Just a little adventure: Jekyll Island 7/30/2017

Faced with the prospect of a couple of weeks without a doctor's visit or test, we decided to set out on a little RV trip.

Our first stop was Jekyll Island, off the coast of Georgia. The island was developed in the late 19th and early 20th centuries for private vacation homes of wealthy American businessmen and was evacuated during World War II by order of the US government. In 1947 the state of Georgia acquired all the property, for security and preservation.

We weren't prepared for how absolutely scenic the island is. Huge live oaks dominate the island, and line the streets, arching over them. Dripping with spanish moss, they give the island a lovely "southern country" feel. If you didn't know it, you might not think that this is an island off the Atlantic coast.  Even though Jekyll is a state park, because of its unique origins, there are private homes here, most of which are located on the island's interior.  From a conversation with a few of the island residents, we learned that all the land is leased from the state.

We were surprised to discover that the beaches were quite muddy. The water  at the southern end of the island (Glory Beach) was cloudy with sand. And the beach at Great Dunes was fouled with what looked like dirt. When we emerged from the water there, our lower legs were covered in dark brown crud. Yuk!

The bike paths that circle and criss-cross the island look like a great way to explore when the weather is cooler.

The power of personal contact 7/6/2017

I had a regularly scheduled follow-up appointment with the rheumatologist yesterday, which I used to discuss the issue of continued care without Medicare's final decree regarding payment for services. My rheumatolgist doc (RD) told me that there are strict Medicare prohibitions to taking money from Medicare  patients while a claim is being handled, and severe penalties for fraud. We had a good discussion regarding the possibility of having my hematologist take over infusions, and follow-up care. After all was said and done, he agreed to continue rituxan infusions, with the proviso that if, for some reason Medicare denied coverage, he would bill me. (He couldn't have made that decision a week ago???) At any rate, I'm not sure whether my considerable sales skills 😉 convinced him, or whether I just appeared incredibly pathetic, but he agreed to continue infusions this week and next.

I am also elated that my prednisone dosage will be substantially decreased over the next several weeks.

I see an RV trip in our future....

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!

Disappointment--and more waiting 5/26/2017

Today's doctor of choice was the Neuro-Opthalmologist to whom I was referred by the Opthalmologist. My appointment (the soonest I could get) had me arriving at 7:40 a.m., after a drive of slightly more than an hour. No problem.

I had anticipated that this guy would test me and determine that what I needed was fresnel lens glasses (see previous post), prescribe them, and send me on my way. What actually happened is that he wants me to wait a month to see if my eyes improve, at which time, if they haven't, he will prescribe the glasses. It doesn't sound like a big deal, but it sure was to me. Another month of seeing 2 of everything. Another month of having to be driven around by Ray. Another month of watching TV with an eye patch...which I will do, and hone my patience skills. 

19 and Counting... 5/18/2017

Finally went to an Opthalmologist today to address the double vision issue. I see fine out of each eye individually, but when both eyes are open, I see two of everything at a distance. Close up, I see one image with both eyes, so at least I can read. I'd really love to be able to drive, so I'd like to get this cleared up. I had been hoping that vasculitis treatment would take care of the eye issue, but that may not happen. So today I went to a well-regarded opthalmologist to see what could be done.

After having my eyes dilated like a startled owl:

(see the likeness?--This was taken at least 2 hours after the exam...)

bright lights shone directly into my eyeballs, and multiple other tests, I finally met the esteemed doctor who essentially said that I need to see another specialist for a strabismus evaluation. This guy wants to look at the Ophthalmologist's clinical notes before he will agree to see me. If I am worthy, I will get an appointment with him. The probable outcome would be that I would get fresnel prism glasses similar to those Hillary Clinton wears (click to see a larger image):

So, the waiting continues. I'm still waiting to hear from the rheumatologist about timing for chemo. Oh--and the reference to 19 and counting is the number of doctors I have seen since coming to FL, most for the vasculitis issue (one is my dentist, though...)