Month: March 2025

It seems like forever ago that I first reached out to my GI about an increase in pain and venting. The only way for me to communicate with my GI is via the online portal. There is no office to call. And the portal clearly states that it is for non-emergency issues only and that it can take 48 hours for a response. For anything more emergent, there is the ER.

Because my only option is the portal, I can send a message to my GI on the weekend, understanding of course, that their 48 hours for review only apply Monday through Friday. So on Sunday night 3/16, I sent a message to my GI saying that I was experiencing a lot of pain from pressure and was continuing to vent a lot of fluid.

One of my GI’s nurses responded Tuesday morning 3/18, and from there on, the conversation progressed very quickly. By that afternoon, he said that my GI had recommended Motegrity.

Thursday afternoon 3/20, having not heard anything from CVS, I wrote back to the nurse for an update. The nurse said that he hadn’t heard anything more re: the Motegrity from my GI and she was at a conference, so she was only periodically checking messages.

Friday morning 3/21, I get a message back from the nurse telling me that because the Motegrity requires prior authorization, they have sent the Rx to the Stanford pharmacy to have it get the prior authorization, and then, once approved, it can be sent to my local CVS.

So there went the weekend. I called the Stanford pharmacy on Monday 3/24, and they said that since they had just received the Rx on Friday, so that it was their first chance to submit it to the insurance company. They told me to call back in a couple of days.

I called on Wednesday 3/26, and was told that the prior authorization had been submitted, and it was pending with the insurance. I called back Thursday 3/27, and got the same answer. I called again today (Friday 3/28) and was told that the prior authorization had been submitted on Tuesday 3/25, not Monday as I had expected. The insurance company has 24-72 hours to respond to prior authorization requests. I was told that they should have an answer back from my insurance sometime next week. 🙄

To sum up, It has been more than a week since my GI recommended a medication that may help with my pain and venting. Due to a completely lackadaisical timeline, I am still without said medication, and will be until sometime next week.

The consensus seems to be that healthcare is just going to get worse in this country, so maybe I should be appreciating that I am at least getting healthcare?

The worst part is that we don’t even know if the medication is going to work. I was on it before, very early on, and it worked for a while and then it stopped. But that was before the tube and before I understood much of anything. Back then, we were still trying to figure out what was going on and the primary goal was managing the horrific nausea. Now we are asking it to do something else (I think). Anyway, we will just have to see how things work out once I finally get the med in my hot little hands.

If you recall from my last post, it was an exceedingly close call, but I did have my gastric emptying study on March 19th. For the test, I had to eat two irradiated egg whites with two pieces of toast (I was told that it was most important to get the eggs in. Eating the toast was preferred, but I could skip it if I needed to). I managed to get in the eggs and half of a piece of toast.

Then every hour they had me stand in front of a machine that passively read the radiated material as dots of light on a monochrome screen. Over the course of the test, I could see that there was some movement, but it was clear to me that I was not going to be winning any motility awards in the near future.

When I got the results, the gastric emptying study showed–trumpets please 🎺🎺–severely delayed gastric emptying. Which is the same conclusion reached by my Smart Pill test back in June of 2022.

I still don’t know why my GI asked for the test. I do have an appointment with one of her NPs on April 8th. Hopefully, I will have had a chance to see if the Motegrity is doing anything by then. In anticipation of this visit, I have started a symptom diary to see if we can find any meaningful data as to why I can sometimes retain fluids and other times vent them out.

In other news, I am loving the home hydration. It is keeping me comfortable until we can figure out what us going on. It does trap me in a chair for about an hour and 45 minutes, but I don’t mind at all when we time the infusions around Spring Training Red Sox games. Now that the season has started and we are looking at more night games, we may need to revisit that. If we infuse me too late in the day, it will end up making me need to pee in the middle of the night. And trust me, getting up in the dark while managing two sets of tubes can get hairy. So we just try to avoid that if possible.

One last note. I am hoping I may have jinxed myself into getting my PICC line removed. For literally MONTHS, I have been putting off buying a PICC line cover rather than just using the bandnet that the pharmacy sends because we were always “so close” to getting the PICC line removed that it wouldn’t be worth it. It is important to note here that PICC line covers aren’t terribly expensive. It was the principal of the matter, not the cost that was holding me back.

This week I finally realized that the answer to getting all of this resolved was to actually buy a PICC line cover and then based on my own logic, I would no longer need a PICC line. I even doubled down and bought two PICC line covers, each a slightly different style.

Thus far, I have only used one (like the bandnet, PICC line covers are generally swapped out weekly) and like the bandnet, it slips down my arm a bit, so I have to tug it back into place from time to time. But it doesn’t roll down like the bandnet does, which makes it way more comfortable. Do I now regret my own stubbornness? Yes, I do. But I remain hopeful that I have jinxed myself into no longer needing a PICC line in the foreseeable future. Of course, that is exactly what we have been saying all along.

Literally, seconds after I published my latest blog post, I got an email saying that the gastric emptying study is approved! Tomorrow morning, I will eat my radioactive eggs and hopefully we might get some actual answers.

There is a lot going on and I have some news to share, but I thought I would start with something that is going right. I finally got music back.

It has been many months since I have been able to listen to music. Even my most happy, comforting music was too much for me to bear for way too long. But, something clicked back into place when my brother visited and we watched Wicked together.

It didn’t happen right away, but when Ms. Galinda/Glinda herself, Kristen Chenoweth, updated her “For the Girls” playlist on Spotify, I actually sat up and took notice. This is her annual International Woman’s Day playlist. It starts with a duet between Kristen Chenoweth and Ariana Grande singing “You Don’t Own Me.” That was it. That was all it took for me to get my music back.

Since then, I have done deep dives into Cynthia Erivo and Chappell Roan and enjoyed myself immensely. Which is good, because I have needed something beautiful to help offset the horrors happening in the world right now.

So for the news part of the show. I am off TPN (hold applause).

Back in August (remember August? Before the shitshow came to town in DC?) I was only supposed to be on TPN for a couple of weeks until I could resume enteral feeding. Well, here I am 7 months later, off TPN.

So why are we holding applause? Because, I still have to keep my PICC line for hydration. While TPN itself can be hard on the liver and kidneys, it is not the real danger that kept my GI from being willing to manage it for me. No, the issue is the risk of infection because the PICC line is a route from the outside world straight to your heart. Once I get the PICC line out, I will be holding up a big applause sign, believe me.

The reason I need to keep my PICC like is that I need supplemental hydration because I am still venting copiously. And it has been going on long enough that I am beginning to have circular conversations with my GI. When this first started in early February, she sent me for an abdominal x-ray. Since then I have had a CT for the same issue. Both clear, no action taken. Still venting copiously.

Today my GI told me to get another x-ray for the same set of complaints. This time I pushed back. If I am going to suffer the misery of the drive to and from the hospital for an x-ray, I want to know what they will be looking for that is not in my existent imaging.

I will admit that I am being super cranky because my gastric imaging test that was scheduled for tomorrow, in preparation for which I have been off my motility meds since yesterday morning, is having to get rescheduled because we are still waiting for approval from the insurance company.

We deliberately scheduled the procedure far enough out so that we would have insurance approval in time. But yesterday, I received a fax from the insurance company –yes, a fax, complete with fax cover sheet–in my email asking for more information. Except that the information they were requesting was already on the paperwork that had been submitted.

When we pointed that out to the insurance company, they agreed that yes, they did indeed have the information that they were asking for, but that they had not yet begun their deliberation process because the submission was incomplete. In other words, who knows when we will get an answer, but it is incredibly unlikely that it will be before tomorrow morning. Thus the rescheduling.

I do admit to feeling like I am racing a ticking clock. I have no idea what is going to happen to Stanford once the dust settles around cuts to the NIH. Those are going to cut institutions like Stanford to their core and I am terrified at what that is going to mean when it comes to access for care.

And that brings me right back to my music. That will keep me adequately distracted for a little bit. Maybe in that window, I will finally learn how to retain my fluids, get rid of my PICC line and get back to spinning. Or monkeys might fly out of my butt.