It has been longer than I intended since my last update, especially since I have some updates. But for those who missed the memo, 3(?) weeks ago (my timescales is all out of whack) David fell and broke 3 metatarsals and the tip of his fibula on his left leg. He has been non-weight bearing ever since. That kinda turned our world upside down and we are still recovering.
We think he has a couple of more weeks before he can start putting weight on his foot again, but we won’t know for sure until his next appointment with his orthopedist this week.
We now have help several days a week to do things like keeping David fed, getting our mail (we live in an area without mail delivery), doing laundry, running errands and the like.
Fortunately, David is able to drive, even if he can’t get very far once he gets anywhere. He got a cool, new-to-us knee scooter on Friday. It is pretty fancy, and even came with a sheepskin cover for his leg to rest on. Hopefully, that expands his range a bit.
As for my updates, I will try to keep some long, drawn out stories as short as possible.
I have been dealing with some obnoxiously uncomfortable symptoms since February. Specifically, I am struggling to retain any of the fluids I drink. The fluids I drink, remain (painfully) in my stomach, making me horribly queasy, until I vent them out of my G tube. Even when I have had nothing to drink, and I close off my G tube, pressure builds up painfully throughout my entire GI tract. And my general pain level is up, even when I am venting.
I have to close off my G tube for an hour every time I take any oral meds. That insures that I don’t immediately vent out my meds. It isn’t perfect solution. At times in the past, I have noticeably vented meds even after having been closed off for an hour. But it is often just (barely) as much as I can stand.
Back in February, my GI ordered a bunch of tests, prescribed a medication that was, after a wait of over a week, denied by my insurance company. Then I was offered an appointment with a nurse practitioner in my GI’s office, for early April.
This particular cluster of symptoms feels like something that I have dealt with before: Small Intestinal Bacterial Overgrowth (SIBO). Both my slow motility and my less-than-perfect pyloric sphincter leave me at high risk for SIBO.
In early April, My GI NP ordered a SIBO test, which my insurance turned down. Rather than then put me on Xifaxan anyway, which is the standard treatment for SIBO, and one that I have responded well to in the past, she put me on an herbal supplement, Atratil.
Atrantil has made a small difference in my pain levels, just around the edges, but it hasn’t solved any of my problems. Through a screw up on Stanford’s part, I ended up with an appointment with a PA in my GI’s office, just a couple of weeks after my appointment with the NP.
The PA took a different approach than her colleague and went ahead and prescribed me the Xifaxan. She confirmed what I had also read in the literature, which is that there is no reliable test for SIBO. She prescribed the Xifaxan based on my previous success with it resolving this cluster of symptoms.
We both agreed, that I would continue the Atrantil after the round of Xifaxan to help reduce the chance of a recurrence of SIBO.
Sounds great, right? Problem solved.
Not so quick.
The insurance company denied the Xifaxan because I hadn’t taken a SIBO test. At least the nurse at Stanford caught that my insurance company had also rejected the SIBO test. Unfortunately, Xifaxan is a very expensive antibiotic, with the generic version running at over $54 a pill.
Stanford helpfully sent my Rx to Canada, where I could get Xifaxan for way, way less money. Unfortunately, The only Canadian manufacturer of Xifaxan shut down, presumably because they couldn’t compete with the incredibly low cost of generics coming out of Asia.
But Canadians have a reputation for being helpful for a reason. The pharmacy placed my order directly with the manufacturer in India to be sent directly to my home. I should expect my meds to arrive in 4-6 weeks.
This is where I started to get nervous.
The number of container ships coming into our ports has already dropped by something like 30%. Fewer orders coming in means it takes longer to fill ships, which may expand that timeline.
Still loving the Canadians though. I was able to buy insurance, which even covers the item if it gets stuck in Customs for too long. Because, say, the workforce in Customs has been slashed, or some such thing. So, I should eventually get my meds. Right?
The saddest part is that even with the insurance and our current tariff rate on India of 26%, the total cost was just a fraction of what the same med costs in the US.
We could, of course, fight the insurance company’s denial, but that will probably take just as long and I am even less sanguine on that route having a positive outcome.
Every medical professional I have spoken to in the last month or so has said that they have seen a spike in insurance denials. And that matches what I am seeing in my gastroparesis groups. Given the chaos at the top, I think insurance companies have figured out that there is no one paying attention to them right now. Even though states regulate insurance, every state is undoubtably scrambling right now as they see federal funding that they had been allocated, disappearing into thin air. They know hat no one is paying attention, so there is no need for them to be on their best behavior.
I am also working very hard not to let my concerns about the impact of the now inevitable shortages to come on my medical supplies. My feed bags come from Peru. The sterile dressing change kits that my nurse uses are assembled in Mexico. I have no idea where my formula comes from. But it is a Nestle product, so I suspect it is not made domestically.
I will spare you the full list of medical supplies that I use on a daily basis. But let me assure you it is enough to make a tubie even queasier, were she to let herself focus on the issue for too long.