Up at 5:30 - after a wonderful night listening to a total of 3.5 inches of rain coming in waves. Lots of lightning, but none of it overhead, so the rumble of distant thunder sounded good.

At least the early morning is every other week now, not every week for a couple of months. We splurge on breakfast at McDonalds - Beloved Husband needs a bit more sugar in his system. A couple of times his blood sugar dropped too much. These Wednesdays we prepare a bit more.  He like their bacon/egg/cheese biscuit while I'm a burrito fan.

With the handicapped license plate, we don't have to pay parking at Outpatient even though we're there half a day. Once a month we have to check in, the rest of the month we head for the second floor and let the nurses know we're there early, as usual.  Once there was a huge traffic jam due to a broken street light and we were a bit late.  I'd rather be early.

A quick check of his perma-cath, cleansing, blood taking, flushing then hooking the ports up so the blood will flow out, plasma removed and albumin mixed with what's left to be returned. Amazing to me the size of the plasma bag once it's filled. All of the lines, as well as the plasma, are collected at the end to be burned as hazardous waste. In that bag, with that plasma, are the antibodies that inhibit neuromuscular receptors. Then it's time to rebandage - remove the cath covering, a second flush, rewrapping and we can go on our way. While the body continues to create antibodies that require this to continually be repeated.

Twice those antibodies caused his diaphragm to cease responding to the brain's command to assist in breathing -- a myasthenic crisis. Untreated, the patient cannot breath and basically smothers. Amazingly, there are treatments.  For some, medication is sufficient. For him, it's a minor impediment to a worsening autoimmune disease that cannot be cured.

Sad thing is, there are a lot of these out there. Ones that do not have a celebrity gaining media coverage. Oh, yes, there are organizations requesting funding for research.  In October we hope to benefit from that research through University of Texas Southwestern's medical facilities (prayers requested, please.) It took almost four months to get that appointment, too.

So, while we wait, we make the trip to Fort Worth every week.  Oh yes, we do have to go every week.  The other weeks are for port flushes, the perma-cath has to be cared for. That's about a thirty minute process, not like the full plasmapheresis process which lasts from three to four hours.

Our schedule is pretty much wrapped around these trips. Thanks to all who think of us, pray for us and understand what a lifestyle change this has been.

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