Oh my, what a week it has been. I'll start with Becky. She had an up and down week. Her hepatic encephalopathy (increased ammonia level) was apparently higher than usual early in the week as evidenced by increased shakiness in her hands and her general fogginess and inability to focus her thoughts. That has improved the last couple of days back down to more manageable levels. That allowed her to have lunch and a good visit with some family this week.
At her weekly radiology appointment, she had "only" 6.8 liters of fluid drained. I initially thought they forgot to test a sample of the ascites fluid for infection. It turns out, they did. I had just gotten bad information from Becky. The liver doctor wanted to test the fluid because of elevated white blood cell counts from her most recent blood work. We found out later that the test came back negative.
Even with everything else going on, Brian and I started doing some car shopping this week and we brought one home for Becky to look at it. Even though she can't drive right now, the Durango has almost 225,000 miles on it, and I'm hoping having a new car in the driveway will give her one more thing to look forward to. As incentives go, it takes a "back seat" to spending time with grandkids and other family, but it's something.
As far as doctors and insurance go, that's where the hoop jumping part comes in.
We attempted to get a referral sent to our preferred liver transplant center. After several phone calls and emails to the liver doctor's office, the medical center, and the insurance company, I finally found out that the insurance company doesn't treat transplants the same as other referrals (like the doctor's office would normally do). They have a special program for this (Cigna LifeSOURCE), and in the end that might be a good thing. For now, it means I have to convince the doctor's office to do something different than their normal process and it's been a challenge so far. I will need to call again Monday to see if they have made the required phone call to Cigna LifeSOURCE to open a case for Becky and get the process started. I have created a page on this blog to post more information about the transplant process and living donor search as soon as we have approvals, know that's the path, and have more details.
I also attempted to set up an appointment with the hematologist. That phone call went to a receptionist that has no access to any information about whether or not that referral was received. She just sends a message for another office to call me back when "they have everything they need" - and since I spend most of my day in a closed lab where I cannot carry my cell phone, that will prove to be a challenge.
In the middle of the week, Becky received a text saying she had a new prescription for an antibiotic ready (one that we were not aware was being prescribed). When I called to find out more information, I found out it was sent in by the liver doctor. I'm presuming he was concerned enough about the possible infection to start antibiotics before getting test results, but he never informed us of that. If Becky had not been signed up for text message alerts from the pharmacy, we would not have known.
I haven't heard from the gastroenterologist yet either, so I'll add that to my list of phone calls to make on Monday.
Thank you to everyone that has been praying. We appreciate you!
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