting in calculus wishing I was doing anything but finding the anti-derivative of whatever. I blinked a few times and something didn't feel right. I tried my best to ignore it, but it was just driving me crazy. At break I went into the bathroom and I saw some swelling around my left eye that was definitely not there a few hours before. Ignoring it I went about my day, finding it harder and harder to keep my left eye open. In the days before front facing cell phone cameras, I would pop over to the bathroom at some point during every class to look over my swollen eye, growing a little concerned that it wasn't getting any better and seemed to be getting worse. I went home that afternoon not stressing all that much. The next day though, I could not open up my eye at all. It was pretty clear that it was time we went to see someone. 

That begs the question, who exactly do you go see when your eye is swollen? Ocular emergency is a thing, a fairly infrequent thing, but certain issues can actually be vision threatening and require immediate care. Even still, it felt kinda weird to go to the ER with a swollen eye. With my insurance you can't just go to an ophthalmologist without a referral, and I actually didn't have a primary doc I could even call, I was not 18 yet and my previous pediatrician had left the hospital so I was just sort of waiting until I was 18 to go see my parent's primary doc. So I had no one who could just give me a referral. Then my dad gets the brilliant idea to call John, a family friend who is an ophthalmologist in private practice. He does not take our insurance but he tells my dad to just bring me in. 

Some numbing drops and an eyelid flip later he finds the culprit of the swelling, a little calcium deposit embedded in my eyelid. Basically a little rock. It is nothing insidious, it can happen to anyone. You have calcium in your body and sometimes excess calcium can form a deposit in your eyes, aggregates of calcium precipitate clump together in the form of an extremely annoying but nonthreatening rock in your eyelid. It was essentially scratching the surface of my eyelid, which is why my eye got so swollen so fast. Upon removing the rock from my eyelid, I instantly got better, I could independently open my eye again. He wrote me a script for some eye drops to take for a week as it healed. I thought that was it, but then he said something that really surprised me: I am seeing something worrying in the back of your eyes. I want to dilate them in a week, I think you might have glaucoma. 

What? Glaucoma? Isn't that for old people? 

See, this was before I had ever heard the word Parkinson's applied to me. This was my first old person's disease. I like to joke that I collect old person's diseases. I mean seriously who but me managed to get glaucoma and Parkinson's before I could legally vote? 

So a week went by. I remember talking to my anatomy teacher about it (which I was taking on top of physics as an elective, I was a nerd then too!). He asked me, well yeah glaucoma would be rare in someone your age but its possible, have you had headaches behind your eyes? 
I thought about it, and actually yes. I had been having headaches behind my eyes. But I didn't think much of it, probably just stress I presumed. Turns out it is an increased intra-ocular pressure (IOP) which causes this. Trying to push any worry out of my head, (which wasn't too hard given this was most definitely not my first time waiting on a medical test or test result) I went on with my week until my dilation day. I went back to John's office and they put the dilation drops in. 15 minutes later I had massive pupils and they did my first nerve fiber layer analysis. And there it was on paper. I definitely had glaucoma. 

That diagnosis was a bit of a shock to the system but it was quickly followed by the good news. While it looked like I had moderate damage we could prevent further damage. I was started on a once daily eye drop called Lumigan, a medication to lower my eye pressure. Its kept me stable since 2011, the pressure headaches are gone, and my eyesight has been saved. Apparently I have a tiny little blind spot that I don't even notice, it was picked up on a field vision test. Your brain is really good at compensating for that, and I wouldn't even know it was there if they didn't specifically look for it. 

Today's dilation was actually taking a picture of my optic nerve. The 'cupping' as its called is still there and pretty obvious when put next to a picture of what the back of your eye is supposed to look like, but it does not look worse than it did 5 years ago when they last took pictures in 2012. 

In 5 months I am going back for another fiber analysis, we like to have that done once a year or so. But so far, so good, things have been stable and it looks like the treatments are working beautifully.  As long as I keep up with it, I should not lose my peripheral vision. If my eye had not swollen up from a random embedded calcification, we would have never found my glaucoma. My ophthalmologist has told me that I would have noticed it somewhere between ages 30-40. Your brain is so good at compensating for blind spots that you wouldn't notice it until you had already lost 30-40% of your vision, and once nerve damage is done, you cannot undo it. 

So a rock in my eye saved my vision. Call it what you want, but I cant help but believe that this was not so random after all. 

I am tired of metal detectors

I am up late writing this at 1:20 am on a saturday night, or sunday morning if you will. The reason I am up is my PD insomnia as usual, but ...