Eva's Gastroparedic Adventure

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.

I think an octopus must have moved into our attic because the shoes keep dropping.

When last heard from, things were looking up. I had gone a few nights without venting overnight and we thought the worst was over. That lasted four days.

Now, nothing is staying in my stomach, not even fluids. Everything is venting out. Last night I drank a cup of peppermint tea. 10-15 minutes after I finished the tea, I closed off my vent bag for a miserable hour and a half after taking my meds. It felt like I was wearing a very tight corset, only inside my body. When I finally unclipped, David and I watched, eyes agog, as my vent bag rapidly filled with the tea.

Obviously, hydration is a concern. I get most of my hydration from my enteral feed, but that isn’t quite enough. Sunday night I did my TPN, so that was an extra liter of fluids that carried me through Monday. Yesterday, we went to my PCP’s office and got two liters of fluids infused. Tomorrow, I am getting bloodwork done away from TPN to assess my hydration level and we will go from there.

My GI has ordered a gastric emptying study for me to be done at Stanford. This is different than the Smart Pill test I had done back in June of 2022 that led to my official diagnosis. This will involve me eating a standardized meal of two mildly radioactive eggs and two pieces of toast. Then they check over the course of 4 hours to see what percentage of the radioactive eggs have left the stomach. She didn’t share her rationale for ordering the study nor do we know how long it will take to get me on the schedule. But thanks to Damaris and Drew, we think we may finally have a handle on the insurance hurdles we are likely to face.

However, and this is a huge however, that all depends on the ACA not being dismantled and us being able to retain our health insurance. Things are really scary out there right now.

David and I share a theory that the issue isn’t really my stomach as much as my small intestines. That the reason that the liquid isn’t moving through my gut is because my small intestines are also paralyzed. This theory is backed up by a barium test I took before my diagnosis back in 2022 that showed that thick liquids moved through my stomach just fine. But backed up once it hit my small intestines. And that barium was still in my guts two weeks later when I went for a CT scan to rule other things out.

But as the head of enteral feeding at NYU/Langone told us, nobody studies the small intestines because they are boring. And there is nothing that can be done for them. Thus it makes perfect sense that that would be the organ than would truly conk out on me.

Gratefully, I continue to be able to tolerate my enteral feeding, and I am now up to 50mls/hour, which it turns out, is my full feed on this formula. The 54mls/hour was established when I was on a different formula in larger containers.

The DME that send me my TPN and supplies is now supplying my enteral supplies too. I switched, in large part because they had me on an obsolete pump and were therefore sending 500 ml rather than 1liter bags which were no longer available. My new supplier has me on a new pump, but now they can’t get bags for the pump. They sent me 15 bags and told me to wash them out and use them a second time. David and I were unsure as to how sanitary that would be, so I turned to my tubie network and now we have 60 bags enroute to us. But, it is a nationwide issue, so I find myself hoping that whatever is causing the backlog will be resolved soon.

I don’t know where the bags are actually made, but they are assembled in Costa Rica. I now find myself monitoring the deteriorating relationship between the US and almost every other nation wondering what it will mean vis a vie my medical supplies.

I am here to tell you that, by some miracle of fate, I can report that by yesterday afternoon, we both had heat and hot water (and David and I had both had an opportunity to shower) and I had a new tube in place.

The propane issue was one solely of communication. It turns out that the propane company was indeed working with estimates (although we haven’t been here through a full winter yet, so they were not estimates based on our own previous usage behavior) and that is why our propane tank was empty despite being on the automatic refill plan.

It also turns out that because we are on the auto refill plan, the propane company would have come out Sunday and put 10 gallons in the tank, restarted our appliances and then come back Monday to do a complete fill. But their outgoing message was not at all clear on that point. And we only found out when I finally called the emergency number again later Sunday evening and spoke to the answering service. By then it was almost dark and we live up a big hill and it would not have been safe, in my estimation, to make them do the emergency fill. We had space heaters and could wait until Monday morning for them to come.

We had asked the visiting nurse that comes on Monday to make us her first appointment at 9am because we knew there was no chance in hell that we would have heard from the IR doctor. The propane folks were coming between 8:30am and 9am, what could possibly go wrong?

Of course, everyone arrived at once. While David ran around the house with the propane guy, restarting the heater, hot water heater and stove and the smell of propane everywhere (we were assured that it was safe and not flammable) the nurse and I sat in the living room doing our usual Monday morning routine. Not long after she started taking my vitals, I got a call from the IR doc telling me to come to the hospital at 1:30 for a tube swap.

But–you knew there had to be a but, right?–the other shoe had to inevitably drop, right? When we arrived at 1:30, I learned that the appointment had been scheduled as a G tube removal. I tried to explain to the woman who checked me in that I actually there for a G-J tube swap, but she just told me that I should tell the nurse when they brought me in for the procedure.

David and I sat in the waiting room until my name gets called. As the nurse and I are walking toward a room for me, I explain the issue. He is flummoxed. A G tube removal can be done pretty much anywhere. Just deflate the balloon and pull. In fact, he brought me into a large storage room with a gurney and computer smack in the middle of the room. A fine place to pull a G tube.

Inserting a G-J tube is a whole different matter. It requires fluoroscopy machines that allow the Interventional Radiologists to visualize the anatomy and thread in the J tube through the stomach and into the jejunum. Unfortunately for me, there was already another patient on the fluoroscopy table.

The nurse left me in the storage room and went to go check the order and to see if they even had a G-J tube in stock. While he was gone, two staff members wandered into the room I was waiting in. While I just sat there on a gurney, they looked at me for a moment and then went back to their conversation, did what they needed to do, and left. Clearly, they had expected this to be a quick in and out procedure.

After a short while, the nurse returned and confirmed that the order was indeed for a G-J tube swap and he had no idea why or how it had been scheduled as a G tube removal. He confirmed that they had a G-J tube in stock and that the doctor was going to be able to fit me in right after he finished with the current patient. The nurse sent me back into the waiting room so I could hang out with David while the doctor finished up.

After about 15-20 minutes, the nurse returned and wheeled me into IR and voila! I had a new tube. Well, it’s not quite that easy.

When my tube is swapped endoscopically, I am put under light anesthesia. I just wake up after a nice nap and it really is voila! When the tube is swapped by IR, the doctor is going in through my stoma. I get some local lidocaine, but other than that, I am wide awake. And it can get quite painful internally as the doctor makes several attempts using guide wires to locate my jejunum and guide the new tube in. And there was a nurse behind my head who dutifully asked me my pain level at several intervals. But even when it got bad, she said nothing, nobody did anything.

I have encountered it every time I have been in a hospital setting. I am asked my pain level. It is dutifully recorded and nothing more is said. More times than not, no medication is offered. I truly cannot understand why they bother to ask if they have no intention of doing anything about it.

Regardless, it was amazing to get home from the hospital yesterday and collapse on the couch in our warm house. And I was thrilled when I was able to pick up my tube feeding exactly where I left off. I will take one more day at 49ml / hour because I remain a bit sore from yesterday. But then up to 50ml/ hour. Getting close.

Today has not been a Good Day.

First, we woke up to discover that our heat had not turned on. David went to go check the propane tank and discovered that it was empty. We are on an automatic refill plan so this should never happen. But it did.

I called the propane company and they don’t do emergency fill appointments. I checked their app and discovered that it showed our tank at 45%. No wonder it had not been refilled. I will call them bright and early at 8am and try to arrange a delivery.

Meanwhile no heat or hot water. But we do have space heaters, sweaters, wool socks and blankets. And an electric kettle for all the tea we can drink. And most importantly, we live in California. This is not at all like when we lost heat in Astoria (NYC bans space heaters). This is a nuisance. Nothing more.

It was the second event that really spiraled the day to being irredeamable. My J tube flipped into my stomach again. This time, it did it dramatically with maximum explosive effort, spraying formula all over my clothes. Twice. 

I spoke with my doctor and we agreed that it does not make sense for me to go to the ER today. They might not have anyone on in Interventional Radiology, which would mean either being sent home to come back Monday, or an admission. Plus, tonight is a TPN night, so I will be getting nutrition and hydration regardless.

Instead, she is going to call the doctor who placed this tube, first thing in the morning and see about getting me on his schedule ASAP. And if necessary, I now have adequate fat reserves that provide me with the resilience to skip a day or two of nutrition if necessary. I just need to be extra cautious to monitor my hydration.

As it so happens, I have an appointment with my GI NP on Wednesday morning. It would be perfectly ironic if I had to reschedule this hard to get appointment because of a tube swap. But that is getting ahead of ourselves. Hopefully, this will get addressed Monday or Tuesday and all will be well again.

On the plus side, I get to wear my dinosaur onesie because I am not attached to any tubes. And it is nice and warm and cozy. Especially with fluffy, wool socks on. And underneath, I am wearing my “It suck to be me” T-shirt from Avenue Q. It felt appropriate.

I am having a tough nausea day, I can’t even with the world right now, but I am also feeling positively giddy because I am now down to TPN only 3 days a week!!!!

My enteral feed is currently at 48 mls/hour, with a goal of 54 mls/hour. I can only increase my speed by 1 ml/hour every 3 days, and it is a slog. I had been expecting my RD to reduce my TPN to 4 days a week, so getting that extra bonus day off was just a very much needed win.

That’s really all that I came her to say. But I feel like I owe my readers something more.

Last week was excitedly (and a bit exhaustingly) busy. We celebrated David’s birthday with his aunt, uncle and cousins. The following day, we finally made it to the coast.

Healthy Eva would never have tolerated living on the west coast this long without having at least once going out to put her feet in the ocean. But this semi-healthy Eva put her feet in the ocean last week and it was amazing.

At first, I was confused because the water was so cold. The temperature of the water was more reminiscent of the Oregon coast. Then David reminded me that it is the middle of winter. Oops.

The downside of our coastal adventure was a reminder of just how miserable car rides are for me. I had really hoped for a massive improvement once we got the C.diff straightened out. No such luck. But I have not given up all hope.

Ramping up my enteral feeding is an uncomfortable process. This time has been easier than previous times, but it is still painful. Perhaps once I have gotten comfortable at my goal speed, my experience of riding in a car will improve.

I didn’t have too much time to dwell on that because this past weekend, a much beloved friend and her teenage son came to visit. We hadn’t seem them in 5 years, and it was lovely how we were able to just pick up as if no time had passed.

This week is just shaping up to be weird. But given the circumstances, that feel about right.

I have been diligently working my way to moving back entirely to enteral feeding. Yesterday, I reached 41mls/hour. The goal is 54mls per hour. I attribute my steady progress to better pain management. Last time I had to slowly increase the speed of my feed the process was much bumpier. But, the resources provided by Stanford’s pain management clinic have been incredibly beneficial in helping me thus far. Being appropriately medicated (without opiates, which I cannot take because they slow motility) is helpful, but the pain management and relaxation techniques that they have taught me should get their fair share of credit as well.

All that effort has paid off and starting next week, I am going down to TPN just 5 days a week. The challenge with reducing my TPN at this point is not about the nutrition. That is relatively easy to manage. The challenge has been in the hydration I normally get from my TPN, which I have to make up for either orally or enterally in its absence.

These past few weeks of being on TPN 6 days a week, I have found myself mildly dehydrated when I wake up after a night without TPN. For clarity, my TPN runs for 12 hours, from 9pm to 9am. I do a flush of 100mls of water every day at 7am. I am working on increasing that to 120mls, but that is the maximum volume for a flush. So that won’t help much.

Recently, I learned that I am able to tolerate a much higher volume of oral hydration if the liquid is hot. Cold and room temperature fluids cause me pain, making it hard for me to increase my intake by much. But, I can drink an adequate amount of fluid to offset the loss of even 5 days a week of TPN if I do it by drinking decaffeinated and herbal teas. I just need to be diligent about it.

In other news, I finally got to see the pain physical therapist at Stanford. My original appointment had been on Halloween, but it was cancelled because the therapist was sick. Unfortunately, we only heard about the cancellation once we were almost to the appointment. An hour and a half away without much traffic.

Anyhoo, the appointment went differently than it would have when I was still in the fog of pain. I have been doing some standing yoga poses and stretches daily since I have been able to do so comfortably. The PT was impressed with my knowledge of yoga poses and we discussed a couple of more that we could safely add now. We also discussed some gentle core poses on my hands and knees that I could add in once I get my PICC line removed.

We also discussed increasing my walking, but she wanted me to do more flat walking, like on our treadmill. More on that in a bit. So far, All of my walking has been on hills because you cannot leave my house and not walk on a hill. David and I have been slowly exploring the hiking trail/fire road that starts right on our street. Each time we have walked it, I have been able to go a little further. It is my intention to continue exploring and slowly climbing that hill. But, I also fully intend to add some walking on the treadmill.

We have a lovely treadmill, that is unfortunately missing the part where you rest your hands and it checks your heart rate. The movers just somehow lost that piece. We are now just waiting on the insurance claim for it. But, today we confirmed that it works even without that part. So I don’t need to wait to get started.

This is all great news, and I am happy to be able to share it. But please keep in mind that I still have a chronic disease. I will have good days and bad days. Most importantly, I have learned that just because things are looking up, it doesn’t mean that they can’t all come tumbling down again. Like they have before.

What I have learned and have to continue to reinforce for myself, is that I need to do the things I want to do when I can. And be kind and understanding to myself when I can’t. Which means that for now, I am going to enjoy my ability to move my body without (or with only minimal) pain. And I am going to listen to my body’s cues and stop when I first hear the alarm bells. And not push myself too far.