Eva's Gastroparedic Adventure

The transition to enteral feeding continues to go well. This afternoon, I did a couple of hours at 33mls per hour. The goal is 54 mls per hour. I will stay at 33mls tonight when I reconnect and, depending on how I feel, set it back to 32mls while I sleep and then go back up to 33mls after I wake up tomorrow. This allows me to push a bit, while still getting a good night’s sleep.

This morning we met with my Registered Dietician from Stanford and my PCP who will now be managing both my TPN and enteral feeding for the foreseeable future. We agreed to reduce the dextrose, protein and volume of the TPN and go down to 6 days a week.

We are now at a point where I need to start taking responsibility for my hydration again. It had been nice to just rely on the TPN for my hydration. Drinking is still a miserable experience and flushing continues to be an issue unless I go really slowly. But in the grand scheme of things, I am pretty damn motivated to get off the TPN, so I will just deal with the unpleasantness required to keep me hydrated.

Speaking of unpleasantness, I have very persnickety skin. When the PICC line was on my left side, I had absolutely no issue with the adhesive on the dressing*. My right side is a completely different situation. After a couple of days, I developed a sizable angry blister and a couple of hives from my dressing. One of which we watched grow yesterday during the dressing change. We are going to see how this week works out and we may try some of the other dressing options to see if my right arm likes it better.

My pain continues to be on the low side of my normal. If only my nausea was as cooperative. It has been pretty awful lately. Plus the ramping up of my enteral feeding is aggravating my nausea. My PCP prescribed me a new nausea med that she encountered in the notes from my GIs in NY. The GIs didn’t think it was a good match at the time, but the situation has changed and she thinks it is good time to give it a try.

When I am in intense pain, all of my thoughts, anxieties and neuroses disappear. I simply have no bandwidth for them. But when I am doing better, like now, they all come roaring back in. Recently, I had an encounter with a belief system that is so deeply ingrained in me that I had a visceral response to it. In fact, the belief runs deep enough that my therapist wonders if it epigenetic generational trauma.

As I have mentioned before, I have had an eating disorder since I was a teenager. One of the ways I have managed it through the years is a refusal to know my weight. Those numbers are just deeply triggering and problematic and can haunt me for days if not weeks.

Unfortunately, weighing myself is a key data point in the transition process from TPN to enteral feeding. At first, I tried to arrange it so that I would stand on the scale with my back to the readout. David would then communicate my weight to the relevant people and keep me out of it. That lasted about a week before I called it because it just got unwieldy for him to have to run into another room and close the door in the middle of a phone or video appointment. I figured I would just have to suck it up and know my weight. And we did ok until I had recovered enough for my brain to remember its triggers.

Recently, I got on the scale and had a full body reaction of deep loathing to the numbers I saw. To be abundantly clear, my doctors and dietician have not expressed any judgments about my weight. They have only been asking for a key data point. My reaction was entirely my own brain responding to a trigger for some deep, deep trauma.

I looked up from the scale, looked in the mirror and had the startling realization that I have two sets of tubes coming out of my body and absolutely no negative feelings towards them. This left me wondering about the absolute horror I feel when looking at my own body in an of itself. I wondered if I hate my body so much, why doesn’t it bother me at all to have a G/J tube and its stoma as well as a PICC line? Emotionally, I am absolutely neutral on them.

As I have said before, I have an excellent therapist and I am working on these issues with her. Her theory, and I think it is a good one, is that I understand the tubes with my cognitive mind. I know their purpose and despite the problems that they have caused, understand them to be the tools necessary to keep me alive. The body image issue is far too old and ingrained to be stored in my cognitive brain. That is why my feelings are visceral and not thoughts, per se.

I really struggled about whether I wanted to share more information about my body image issues. But then I thought about all of the times we judge ourselves and others for their bodies for eating and drinking. How we hold ourselves and others as responsible for their body size based on what they eat and drink. And obviously, there is some correlation between caloric intake and body size. But I now understand (and the data backs me up), that there is so much more in play there than just calories in and calories out. Yet my own self-loathing and judgment is so strong that 3 simple numbers, and in this context that is all they are, just numbers, can send me into a terrible tailspin.

*Initially, I had a small reaction to the dressing they gave me at the hospital. The home nurses tried two other options and the one that worked for me worked absolutely perfectly. No reaction whatsoever.

If you recall, my PICC line has been recalcitrant when it comes to blood draws. We have Caf-Pow’d 3 times and we still don’t get blood return. So tomorrow, I am getting a brand, spanking new PICC line put it. This time on my right side.

Apparently, even though it is a longer route from my right arm to my heart, it is a more direct route. Left side PICC lines have tighter turns and can get pretty picky about how the body is positioned for it to work well.

It also turns out that PICC lines are put in by interventional radiologists (IR). While my PCP was discussing my case with the IR doctor, she brought up the subject of my G/J tube.

In theory, G/J tubes can be changed by IR doctors as well as by the interventional GIs, who do it endoscopically. When my tube flipped the first time in MA this past summer, I was sent initially to IR to have them replace it. They tried, but a combination of the angle of my stomach and my anatomy made it impossible to make a turn. They kept the stoma open with a temporary G tube and referred me to the endoscopy department.

The local IR doctor told my PCP that GIs have a tendency to place and angle their stomas in such a way that can make it difficult for IR to change the tube. So at least I know that he has encountered difficult placements before.

I really have nothing to lose by letting IR take a shot at swapping out my tube tomorrow. I am not using the current tube at all because it is all clogged from disuse. If they succeed at swapping out my tube, then I can start the process of slowly switching over from TPN to enteral feeding immediately. If they are unable to swap the tube successfully, then it will be done endoscopically at Stanford on December 19th.

There is some minor collateral damage from all this. David and I had to switch sides of the bed, after 26 years, because I needed to have my left arm on the outside so I could feed while I slept. Tomorrow, after 3 1/2 months, things return to their normal order.

But I do have some regret. Ever since we switched sides, Xena Malka has given me the most amazing early morning cuddles. David is really her human, but she has stepped in a bit since Dancer died and I was left catless. But since we switched sides, she has really stepped up her game. But if she is consistent, then those amazing cuddles are about to come to an end.

When we first moved to Astoria, two and a half years ago, David and I switched what side of the couch we sat on. This was to give David the seat closer to the window. Xena Malka’s response was to completely ignore David and lavish me with all of the attention. This hurt David’s feelings, so we tried to figure out what he was doing that was so upsetting to her. We swapped seats on the couch and suddenly David was back in her good graces.

So it is possible, even likely, that as soon as David and I go back to our usual sides of the bed, all of the love and affection that I had been getting will get redirected to her actual human, David. This is the price I have to pay for good blood return. So be it.

I have taken the last of my antibiotics and I find myself feeling as good as I did back in July, before this all started. On Thanksgiving, I was able to stay engaged and social for 6 hours and I ate a very small amount (but more than I have been able to eat in a long time) of delicious food. I only had one episode where I got so queasy that I needed to re-medicate. Overall, a raging success.

This is particularly excellent news because we have people coming to visit us every month through February. We are clearly emerging from the cocoon we constructed, by necessity, over the course of my most recent health crisis.

Now that I have the ability to think again, I find myself trying to process the last 4 months. Severe pain forces one to shrink their focus down to what is immediately in front of them. I was stuck in the lowest level of Maslow’s Hierarchy of Needs. I couldn’t think, I couldn’t plan and I certainly couldn’t process what was happening to me.

David came to all of my medical appointments because I was an unreliable reporter. I couldn’t even remember how I had felt the previous day. All I knew was the present. The past was irrelevant and the future was unimaginable.

David was an excellent reporter and an even better advocate. Sometimes David would push for things that didn’t even make sense to me. But I was usually smart enough not to push back. And in the harsh light of day with the benefit of hindsight, he was always right.

TPN (my IV nutrition) requires special care. My PICC line leads right to my heart, so infection is always a concern. A nurse has to come in once a week to draw blood for labs, change my dressing and change the extensions. The reason that she no longer comes twice a week is because she trained David to change my extensions. This is not something she teaches all of her patients. But she was particularly impressed with David’s careful attention to the finicky process.

This was not the blog post that I had expected I would write. But it is apparently what I really needed to say. It seems that the first thing I needed to do as I start to process the past 4 months, was to express my gratitude for David and all he has stepped up to do. He has been amazingly supportive since I first got sick, but he really stepped up during this most recent crisis.

Our 25th wedding anniversary was on November 7th. But I was in no shape to celebrate it then. I would like to take this opportunity to acknowledge that I chose very wisely. I cannot imagine a better life partner. And as much as I regret that I need to be cared for to the degree that my health demands, I would not want anyone else to be there for me than David.

This is Eva Actual.

I have a daily assignment from my pain CBT class to write for 10 minutes every day. That kind of concentrated effort does cause me a little pain, but nothing the associated binaural relaxation technique (think EMDR) doesn’t offset. And given that I had already worked out a system to get a little writing done, I figured why not write a blog post, for a change.

My status is very much improved. We now think that I picked up the C.diff at the hospital in Springfield, MA, back in July when my tube kept flipping and I got to know their ER really well. The timing lines up with the onset of the pain. Despite being hospitalized twice after that, it didn’t occur to anyone to check for C.diff. Not even when I had a consistently high white blood cell count for months. The doctor at the hospital attributed it to the TPN and my PCP just followed his lead. To be fair, she knew nothing about TPN until it was foisted on her by my GI.

I am now on my second round of antibiotics, and finally on the one that is the preferred treatment for C.diff. Apparently it is designed to stay in my gut even after I finish my course, so my symptoms should continue to improve as they did after I completed my first round of antibiotics. During the 10 days it took for me to get the prior authorization approved by my insurance company, I spent 7 of those days unmedicated, which was incredibly frustrating. Fortunately, it all seems to be working out in the end.

The TPN is down to 12 hours a day. David hooks me up before we go to bed and then disconnects me in the morning. On days when I have no need or interest in getting up that early, David disconnects me from bed. Which is the normal person equivalent of having your partner bring you breakfast in bed. I have a pretty sweet deal.

My PICC line (through which I get my IV nutrition) is also designed to be used for blood draws for my weekly labs. However, it has never been particularly great on this front. Even when the nurse did get blood return, it tended to be sluggish and barely fill the tubes enough for my labs. David and I have learned a lot about the minimum fill requirements of the golden and lavender topped tubes used in blood draws.

Right now I am on day 2 of leaving in CathFlo* overnight to clear out whatever is hindering the blood return. CathFlow is the roto-rooter of catheter occlusions. See all the fun things one can learn from being a tubie?

After months of neglect, I have started flushing my J tube again. It too, is somewhat occluded. I can get in 25ml twice a day with some discomfort, but no pain. Any more than 25ml at a time just bounces back out. I am not going to invest the time and energy (and possibly pain) to clear out the tube. Instead, I am to increase my flushes to 3 times a day and continue that until my tube swap on December 19th. This should be enough to get my intestines warmed up to resume enteral feeding again.

The plan is for me to go back to 18 hour feeds (I had been at 20 hours in July, but that was to maximize caloric intake). Since we will be titrating the TPN down as we increase the enteral feeding, I can take the extra two hours off without losing any nutrition.

*David and I both call it Caff-Pow to each other.

This is David writing for Eva.

So many things have happened since I last wrote. So little has changed. 

The big change is that Eva was diagnosed with C.diff, , a nasty little bug that lives in the intestines. It can cause, among other fun symptoms, diarrhea and intestinal pain. It is possible that all the symptoms we’ve been attributing to the tube can be laid at C. diff’s metaphorical feet. Or not. The good news is that C. diff is treated with antibiotics. The bad news is that it is extremely difficult to treat. It takes specialized antibiotics that function in the intestines, and often requires extended courses (like six to eight weeks). Eva is coming to the end of the first week with no significant improvement, is waiting on insurance approval for a switch to an even more targeted antibiotic, and on it goes. 

C. diff, is something familiar to anyone who has spent any time working in a health care setting. It requires certain precautions before going into a room: putting on a full gown and gloves. It is both extremely contagious and an extremely resilient bug. Assuming I am negative for it (which, given a lack of symptoms, we are assuming), we must be doing really good basic hygiene. Alternatively, my body just fought it off, or I’m not particularly symptomatic?

In any case, we now have a disease for Eva to fight off which is curable, which makes for a nice change of pace. 

In terms of the tube swap, we have had so many steps forward and back that it is hard to keep track. We were scheduled for a tube swap on Monday of this week. This was an ambitious goal for insurance to render a decision, but with much chasing on the part of our complex care coordinators, we got an answer on Friday. Insurance approved the procedure, but not at Stanford. Procedure canceled. 

By the end of Monday, we had gotten approval to do it at Stanford, but only after beginning to figure out how to do it at UCSF, and, of course, needing to restart the scheduling on the procedure. 

C. diff throws a new wrinkle in. It turns out that the procedure can be done while Eva has C. diff, but it needs to be the last procedure of the day. But . . . there are questions about whether Eva should wait until the C. diff clears up so that the new tube isn’t exposed to C. diff. The medical consensus seems to be that waiting is the better course. Scheduling called today and offered two dates for a tube swap. Next Wednesday or December 18th. Eva had to take December 18th. 

In case all of this wasn’t enough, there was an election this week, and the winner has been trying to end the ACA (Obamacare) since first taking office. Without Obamacare, we are uninsurable at reasonable cost. We would need to go into state high-risk pools. We are definitely beginning research on places that might accept us as immigrants and that have high quality medical systems. 

Other than that, everything is just fabulous. Eva continues to be in lots of pain with sides of nausea. Except on days when the nausea is primary to the pain.

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 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.