Eva's Gastroparedic Adventure

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.

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.