And the hits just keep on coming 6/29/2017

I saw the neuro-ophthalmologist this morning, with the thought that, based on our last visit, he would fit me for fresnel lens glasses if my eyes were not completely recovered from double vision.

His evaluation showed that....my eyes are worse. Fresnel lenses may be too heavy to wear. So he wants me to see another doctor in his office for evaluation for surgery. Unfortunately, the soonest I can get an appointment is............... August 15th. After calling around to several other ophthalmologists who treat adult strabismus, this may be the best I can get. Other docs are scheduling into September and October.

So, barring some kind of miracle, I will be chauffeured around by Ray (or trapped in the house), watching TV with a patch, and seeing the world go by in double, at least until September.

Unbelievable 6/26/2017

I started Rituxan treatment (infusions) 2 weeks ago, with the regimen set at one infusion per week for 4 weeks. I had one on the 12th, and one on the 21st. Everything seemed to be moving along. I had minimal reactions to the drug. Then came the call from the Rheumatologist's office: it seems that they had screwed up the billing to Medicare and Medicare at first refused payment. So they were calling to cancel my next treatment until they got a promise of payment. I called their billing office to tell them that I would give them a check for $13K (the list price for the 2 treatments). They will not take it. I called Medicare to find out what the issue was, and was told that the provider has to contact them to find the correct billing code.

This morning, I called Genetech, the manufacturer of Rituxan to find out what, if any, ramifications there might be for changing the dosing schedule from the once a week schedule. They told me that clinical trials for this vasculitis were done based on once a week dosing, and that they did not have any data on anything else.

So, I have no more treatment until the Rheumatologist hears from Medicare. Unbelievable.

Counting the days 6/3/2017

I finally have a start date for chemo: June 12th. Each IV infusion will take 4 hours (the first one may take up to 6 hours) and I'll get 1 every week for 4 weeks. I'm actually counting the days til then, because this will hopefully be the beginning of some kind of remission from this disease. While some symptoms have abated with the prednisone, the vasculitis is progressing, and now the nerves in my right hand are getting numb and unresponsive, to match my left. Yikes! I also look forward to reducing my prednisone dosage. In addition to a bunch of other issues, it keeps me from sleeping more than 4 hours at a time.

On another positive development, in preparation for the infusions, I had a battery of 17 blood tests that showed that my kidney function has continued to improve by over 50% from when I was first diagnosed. Even my anemia seems to be resolving.  And next week I don't have even one doctor's appointment! Woo hoo!

I know better than to wish the days away, but the 12th can't come soon enough!