This is my medical update. I will follow-up with an emotional update and how I'm trying to move forward while living with a chronic, incurable eye disease.
It's been almost seven months since my last update (click to read). Seven long months. The tremors stopped and most of the side effects subsided. I finished my eight weekly infusions. About two weeks after my last one, I started feeling better. Much better! I was nervous before my first monthly one, but I did ok. Having a month in between definitely helped with recovery. I went for my December infusion on the 20th (my twin daughters' 7th birthday!). Dr. Foster examined my eyes and said I was on my way to remission-my eyes looked excellent!
Life was good...I only had two more monthly infusions left! On December 17 (Happy Birthday to me!), I had a foreign body sensation in my left eye and sat & cried at the table....I knew this was not going to be good. I went to the on-call doc in Portland and he removed some ingrowing lashes. On December 28, our friends came from New York to visit. The next day, I started feeling a foreign body sensation in my left eye. I thought I had something in it, but was a bit concerned when no matter how many drops I used, or flushed it several times, it kept getting worse. It was irritated and started feeling painful. I lived with it for the next two days. Our friends left on New Year's Eve, and at that point it was very painful. I tried pushing through because my cousin & her husband were coming over that evening for a little NYE party. I was excited and just ready to have some fun! Well, my eye had other plans. By late afternoon, I was feeling a tugging sensation and I had to completely cover my eye because whenever light would hit it, it felt like it was being ripped from the socket. By the time Stacy & Paul arrived, I was wearing sunglasses,while clutching a facecloth over my eye. Anand kept telling me I needed to go to the dr, but again, I just wanted to have fun for a change! I called the doc on call at MERSI. She told me to call my Portland eye doc and to start there. I called the on-call doc and we headed to meet him at the office at 8:00 on NYE. He examined and said I had a corneal erosion. He put some ointment and patched it. He told me the cornea heals quickly, so y morning it should be much better. Well, by the time we got home (11:30 on NYE), the anesthetic drops had worn off and I was in quite a bit of pain. I figured if I could muddle through until morning, it would feel better. I did not sleep at all, and finally, at 5:00 in the morning, I woke Anand up and told him I had to go to the ER for the pain. It was excruciating, and I could not take it anymore. I called the dr I saw the night before to inform him. We got to the ER and the dr examined my eye and gave me an injection for pain and oral medication, along with a prescription for more. I got home and, finally, after about 2 hours, I felt some relief. I slept all day. The next couple of days were spent seeing more docs-unfortunately it was the holiday season, so I ended up seeing on-call docs instead of my regular doctors. Finally, on Jan. 3, I saw my regular local eye doc who immediately informed me that it looked like I had an infection. We decided to go directly to Dr. Foster in Cambridge due to my underlying eye disease. I don't remember the drive at all...I was in excruciating pain, the light sensitivity was horrific, and of course-there was a snowstorm. When we arrived at MERSI, Dr. Foster took one look at my eye and he immediately went into action mode. He told us that I had 2 really bad infected, large corneal ulcers. He wasn't sure that he could save my vision, but he said he would do his best to try. He admitted me to Massachusetts Eye & Ear Infirmary for a week. I had to have corneal scrapings, a CT Scan, and eye drops every half hour around the clock. I met with several doctors and had two different IV antibiotics. I was in the hospital for a week. When I was finally discharged, my vision was pretty much restored, but my eye was horribly swollen, and the skin around it was red and irritated from all the heavy duty antibiotic drops. I was very happy to be home, but also very scared about what would happen next.
I went for my monthly infusion, where I learned that I would have more than two more to come. Due to the recent events with my eye, we could not stop. If we were to stop, if I had a flare, we would have to start a new protocol (which would mean weekly infusions). Dr. Foster's hope was that we could taper off. I had my February, March, and April infusions. I had several issues during that time...allergic reactions which left my eye swollen & puffy with irritated skin. We discovered one culprit was an anesthetic drop that was used to check the pressure in my eyes. It happened again in April while we were on vacation, but at this point I can self-treat with lots of steroid drops & Aquafor cream on the skin. I am scheduled with an allergist and also an ENT in Boston due to the reactions, and also inflammation in my nasal passages which may be due to my OCP.
Last week, I went to my primary doc due to a cough and other URI symptoms that would not go away. I was diagnosed with pneumonia. Since my immune system is suppressed, things can go downhill quickly, so I panicked on Friday when I felt like I was no better. My doc sent me to Express Care-they did a chest x-ray and labs-all were good and my lungs sounded better, which was great, but why am I still feeling no better? Seriously...it never ends. As of today, I am feeling much better. I walked around outside some on Saturday, which was nice.
This was definitely long, and if you're still reading, kudos to you! I'll follow-up this post with how I've been doing emotionally with all of this. It will be long! Then, I will post about my plans for moving forward. One of my goals is to blog every day for the rest of the month. I want to feel like me again, and I enjoy blogging!
I'm baaaack!!!
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