Health Update

I had a doctor's appointment today, and since it has been a while since I updated, I figured it was a good time to now. CLICK HERE for my last update.. I actually had an appointment at the beginning of June. My insurance denied my doctor's request to start Remicade infusions due to off-label indications. Long story short-they appealed the denial, but my insurance upheld the appeal, so I had an appointment to discuss treatment options. Well, when he examined my eye, he said it was looking "terrific", so he decided to give me a break from medications. He made me promise that I would call him with any changes, and scheduled me to see him at the beginning of September. I was a happy girl! CLICK HERE to read an article authored by Dr. Foster about my disease, Ocular Cicatricial Pemphigoid.

On Sunday morning when I woke up, my left eye felt "gritty"-it was red, irritated, and felt like there was something in it. Yesterday, it was the same. I decided to schedule an appointment and was pretty nervous. They got me in this morning. On the drive, I had my usual anxiety that I always have-my stomach was in knots and I was just really scared. Here is what was found on exam: my vision has decreased in my left eye, lots of dryness in my eyes, I had an inward-growing eyelash, blocked ducts both eyes, and lipid deposits under my left top eyelid-all signs that my eye disease has progressed since my last appointment. What does all of that mean? It means my medication break has ended. Dr. Foster has ordered
Rituxan infusions. Rituxan is a high-risk chemotherapy medication that is used to treat non-hodgkins lymphoma (and is also approved to treat OCP, so insurance approval should not be an issue). Heavy duty medication. I will be having WEEKLY six-hour infusions for eight weeks, then monthly for at least four months. I'm trying to tell myself that even though the 8 weeks will be tough, it's better than two years. Then, the infusion nurse explained to me that they have to monitor my blood pressure and vitals closely during infusions. They will also pre-medicate for allergic reactions, and pump extra fluids because Rituxan can cause CARDIAC PROBLEMS. I have a history of cardiomyopathy, so that is a concern. I have to see my Cardiologist to be cleared prior to starting the infusions. I called today and spoke to a PA-she is talking to my Cardiologist and is ordering an EKG and echocardiogram. I also have an appointment next week.

So, that is my update. A lot to take in. I'm scared & nervous, but it is what it is, so I'm just trying to focus on doing what I can do to get through this.

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