Back to current day happenings in my life!
It seems rather uncanny to me that the last post I published described how I progressed through my first episode of optic neuritis in my right eye. Doctors I saw while still in New Jersey said that it should clear up in weeks to months (without steroids because I was moving home in less than two days). So I figured it would clear up while I was traveling. It never did and so vision in my right eye sucks.
I say uncanny because on November 11th, I noticed the faintest symptoms in the very outer periphery of my good (left) eye. That holiday Monday, I was exhausted all day, my head felt like concrete and I had a low grade headache. I made an appointment with an optometrist who happened to be open that day and had an opening. He confirmed my fears; optic neuritis has reared its ugly head in my good eye. One of the main doctors in the practice is a friend of a friend of our extended family. My mom contacted him to ask him to take a look at my chart from the other doctor’s exam of my eyes. His office immediately tried to set up an appointment with experienced neural ophthalmologists in Syracuse. When they couldn’t immediately accommodate or didn’t understand the urgency, he contacted a specialist at a hospital in Albany, New York who recommended that I go to Crouse Hospital for urgent MRI imaging and a three-day course of IV steroids to get the inflammation down. So, Tuesday evening last week, Mom and I headed up to Crouse Hospital at about 6:30pm to go to the ER. The optometrist had called ahead to alert them know that I was coming in.
It was long night in the ER. Mom stayed with me until about 12:30-1am when I told her to go home. I ended up having my first course of steroids then and had an MRI of my brain the next day. At about 3:20pm, a bed finally opened up on the neuroscience floor of Crouse and so I was moved upstairs from the ER. I was able to see a neurologist about an hour and a half later who had looked at my MRI scans and said they were cleared/negative for a multiple sclerosis (MS) diagnosis or another debilitating disease called neuromyelitis optica. Thankfully, I have only one tiny lesion on my brain in an area not associated with either of those diagnoses where the lesions usually are found and are quite a bit larger. The neurologist ordered a second MRI to get images of my c-spine which also came back clear.
I did a bit of reading and there are some other potential causes of optic neuritis. The ones I’ve seen are:
- Sleep apnea (I have not been sleeping well for a while)
- Exposure to environmental contaminants (the venue for the art show in which I displayed my canvas prints was an old factory and definitely smelled like gear oil, heavy metals, and who knows what else).
- Chronic infection somewhere in the body (subsequent to my wisdom teeth removal in NJ in October 2014, I had an infection from which I do not believe my sinuses have ever fully recovered from).
- Lyme disease (you all know at this point that I love the outdoors and so it was a potential to get a tick bite but I never noticed one and so never sought appropriate treatment).
- Neuromyelitis optica spectrum disorder: It’s an autoimmune response where there is potential to have two different types of antibodies that have been found in cases of optic neuritis. Blood tests for these two antibodies are pending.
Options 1, 2, and 3 are technically still possibilities, but I don’t think the most likely culprits. Option 4 has been ruled out by a negative blood test. Option 5 should be determined sometime next week. Lab results may be a bit delayed due to the holiday and upcoming weekend.
The neurologist at Crouse scheduled a follow-up appointment with a neural ophthalmologist associated with Upstate University Hospital here in Syracuse. I saw her Monday, November 19th. She wished she had been alerted to the level of urgency of my case earlier. Dr. Ko and her resident doctor were more extremely thorough in my exam and symptoms description than any other doctors I have seen to this point in time. It was incredible and inspired a high level of confidence. She immediately set up for me to be admitted to Upstate University Hospital for a 5-day therapeutic apheresis treatment procedure every other day; 10 days in the hospital. It shocked me a little and caught me off-guard. I was not expecting to go straight to another hospital and so had not packed any clothes or pajamas or books or anything! But a bed in the neurosciences wing was available right then and so she strongly recommended that I go immediately. After some inner discussion with myself and my Mom, who brought me to the appointment, I decided it would be worth the effort.
Apparently, there is a window of time in which vision lost due to inflammation of the optic nerves can be reversed. That window of time was 10 to 14 days I believe and I was already on day 8. So, Mom and I hopped in the car and headed to Upstate. I was admitted as quickly as mom parked the car. We headed up to the neurosciences department and were almost ushered into my room (which I have to myself which is nice).
Upstate University hospital is a teaching hospital and so I’ve been seen by amazing attending doctors and resident doctors who are learning. I actually really enjoy being able to be part of their learning experience. Experience has to start somewhere. All the doctors and staff have been absolutely top notch.
I was admitted Monday night, scheduled to have a central line (or vas-cath) put in sometime Tuesday (the OR was booked all day) and so I didn’t get it inserted in time to get the first apheresis treatment same day. The central line procedure was a bit nerve wracking. They got me all set on the operating table with all the coverings, all the nurses were assembled, and the surgeons in the room. They gave me local anesthetic and other medication via my IV port to relax and generally help sedate me. Now I have two tubes sticking out of my jugular vein in my neck and so I try not to make any sudden or abrupt movements…sure you can figure that one out.
So, Wednesday morning, I had my first apheresis procedure. Apheresis is the filtering of your blood through a very smart machine; it has a centrifuge which it spins your blood through and removes the plasma and antibodies and returns the blood combined with albumen back to your body. One treatment will process approximately one whole body volume of blood (at ~70% efficiency) in about an hour and a half. This will happen every other day. I was fine throughout the entire procedure until the very end when the apheresis nurses were pumping the blood that was in the machine once the treatment was done back into my body and unhooking my tubes. I started feeling a small ball of tightness in my chest which started expanding.
The nurses had been monitoring my blood pressure very carefully and that one measurement they initially thought “that can’t be right.” So they ran it again and that second measurement must have been lower than the initial low one. The nurse said “we’re going to lay you down now” (I was sitting up in my bed for the duration). They immediately started pumping me with saline solution and working to stabilizing my calcium level which the apheresis machine can put slightly out of balance due to a compound they introduce in the machine to inhibit clotting. The tight chest began to subside and then my forearms and below my knees began to feel as though they were vibrating. They had warned me this could happen during the procedure and so I was relatively prepared for it and was ready to alert them if I did start feeling that sensation. But no one expected this BP plummet at the end of the process. Hopefully we can avoid that excitement in tomorrow morning’s treatment.
That’s what’s going on with me at this point in time. Future travel plans are sort of on hold/TBD. Not sure what I will have time off from work for, when, and what budget. I’m anticipating a hefty medical bill from this little episode. But I will cross each bridge when they come and deal with them on their own time.
This time out of work, worrying about the future of my ability to see, and general feeling of aimlessness since I returned home from traveling and have gotten back to work has had me quite depressed and considering where I stand with my relationship with God. It has prompted some time of soul searching and assessment of my future and where I see myself going; not like I haven’t been doing that since I got home, but these issues with my eyes have just hastened or brought this whole process to a head. It has been very emotionally challenging but hopefully I will come out the other side of this stronger.