My Kafka-esque Existence

This is David writing for Eva again. 

Much remains the same as the last time I posted. Eva is still in pain and nauseated. We have some new symptoms (diarrhea). We have the same feeding tube Eva has had since early August. We have blown past two appointments for getting it swapped out without getting the necessary approval from the insurance company.

Just a reminder: Eva has been in a great deal of pain since she had this tube put in on August 1, and has been unable to use it for feeding because of the pain. Instead she is now on TPN (IV nutrition). We believe the pain is being caused by this tube or how it was placed given that the pain and the placement happened at the same time. None of the imaging has shown any reason this should be true, but it also hasn’t ruled it out. 

About 6 weeks ago the GI authorized a tube swap for Eva (though this was not well communicated). It was originally scheduled for Second Day Rosh Hashanah (October 4). But first, as with everything in today’s medical system, we needed clearance from the insurer. 

Stanford is out of network, but there is a magic form that lets them perform the procedure as though they were in network. But despite a heroic push by our complex care coordinator, this form could not be completed by October 4th. The night of October 3, the procedure was pushed, rescheduled for October 24 (“hey! That’s tomorrow,” I hear you thinking). For the last three weeks our complex care coordinator has been chasing around with Stanford and Blue Shield, trying to establish where the form was and whether it had been approved. Stanford said it had been submitted. Blue Shield said they’d never seen it. Stanford couldn’t produce a copy for our complex care coordinator to show Blue Shield and push through the bureaucracy. This has been the subject of daily pushing by us and our complex care coordinator for at least 10 days.

Today, the secretary of the GI practice at Stanford sent a note through the patient portal saying, essentially, “form? What form? We never filled out a form.” Procedure was canceled again.

Eva remains in debilitating pain. The form seems not to exist yet. We have to start over from the beginning. And now Blue Shield says it is taking them a week to enter forms into their system for review, so plan extra time for that. 

To say we are frustrated (and that Eva is so far beyond frustrated that I don’t have words to express it), would be rather like a theologian describing God as “good” (that’s a pretty funny line for those who have studied medieval theology–if not, well, have you considered going to seminary so you get the reference? It doesn’t take more than five or six years…). Yes, we are exploring other options (can this be done truly in-network? To what degree is this a commodity procedure and to what degree does specialization matter?). Yes, the complex care coordinator is part of the frustrated we. I believe Kafka was mentioned today.

And so, we are restarting this process again tomorrow. Girding ourselves once more to battle bureaucracies that specialize in making it difficult to speak to a human (again, so grateful that the complex care coordinator does much of that navigation for us). Eva remains in pain and nauseated. And we continue to float on in winds and tides of large institutions, subject to their whims and arbitrary decisions. 

The Post Hospital Chronicles

This is again David, writing on Eva’s behalf. 

We get Eva home from the hospital on Aug 21. She is deeply relieved to be home, but still in significant pain and with tons of nausea. She can’t use her feeding tube, and she is layering gabapentin and Tylenol and a bunch of other meds. She is spending most of the day in bed. 

Within a day, I’ve taken over hooking and unhooking Eva from TPN (IV nutrition). It’s a process, and it’s a fussy process. The goal is to keep anything non-sterile from entering Eva’s PICC line. There is a lot of scrubbing things with alcohol wipes. There is a lot of precision taking poking needles into vials and removing vitamins. And it is more concentration and more standing than Eva can do. 

Things aren’t getting better for Eva, and the doctors keep upping the gabapentin. Eva keeps taking increasing amounts of gabapentin because she is in pain and the doctors tell her to. 

We go see a GI NP at Stanford about next steps. She prescribes the fluoroscopy and a visit to the pain clinic. We are able to schedule both appointments for a week out on Sept 11. We return home. Eva continues to feel well and truly awful. Pain such that she can’t concentrate on anything. Wooziness (like, she stands up and then has to sit down on the floor because she is afraid she will fall down). I begin to notice that while Eva feels better an hour or so after she takes Tylenol, the same doesn’t seem to be true of the gabapentin. I begin to wonder if the gabapentin is doing anything. 

Eva makes it through an excruciating week before we head down to Stanford again for the next set of appointments. The pain clinic doctor is pretty great. She switches Eva from gabapentin to pregabalin (Lyrica). She has next steps in mind if this doesn’t adequately fix things. She refers Eva to a pain psychologist who will give her methods to help control the pain (that appointment will happen sometime in October). She refers Eva to a pain physical therapist, who will help Eva tolerate contact pain on her abdomen (maybe?). 

We finish with her and it’s 11:00 AM. The fluoroscopy isn’t until 4:00 PM. Our home is 1.5 to 2 hours from Stanford Medical Centers. The good news is that there is a lovely courtyard with some padded chairs where we hang out until Eva’s TPN finishes, I disconnect her, and then we go off and find some lunch for me. We arrive at the fluoroscopy appointment outrageously early (2:45), which turns out okay because there is an insurance issue that takes 45 minutes for the check-in desk to resolve. 

The fluoroscopy reveals nothing abnormal. There’s something unusual, but the radiologist can’t quite put her finger on it. It does cause Eva a whole bunch of pain because it involves flushing her tube with 120 ml of dye and she can’t even tolerate 30 ml of water.

We head home, Eva in excruciating pain and nausea. 

The good news is that the pregabalin is working way better than the gabapentin. Eva is able to concentrate for brief periods. She is also venting a fair amount (which isn’t great for her hydration, but so far her labs seem okay).

Labs. A nurse shows up twice a week to change the dressing on Eva’s PICC line and change the extensions (little tubes that mean I’m not trying to do everything within an inch of Eva’s arm, but rather within a foot when I’m setting up the TPN or disconnecting it). 

But Eva is still in a lot of pain, and there’s a lot of nausea.  

We aren’t sure at the moment whether the GI has weighed in on next steps. She isn’t particularly communicative with either us or her staff. Eva thinks the current tube or the clips holding it in place or something are causing jejunal pain. We are hoping someone will decide to either pull the tube so the jejunum can heal or swap it or something. But in the mean time we wait. 

And Eva is in pain and nauseated. 

[This is Eva adding just one thing. I did get a response to my inquiries through the portal from a patient care coordinator to “Please continue to work with pain management to get the pain under control. Continue TPN for now. Follow with clinical nutrition. Once pain under better control can retry enteral feedings.” My next appointment with pain management is mid-October.]

The Hospital Chronicles

This is David writing on behalf of Eva who doesn’t really have the spoons for writing at the moment. 

If you’ve been following along on Facebook, most of this post is likely to be review, so feel free to skip (unless you want to review the hospital intensive side of things).

On July 18th, Eva went to Stanford to get her tube swapped out. This is a relatively routine procedure, though it does involve an endoscopy, and therefore sedation. But it’s something that should happen once or twice a year. The swap went fine, and we took off for a family vacation in western Massachusetts on July 25th. By July 26th, it was clear there was something wrong with the tube.

Eva was venting something that looked an awful lot like her formula through her G-tube (gastric-tube) (note, the formula goes in through the J-tube (jejunum-tube) which is downstream of the stomach (gastric)–nothing is supposed to flow in that direction). This suggests that the tube “flipped”. A “flipped” GJ-tube means that the J portion has curled up and is no longer in the jejunum (part of the small intestine) but is now in the stomach. The test for this is to squirt blue Gatorade into the J tube, if it comes out the G-tube, your tube is flipped. At a lovely Inn in Western Massachusetts, there was blue effluvia coming out of Eva’s G-tube on a Saturday afternoon.

The remedy for a flipped tube is replacement, which requires endoscopy and somewhat specialized GIs to do it. It’s not something most hospitals do on weekends. So bright and early Monday morning, we go into the emergency room in Springfield Mass., (the teaching hospital for UMass Amherst), and spend the day shuttling around between tests, an attempt to fix or replace the tube by interventional radiology (IR) (apparently the topography of Eva’s stoma, stomach and small intestine don’t allow for IR to do it), and finally, an endoscopy and a replaced tube. The GI commented that he had used to two clips, since the tube had been originally secured by one stitch. We go back to vacation with the rest of the family, Eva begins to feed for the first time in two days, and everything is fine. Until Wednesday, when things feel “wrong” again.

Eva is venting something that looks like formula again. And there is once again blue effluvia coming out of Eva’s G-tube. And so, we go back to the hospital. This time, they can’t get to it the same day (we didn’t arrive until 2:00 PM, so they admit Eva so they can slip her in whenever they get a chance. The following afternoon, they swap the tube again, and the GI tells me they used three clips to secure it. 

Eva is feeling pretty awful by this point, but she grits her teeth through the remaining few days of the trip until we fly back on Monday. By Wednesday, she is unable to feed at more than 15 ml/hour (her standard is 50), and we are seeing an NP at Stanford. The NP thinks Eva’s tube is flipped, and sends us to the ER for x-ray and maybe a fluoroscopy (we are dubious about the flipped tube part of things, but she’s seen more tubes than we have, so we go along with it). They do a CT scan, the tube isn’t flipped. They don’t know what to do for us, and send us home.

Thursday we touch base with our Primary Care Provider (PCP), and she suggests we come in Friday morning for IV hydration. We come in, Eva gets two liters of IV solution over 4 hours, and we all conclude that there is no way to keep Eva hydrated over the weekend, and besides bowel rest might be a good idea and fix everything. And the only way bowel rest works is in the hospital. So, with the consent of Eva’s GI at Stanford, we check her in to Novato Community Hospital for a few days. It is a small hospital, but we are only there for Eva to get IV hydration and maybe some pain management for a few days. Except . . . feeding through the tube isn’t getting easier, it’s getting harder. Eva can’t even tolerate 5 ml/hour (10% of what she had been getting).

By Wednesday of the following week, we are all clear that the bowel rest isn’t fixing anything quickly, and the IV hydration she is getting with some sugar in it is not a longer term solution. TPN (total parenteral nutrition) is the obvious answer. This is IV nutrition. This is a bigger deal because it requires a central line, in this case a PICC line. This is essentially a tube that runs inside a vein from your arm to a central vein right near the heart. It’s a little bit of a big deal because it is a route for things (like infections) to travel directly from outside the body to the heart. The docs at the hospital try to get ahold of Eva’s GI for a day and a half, but aren’t getting any response, and go ahead and schedule the PICC placement. It is placed, and Eva is getting real nutrition again.

We are still playing whack-a-mole with pain and nausea, but nutrition and hydration have been dealt with. Eva’s GI gets back to the hospitalists, and says TPN is a terrible idea and don’t do it–it always leads to infection. Sigh. We have actually heard this from another GI, and asking around, other people have heard it from their GIs. We don’t know where the GIs get their information, because it’s simply not true. When you tell other medical staff what the GIs said they look at you like you’re insane, because people can live on TPN for years without problems, and most of their patients have no problems. I can’t explain why GIs have such a different view of TPN than everyone else, but it seems to be a thing.

Over the course of most of another week, Eva is getting stabler. Her labs are looking more normal. By Monday the hospital is pretty ready to let us go. Except . . . to be sent home with TPN requires training. After all, while not as dangerous as the GIs seem to think, it is a route for infection, and does require a fair amount of caution and care. And a visit from a home health nurse your first day home. Who won’t be available until Saturday. 

Eva has been in the hospital for 10 days now. Wearing a mask all the time, except when she is sleeping when she is wearing a CPAP mask. She is so over this and so ready to go home. After a day, they are able to find a nurse who can come to the house on Thursday, so they plan for a Wednesday discharge. This means we get the first training session on Tuesday and the second on Wednesday. And Wednesday afternoon, August 21,  they let us go home. 

Which starts an entirely new stage of this saga, which I will relate in the next post. 

Hovering Shoes

The tube swap went very well, and it is very nice to have a clear, unclogged, cooperative tube once again. Jury is still out on the botox procedure. The goal is that by freezing my pyloris muscle open, my stomach would empty faster and that would alleviate my nausea. The doctor who performed the procedure said that my pyloris was already pretty open, so he wasn’t sure how well the intervention would work. My body is still working through the sleep deprivation, the anesthesia and the adrenaline of the past few days, so I really can’t tell anything yet.

The real test is going to come this week when I fly East for 10 a 10 day gathering of David’s extended family. Travel is incredibly hard on me. I find driving to be the worst, as my incredibly sensitive abdomen absorbs each bump and curve I feel a wave of discomfort and nausea. Comparatively, flying is nice and smooth. But, navigating the airport and TSA stress is simply exhausting.

Accordingly, if the botox can tamp down my nausea through a trip that will involve hours of driving on both ends, with a long flight in the middle, I will call it an absolute success. Only time will tell.

Travel is not what is occupying my mind these days. I am reserving my anxiety for what the company that supplies my formula and feeding supplies is not telling me. For almost a year now, they have been citing supply issues and periodically sending me feed bags for a different pump. They are theoretically fully compatible with my pump, but in my experience, they have been associated with some anomalous pump behavior.

This month the supply company sent me 500ml bags instead of my usual 1.000ml bag. These bags are for my pump, but require that I add formula in stages, rather than setting up a feed all at once. Not a huge deal on its own. Just a bother and another thing to remember to do throughout my day. A day that is already bound my medication times, flushing my tube 5 times a day and now an extension of my feed process. All of these little details and requirements, compounded with my varying levels of pain and nausea do really make it hard to live one’s life.

I called the supply company about sending me the wrong bags and they gave me the same supply chain issue line. I did a little research in my tubie group and it seems that the company that makes my pump is ceasing all support for the pump in September 2024.

The company that makes my pump does have a brand new pump that is replacing the model I have now. Some patients have received them. Just so far, no one who has the same supply company that I have. The supply company that is clearly divesting itself of all of their old stock for my current pump. It is their lack of communication that is really concerning me. It makes me wonder whether they are planning on getting out of the enteral feeding business altogether an \d just dumping their patients rather than making a capital investment in new pumps.

This company was generally well staffed and supportive when I first got my tube in November of 2022. Since then they have made massive cuts to their enteral feeding department. I no longer have a dietician than tracks me. My only communication with them is now a single monthly email asking if I am ready for my supplies to be sent. I don’t even get a confirmation after I reply. Unless you count the automated shipping information email which usually comes after my supplies arrive.

This is truly a terrifying time to be so dependent on our fragmented medical system. I see no profit motive in feeding folks like me. Given the capitalism on overdrive state of the world, I just can’t help but wonder how long it will be before I get fully dropped between the cracks.

A quick update

I happened to have my computer out to pay bills (a rarity these days, since I can usually just do that on my iPad) so I decided to do a quick update too.

My tube change and botox shot are now scheduled for this coming Thursday. I am very much looking forward to this, despite our 5:30am arrival time because my tube is most definitely due for a change. And if all goes well, I should be feeling better pretty quickly.

My hope is that the botox helps make drinking a little more comfortable. It has been very difficult keeping myself adequately hydrated when every sip feels like a lead balloon being dropped in my gut, followed by a wave of nausea. But the botox should help my stomach empty more quickly and I am hoping that includes liquids.

This is already a busy week of misc. medical appointments including an appointment with the anesthesiologist and getting our calcium score tests because aging is fun.

I also have my appointment at the Stanford pain clinic scheduled for August. I am meeting with a GI specialist who should be up to date on the latest gut brain research. In other words, exactly the type of specialist that I was looking for to help me with the issue of my brain misinterpreting gut motility as pain.

A Medical Update, for a change

After months of waiting (Mary got this appointment for me before we moved to California, back in March), I finally got to see my new GI yesterday. She is a part of Stanford’s Motility Center, which means I am no longer seeing a lone specialist. This makes a significant difference for the patient experience.

The most important distinction, for me, is that she sees a disproportionate number of idiopathic patients. If you recall, for most patients with gastroparesis, it is a complication of diabetes. The vast majority of the research on gastroparesis is therefore on patients with diabetes. The data is pretty clear that the few interventions offered for gastroparesis don’t have any significant impact on idiopathic patients like me.

While there are no new interventions that my new doctor can offer, she was able to offer some more insight into the few available options. For example, Every one of the specialists I have seen has dismissed botoxing the pyloris muscle in my stomach. This is the muscle that releases food from your stomach into your small intestine.

Gastroparesis is measured by the time it takes the stomach to empty of food. Paralyzing the pyloris muscle can speed up the time it takes for the stomach to empty. However, the data shows that this intervention is primarily effective in patients with diabetes and has a pretty lousy success rate for patients with idiopathic gastroparesis. That combined with the severity of my issue (even if we cut my current transit time of 21.5 hours in half, I still have severe gastroparesis because the normal transit time of food in the stomach is 4 hours).

I was a little surprised when my new doctor suggested trying botox, but she said that she has seen improvement in symptoms of nausea in about 50% of her idiopathic patients. That was news to me.

Even better, she was able to set me up so I can just get the botox injection when I get my tube swapped out, which is something that we are now in the process of scheduling. Hopefully, it will happen soon (my new doctor marked the scheduling as urgent) because my tube is really ready to be swapped.

While I was there, we also did a little med tweaking because one of my nausea meds was no longer working as well as it had been.

My doctor is that is clear about how over-scheduled she is, so she has a nurse practitioner that she works with hand in hand. The NP came to my first appointment so that she is completely up to speed. I will alternate seeing the doctor and the NP every 3 months. My doctor also has a nurse on her team who handles things like formula orders. For the first time since getting sick, I feel like I am in stable, competent care.

Rolling, rolling, rolling

The UTI has been resolved and I feel somewhat better, but not as better as I would like. Normally, after one heals from an infection, there is a wonderful feeling of general healthfulness. A feeling of truly being better. It often comes with a rush of mojo so you feel like you can take on the world. With chronic illness, not so much.

I felt when the antibiotics kicked in. And I have felt the infection slowly resolve. But any boost of energy was lost in me just trying to catch up the most basics. It is frustrating beyond belief. It is also an opportunity for me to practice my radical acceptance.

It has not all been bad. A bit confusing perhaps, but not bad. Inexplicably, I have been finishing my feed without increasing the speed on my pump. Some days I finish early. Today I finished right on time. I have no idea what is going on. But I am getting full nutrition, so I am not complaining.

I am complaining (a bit) about some ongoing discomfort with my tube. But it is not so bad that I don’t think I can hold on until my appointment with the motility doctor on July 10th. The motility doctor will most likely NOT be the doctor who can help me with my tube, but I am hoping that the benefit of a motility center is that there is at least one doctor there who can manage my tube. And hopefully they can do something about it quickish, because I am now in the window when my tube should be replaced (four to six months, with six months being in very early August).

I am not spinning, but I am beginning to read easy novels again. Actually, I am juggling a YA science fiction book (which is not my usual genre, but it is the first novel of someone I have subscribed to on substack for a couple of years and I am curious about his fiction) and an autobiography of a cartoonist returning from WWII. David encountered it while unpacking and passed it on to me. Both are slow going, but going, which is about all that matters to me right now.

I am increasingly frustrated with Facebook’s algorithm and how so many more people saw the post that I had moved to Woodacre and no one saw the link to my blog. Basically, I am just about completely fed up with Facebook, but I cannot leave because that is where the critical mass of my people are. Anyway, if you want to keep up on my adventures, you can always subscribe on this page and you will get the posts in your email.

One last thing, because I want to end this post on an up-note. Our move to California has been so good for me. It has been great to be able to get together with friends and family from near–and in some cases from far-ish (east coast)–in our backyard. Completely maskless and in our own little bit of forest. definitely an upgrade.

Side Quests

It has been way too long since I last wrote a post. Much longer than I had intended. But I am still learning to navigate the world of chronic illness, so some things that may seem obvious to others somehow turned out to be news to me. For example, when you have a chronic illness, UTIs are a really big deal.

When I overexert myself, whether that be physical or mental, my gastroparesis symptoms flare up. Other times, when everything is calm and quiet and I am just hanging around, minding my own business, my gastroparesis symptoms flare up. My point is that my disease is cyclical and this is going to be an ongoing issue for me.

My feed is so close to 100% of my goal (I am at 50mph right now) that it no longer matters if I have a bad day, or even a stretch of bad days, and can’t eat. But not drinking is another matter.

I struggle with my hydration on the best of days. I can’t get enough water through my feed or my flushes, so I need to get another 20oz (ideally) orally. The problem is that I often find drinking to be incredibly uncomfortable. It either nauseates me, hurts me, or most often, both.

I was recently in the middle of a gastroparesis flare when the weather turned hot. Thanks to my dysautonomia, I struggle to regulate my body temperature. Fortunately, I had already been alerted to the fact that this makes me incredibly vulnerable to overheating and/or dehydrating in the heat. Yes, I am copping to having known to be on the alert for dehydration when the weather turned hot. But I was also feeling like crap and drinking was truly and utterly unappealing.

I already fed you the punchline of this story, I ended up with a UTI. One that hit me like a ton of bricks. So much so that I allowed myself to ignore it when I first felt the first inkling of an issue. I kept hoping that I was just imagining symptoms and that it would go away on its own. Spoiler alert. It did not go away on its own.

Fortunately, we have a good primary care doctor who gave me magic antibiotics. She warned us that they would worked slowly but that they also only target the bladder. I was more than happy to wait a bit for relief if it meant not having to try to rebuild a gut biome without eating.

As promised, the antibiotics took their own, sweet time before I started feeling better. I started the antibiotics on Wednesday night. I am writing this on Sunday and the today is the first day that I feel like my usual crappy-feeling self again.

David made me a lightly sweetened ginger decoction that I have been adding to unsweetened cranberry juice to help offset the nausea that comes with drinking. And thus, I have been able to both address any lingering issues of dehydration and recover from my UTI. But there is a very important take home lesson from this experience.

For me, hydration is as important to my health as taking my medication. The alternative for me is a trip to the ER for IV hydration. While I am incredibly grateful that this is available as a fallback, it is something that I would like to avoid if it is at all under my control.

Almost There (again)

It has been almost exactly a year since my hospitalization and my precipitous drop in nutrition. My nutrition is now approaching where I was at the height of my nutritional input.

I am feeling the consistent and increasing nutrition physically. I have a little more energy, enough to walk our steep circle a second day in a row. I could only walk a quarter of the circle (it was the 50ft incline and not that distance that were the challenge for me) when we first moved here at the end of March. I won’t really know the impact of my extra activity on my future energy until I see how I feel tomorrow. From today’s perspective, I thought it went really well.

I am also feeling my brain function continuing to return, which remains a mixed blessing. Yes, I have the brain capacity to write this blog post, and hopefully more frequent updates in the future. But, it has unleashed a body dysmorphia tornado that has been wreaking havoc in my mind. I would rate it a 9+ on a scale of 1-10 with 10 being the worst imaginable psychic pain I can imagine. Although it kind of frightens me to think of anything worse than this. I know that may sound alarming, but I assure you that my therapist is on it. I am also starting somatic therapy to help me manage my physical pain. That can only help, right?

In other news, David continues to earn his Rockstar Status badge for being an unpacking demon. For the record, we have too much crap. We intend to do a very hard sort once we have everything unpacked. We have had 2/3 of our stuff in storage for almost 2 years and it has been a good opportunity to reacquaint ourselves with said stuff. The first sort is well underway as David has already designated a rapidly filling staging area for the stuff that didn’t even make the first cut.

Chag Ha’Aviv – The holiday of Spring

A small table with a seder plate with a roasted egg, roasted beet, charoset, parsley, salt water and horseradish, a covered plate of matzah and two kiddush cups. Happy Passover to all who celebrate or take interest in such things. David and I had a lovely seder together and it was the best since The Before Times. We thought about trying to host a seder since we now have the outdoor space, but we do not have the furniture, the dishes are only partially unpacked (not for lack of effort–David has been an unpacking machine) and honestly, neither of us had the spoons to do anything big this year. But next year, watch out!

In other news, I am really liking our new primary care doctor. She is a concierge doc, so she doesn’t come cheap, but she gets it done. I was having some stoma pain (my stoma is the hole where the feeding tube goes into my stomach) and I asked her for some topical lidocaine ointment. She not only gave me a script, but she found me an ostomy clinic where nurses deal with nothing but stomas of all kinds.

I had my appointment at the ostomy clinic this week. The nurses were wonderful (I got two for the entire appointment) and they were excited to get to work with a relatively healthy patient. We had a good conversation about stoma care, they introduced me to some local resources (including an independent pharmacy) and they sent me on my way with a goodie bag.

Next week, David and I both have our extensive, two hour physicals with the new doctor. She has already ordered extensive lab work and David and I dutifully offered up our veins. I am not expecting any surprises, but it will be nice to talk to a doctor who is focusing on more than just my broken digestive tract.

I am continuing to increase my feed and I am now at 48ml per hour. Last year at this time I was at 54ml hour. I was able to read silly novels and knit. I am not there yet, but I am definitely seeing an increase in my energy. Even David commented that I turned a corner in the past week. It has been a long time coming. Next week it will have been a year since my hospitalization and the precipitous drop in my feed down to 25ml per hour. That is a year that I am glad to have left behind me.