Eva's Gastroparedic Adventure

Despite our collective hopes, yesterday didn’t go as planned. Normally, I would start with the good news, but I am still working on processing the bad news, so you will have to wait for the good stuff.

Procedurally, yesterday went fine. Well, except for the being rushed out of recovery by a nurse before I got to talk to the doctor again. But given how hard this guy is to reach, we insisted we see him before we left, so she shoved us into a closet (seriously) to wait.

Eventually the doctor came in, confirmed that yes, my original J tube had a clog (this was the reason for the evening call on 1/26) but that everything else looked good. As planned I called the stoma nurse on her day off, she sent me to another part of the hospital where another nurse took me into the bathroom (it wasn’t a clinic day, so it was either her cramped office or the bathroom) showed me how to apply the disk (it isn’t really a disk, more of a 4″x 4″ thick sticker) and sent me home with all of the materials I needed to do it on my own. Except for the lack of space, this is how I honestly expected my entire tube experience to go. It was a nice change.

But I digress. When we got home at about 4pm, having not fed or had any liquid since 10pm the previous night, I set out to flush my tube and set up a feed. Except that I couldn’t. First off there was the logistical challenge that the new tube has a different kind of connector than the syringes I have, so even with the adapter the hospital sent me home with, it still required a fair amount of jerryrigging. But even when we got that worked out, I could push the water in the tube and then it would just come out. I was also feeling some new and very uncomfortable pressure in my jejunum and I had to vent my J tube for the first time in…ever.

I called the on call doctor who gratefully completely agreed that there was no point in sending me to the ER because the issue was with the J tube which they blanketly refuse to deal with. She called my doctor who told me to come back into Endoscopy today and he would see me between patients. If I can’t flush, I can’t feed, so no nutrition for me. Instead I spent the evening trying to hydrate and get some electrolytes into me.

This is where we get into the good news. The disk, something that I was dubious would work, has worked wonders. I didn’t wake up in pain any time during the middle of the night. While the inflamed tissue is still present, the pain is not. And presumably, that will allow the tissue to heal over time. The moral of the story? Trust nurses. They get the work done. Also, they deserve better wages, better nurse to patient ratios and more reasonable working hours. Nurses rock.

But all was not well. I woke up with a whole new type of queasiness with which I had not yet encountered. This was a deep pressure from my jejunum. I staggered into the bathroom and desperately vented my J tube. So just as I got the stoma pain under the control, I got this misery to replace it.

Impressively, we didn’t have to wait unreasonably long for the doctor to see me. So much faster than the ER. He tried all of the same things I did with the same results. Except that he tried to convince me that it would work if I just pushed in a whole bunch of air to push the liquid through. But, after making me completely uncomfortable (which is a euphemism for almost being in tears) the water just came back up.

He tried pushing through a guidewire and that didn’t work. Then he just shrugged at me and said that he didn’t know what to tell me. I reminded him that I could not feed like this. He suggested that I try feeding into my G tube. I reminded him that if I could feed into my G tube, I wouldn’t have a G-J tube.

After repeating a few times that he didn’t know what to tell me, he said that he would just have to go back to the lesser, leaky tube. Like this fancier one was the better option. And it may be, but only if it is functional. Which is basically what I told him. He then suggested that I might need to get a separate J tube (which would mean managing two tubes and two stomata (the plural of stoma), which seemed like a huge leap to me considering that my previous tube was perfectly functional. I told him that I was good getting the old style tube back. He said his schedule was booked and that the best he could tell me was to go through the ER. Until I reminded him that a) the last time he told me that I got sent home after they did nothing. and b) since it is a J tube and the ER doesn’t deal with J tubes, they were just going to send me back up to him.

He managed to find an opening for me Thursday morning where, almost as an afterthought, he mentioned that he would first see if he could figure out what the deal is with the J arm of this tube and if that didn’t work, put the old style tube back in.

For those following at home that means nothing resembling adequate nutrition from Sunday at 10pm until some time Thursday. I am working hard on pushing in electrolytes and hydration orally.

And because life was still too easy, Xena Malka has had a weepy eye for a couple of days. It has gotten worse and now she care barely keep that eye open. So David is taking her to the vet right now. Because as he says, that is what he does, takes his girls to the hospital.

It has been a few days since my last post, but don’t worry. You haven’t missed anything. Things remain unresolved. But not for lack of effort.

Previously on Eva’s Increasingly Absurd Reality, I had sent an email to my gastroparesis GI asking for a referral to another tube GI who would be responsive. The next morning I got a message from him on the portal saying that he had spoken to the tube GI who had been in New Zealand for at least one of the hospitalizations. Like that was a reasonable response that got him off the hook. He is not in a solo practice, he works out of the hospital. He has colleagues. I have met them.

Anyway, he also asked for photos of my stoma, which I promptly sent. The portal does not allow uploads, so he asked me to send them through the practice’s general email. Which I promptly did at 10am, when I got up. I hadn’t heard back from him by the afternoon, so at 4pm, I sent a follow up message through the portal confirming that he had received the photos. This morning I woke up to a response to my confirmation message from one of his admin staff simply stating that the doctor is now out of the office until Monday. So much for that route.

Yesterday morning, I also called the nurse, Esther, that the tube GI’s nurse referred me to. After not getting a call back all day, in desperation, I scheduled an appointment with one of the teledocs that our insurance gives us access to at no additional charge. All I had was a name of the doctor, no photo, no bio, she could have been anyone. Turns out she is one of the more responsible doctors that I have encountered.

She was incredibly sympathetic, but she was very clear that as a general practitioner, she had no experience with stomas and wouldn’t even know what antibiotic to prescribe. Honestly, I hadn’t expected her to be able to do anything. But at that point, it seemed worth a try.

This morning someone from the nursing department that my tube GI’s nurse referred me to called me back. They had no idea who this Esther was whom my tube GIs nurse spoke to and they told me that if it was an infection, there was nothing they could do about it and that I needed to see a doctor. I relayed my tale of woe and they put on Irma, who seems to be a head nurse. She asked me to text her photos of my stoma while she was on the phone.

She took a look and said that it was not actually an infection, but hyperplasia, which is tissue that has grown due to irritation. And the source of the irritation? My bumper is too tight. Which, you may or may not recall is also the reason for the ongoing bleeds, which were the reason for the very first ER visit back in December. So we continue to be dealing with the exact same issue that seems to elude anyone’s ability to address.

When I asked what could be done for hyperplasia, she said that the stoma could be resited (aka, cutting another hole in me and leaving this one to heal) but that this stoma looks well sited. So instead she suggested what is essentially a seatbelt for my tube to keep it from moving around, which moves the bumper around which causes the irritation. I wasn’t really clear on what that does for the incredibly painful hyperplasia or herniated tissue (that is what happens when an amateur gets two different diagnoses for the same tissue, you just go with both), but I am all for it not getting worse.

Of course, she can’t do anything without a doctor’s order, so she sent an email with the photos to the tube GI and the nurse practitioner whom she “presumes works with my doctor” along with her suggested plan of action and *gasp* called me back to let me know she had done so. I never get callbacks. I love this woman. She even gave me her direct number. I can now call a competent human being when I have questions. She may not be able to do anything about it, but she does know stomas. Sadly, that is better than nothing.

The take aways from this are that it is not an infection and my doctor shouldn’t be able to turn me away on Monday when I show up to get my tube changed. He may or may not have taken note of the situation, but he cannot say he is taken by surprise when he sees me and my herniated/hyperplasic tissue on Monday. It is Thursday, which means that I only need to get through 3 and a 1/2 more days of this pain and misery before I actually get a doctor’s undivided attention for as long as it takes to swap my tube. And that when that is over, I will have an adjustable bumper so hopefully I will never have to go through this exact situation again.

In other news, I had tried to start up acupuncture again this week, but I was in too much pain to go on Tuesday, so I rescheduled for next week. My intention had always been to restart after the tube swap, but I was in so much pain, I was hoping to get some relief earlier. But I just couldn’t imagine getting it together to leave the apartment.

Speaking of leaving the apartment, on February 20th, the sole elevator in our building is being taken out of service for 2-3 weeks to repair a motor that is making some really unfortunate noises. We live on the 6th floor. We didn’t have a firm date for the repairs until yesterday, only a “soon.” So despite the pain, we have been building my physical endurance just in case the elevator was out of service when I come home from my procedure on Monday. I can now do 3 flights of stairs up and down. So I guess I have that going for me.

This past week was reminiscent of 2020 in that it felt like it was at least a month long. The week started out as expected as we continued to slowly recover from the trauma of the ER visit. Trauma that remained clear in our minds as the infected herniated tissue in my stoma got worse.

We have grown to have a real distaste for Fridays because that is when I seem to end up with health issues. This past Friday was no different. I had gotten the infection under control with the only tool I had, OTC antibiotic cream. But something inexplicably changed on Friday and the infection suddenly got worse. We didn’t know what to do. If we called the doctor, he would just tell us to go to the ER, and that was not something that we were willing to do again.

A brief aside here. I hate the common 1-10 subjective pain scales. What do the numbers really mean? Especially as someone who has, by necessity, built up a high tolerance for pain. So is my 3 someone else’s 5? Who can tell. I much prefer the ones that assess a patient’s subjective rating of pain with the objective determination of the pain’s interference with daily activities.

For example:
0 No pain

1 Tolerable (and does not prevent any activities)

2 Tolerable (but does prevent some activities)

3 Intolerable (but can use telephone, watch TV, or read)

4 Intolerable (but cannot use telephone, watch TV, or read)

5 Intolerable (and unable to verbally communicate because of pain)

Based on the above scale, I spent Friday and Saturday at 4. By Sunday I was back down to a 3.5. We decided that the prudent thing to do was to just wait until Monday morning at 9am when I could call the GI’s office during business hours. It was me, acetometaphin and ice. And a very frustrated and helpless David who could only check my timing on my meds and replace ice packs for me.

Oh, and there is one more thing. The motor in our elevator is due to be replaced any time now and it will be down for a week or two. David runs up the stairs regularly for exercise. But I am in no shape to walk up 6 flights of stairs and for all we know the elevator may be out when I come home from getting my tube changed next Monday. So we practiced by me walking a very shaky flight of stairs. Fast forward to today, and I am up to two full flights, so I am making progress.

Anyway, back to the story. We overoptimistically hoped that the GI might be willing to change my tube early because of the infection, so Sunday night we stopped my feed at 11pm so I could be ready. They want you to stop any intake of clear liquids 3 hours before anesthesia. When I woke up I just sipped enough water to take my meds (ok by their guidelines) and flushed my tube, but whatever.

At 9am on the dot I called the office and left and urgent message for the doctor about the infection and the pain and that we would not go to the ER again. At about 12:30, the nurse calls and confirms my pain levels and that I am taking Acetometaphin and says she will call back. Meanwhile, I continue not to drink awaiting a call back.

At 3pm, I have therapy. I tell my tale of woe to my therapist. She calls it outrageous, malpractice and unacceptable. We agree that I will call again at 4pm and leave another urgent message. Which I do. At that point, I am completely dehydrated and have gone way too long with out any nutrition. So we assume nothing is going to happen that day, I hook up a feed and proceed to miserably force a lot of liquid into myself.

Suffice it to say that my body was not a fan of the long break between feeds. But I am mostly recalibrated now. Although once again, I do get to repeat the experience next week. At least I will know what to expect.

This morning, having still not heard back from the nurse, I send a message to the GI who referred me. I told him an abbreviated version of the saga and ask for a referral to a more responsive doctor. At about 4pm this afternoon, the nurse finally called back. She said she would have called back sooner, but nobody in the GI practice that is located in a hospital knew how to find someone who is responsible for stoma care. Because apparently it isn’t the GI who puts in the tube or anyone in his practice, nor is it anyone in the GI’s practice who takes care of my gastroparesis.

Just to break that down for you a bit more. As far as the GI who puts in the tube is concerned, their responsibility ends the minute the tube is put in. But they have no idea who they pass the baton of care to. This is not just my experience. I asked my tubie group who was responsible for stoma care so I would know what to ask for. The only answers I got were people telling me horror stories of inpatient stoma care by people who obviously had no clue how to care for a stoma. In a group that is normally great for those kinds of answers, I got crickets.

But, kudos to the nurse who actually did track down who the stoma care baton was supposed to be passed to. An Enterostomal Therapy Registered Nurse. That is it, it is all there in the title. Yet it took over 24 hours for a professional to answer me. In fact, she located a nurse for me and asked her to call me to set up an appointment. Given that I have learned never to expect a callback, I got her number too.

It was late enough in the afternoon and I was feeling a bit more 3.7 than 3.5, so I used the energy boost from finally getting an answer to write this blog post. Calling the Enterostomal Therapy Nurse is a project for tomorrow.

Usually, I can just sit down and bang out a blog post. That was not the case with this post. This one took several attempts over several days. I think you will understand why once you have read it all.

This is the saga of how a cumulative 34 hours in the ER not only failed to resolve an issue that could have been easily addressed in a single face-to-face doctor visit, but made it both much worse and left a patient and her spouse traumatized.

If you recall, back in December, I had a stomach bleed and was sent to the ER by my doctor. I was supposed to receive a medication that would help my stomach heal, but it was never administered. Eventually, I volunteered to vent my tube, we saw that the active bleed had stopped and I was sent home. Issues addressed:0.

A week later I was once again sent back for the same bleed. This time someone from GI actually came down to see me. He determined that there wasn’t enough space between my inner and outer bumper because I had gained 4lbs and he yanked my tube out a few millimeters. Afterwards, an attending GI and her minions came down and confirmed that my outer bumper should never be any tighter than it was after the adjustment. I was given the Rx that I should have been given at the first visit and sent home. Somehow completely missing that this would eventually lead to my third, and most horrific ER visit.

Two and half weeks later, after some continued small bleeds, the GI who had originally inserted the tube said that I had been having a harder time adjusting to my tube than most and grudgingly agreed that the inner bumper might be the problem. However, since the plan had always been to swap out my current tube for the kind he liked better after four to six weeks, he agreed to put me on his schedule on 2/13 for the replacement. He added that the new tube’s inner bumper is an adjustable balloon and would most likely be more comfortable for me.

I had a good 3 weeks and David and I were feeling optimistic about beginning to think about making plans for the future. But then once again, bumper issues resurfaced.

I believe the timing was purely coincidental, but it was the combination that kicked over the dominoes. Wednesday night, I had a very specific, but repeatable clogging issue in my tube. It worried me enough that I called the on call doctor. They told me to use warm water to dissolve the clot.

I did not go to medical school, but even as a relatively new tubie, I know how to deal with clogs, having had my share of them already. I didn’t think warm water would make a difference, given that I already use warm water to flush, but I agreed to try it. Whether it was the elapsed time or the warm water, it didn’t matter, the clog had cleared. End of story.

The next day was a different issue. First, some history. I had noticed some loose tissue in my stoma (the hole that my tube goes through) after the tube yanking incident during the second ER visit. I knew that with tubes come the potential for skin issues, so I wasn’t concerned. It was a bit irritating and uncomfortable, like having a blister, but nothing worthy of note.

For reasons unknown to me, this piece of tissue became inflamed and irritated this past Tuesday. It was bleeding and looked like it might be infected. I added a topical antibiotic to my cleaning regimen and clued David in. Wednesday he decided to hang out with me when I cleaned my stoma. He had been kind of unhappy* to hear that my stoma was bleeding the day before and wanted to see things for himself.

This time the tissue was more inflamed and the bleeding was worse. Nothing serious, think a bad cut. As I was drying the area with a cotton ball, I got a flash of pain and felt woozy, so I sat down on the bathroom floor. Then I started to see stars (it is not just a cartoon thing, apparently) so I lay down. I never lost consciousness, but per David, I wasn’t able to see anything but stars for 3-5 minutes.

Once I could comfortably sit up, I called the doctor on call’s service and left a message. I was still lightheaded when the doctor called back an hour later. The doctor wanted me to come into the ER right then. I pointed out that they wouldn’t be able to do anything until morning so in my mind it made more sense to get a good night’s sleep at home, set an alarm and go to the ER very early the next morning. That way the doctors would still have any test results when the clinic opened at 9am. For the record, David was unthrilled* with my plan. But both he and the doctor saw the logic in my plan, so we agreed that was what we were going to do. She also said that she was going to send a note to my doctor telling him that I had called them two evenings in a row

A couple of hours later I get a call back from the doctor on call. My doctor had called her and said that he wanted me to go to the ER right away. He had put in orders for the tests he wanted, including a CT scan in preparation for scoping me the following day. This included the replacing my tube earlier than my appointment scheduled in February. While I still thought my plan made more sense, I knew better than to argue with two GIs telling me to go to the ER, so we packed up at left the house at about 9pm.

The ER seemed emptier than we had seen before and I was quickly placed on a gurney. The gurney area of the ER was packed, including poor folks placed opposite the bathrooms. The man maneuvering me around parked me in the entrance hallway (we could see the front door from our spot) saying that we would be much happier there than in the main room.

A nurse quickly came to find out what was going on and not long after the ER doc came to tell me that there was nothing that they could do for me there and that we should go home. I carefully explained that we had been sent there by my GI who works upstairs and that he had put in orders for the tests he wanted done. She left never to be seen again.

A short while later our nurse returned, I asked for some Zofran (I am telling you, IV Zofran is so very magical), which she delivered and David and I settled down to wait. At about 2am, our nurse came by to let me know not to eat or drink anything because I was going to be scoped the following day. I was feeding at the time, so I asked her if I should stop my feed. She confirmed that it was not going into my jejunum and not my stomach and said that it was fine to continue.

At some point in the wee hours, I was wheeled to get my CT scan. There was no queue at that hour and we were expeditiously returned to our hallway home. Around that time, our nurse checked back in, I got my Zofran re-upped and we continued to wait.

Shift change came and went, and still we waited. It had been hours since we had seen a nurse and I was getting pretty desperate for some Zofran. So David went off in search of a nurse. He asked the first one he came upon if she could point him to our nurse. She checked the system, discovered that she was our nurse (we hadn’t been on her paperwork) while our regular nurse was on break. She gave me my Zofran and we waited a bit longer.

Because bureaucracy waits for no one, at 9am I started making my now regular calls to my supply company and my GI to get the supplies from the order placed on January 10th. A mere 17 days prior. The insurance company had finally approved the order, but some unnamed middle entity that contracts with the insurance company to make the actual payments had rejected the order.

I found this out when a rep from the supply company called me about it. She had apparently faxed my doctor’s office twice and had gotten no reply, so she reached out to me to see if I could get the doctors office to respond. After pulling several teeth, I finally got the woman at the supply company to spell out exactly what she needed the order to say so that it would be approved.

It had been several days of fruitless efforts. No calls were returned and no progress was made. But I wasn’t going to let sitting in the ER stop me from trying. Spoiler alert: no progress was made.

At about 11am, having not seen hide nor hair of anyone responsible for my care in several hours, I went and sought out our nurse for an update. He was surprised because he had spoken to a GI fellow 30 minutes prior who said he was going to come speak with us. I was sufficiently aggravated that I called the GI’s office myself. The best I could get was the person who answered the phone would send an urgent message to the secretaries who are the only ones allowed to speak with the doctor.

An hour or so later, we finally got a visit from a GI fellow. He confirmed that there was an open slot for my scoping and tube replacement, and the doctor who would do it would be down to see me soon. I once again confirmed that it was ok that I was continuing to feed. He said yes, and left.

About an hour after that, roughly 1pm, The fellow and the doctor who would be doing my scoping and tube replacement came to see us. Her approach was antagonistic and made it abundantly clear at the outset that she did not want to do any procedures on me that day. It was Friday afternoon and I don’t think she wanted another patient.

She roughly poked at my abdomen, despite both David and I protesting that my abdomen was very sensitive. Without looking at my stoma, she gave me a lecture about my dressing. When she removed the dressing, she made the tissue bleed and muttered under her breath when she used the very same dressing she had just lectured me about to staunch the blood.

She said the stoma looked fine, but that there was just some herniated tissue. Let me unpack that statement a bit. I am not a doctor, but I do know that a stoma is never supposed to bleed. I also know what my stoma looks like and it did not look good. It was red, inflamed and bled when you just looked at it. But that isn’t the big take away here.

That tissue that had been bothering me for 3 weeks? That was not some skin irritation. It was a piece of my inside on the outside. That is not something that I believe should be dismissed off hand. Especially when that bit of inside is on the outside.

But the piece de resistance was when she said that the bumper was too loose and tightened it. Because why not top off a great ER visit by reversing what the doctors did at the previous visit?

The doctor continued to insist that my tube was fine and that it didn’t need to be changed. I just kept reiterating that the tube was being changed regardless, it was just a matter of when. And that my doctor had ordered it to be sooner rather that later. Finally she challenged me. She made me verbally confirm that I wanted her to change my tube. Twice.

I was getting increasingly anxious about her being the one to switch my tube. I was hoping that she was professional enough to do it right, despite her obvious desire to do anything but change my tube. But then she spotted her out. The relief was evident on her face.

I asked if I should disconnect from my feed. She said that I couldn’t get my procedure done since I had been feeding. This surprised the fellow because it is “post pylorus,” which means that it is below the stomach. The reason that you can’t eat or drink before anesthesia is because there is a risk of aspirating stomach contents while anesthetized. But the pylorus muscle blocks intestinal contents from the stomach so they cannot be aspirated.

The doctor said that she would have to confirm with the anesthesiologist, but that it was very unlikely that I would be getting my tube changed. They left and I burst into tears.

No one from GI had the guts to come break the news to us. Instead, they sent the ER PA to tell us that I was being discharged. He had reviewed my case and arrived knowing that we had been waiting for 18 hours. And that I had been told by my doctor to come in the previous night. He was kind and patient and caring and everything we needed at the moment. But honestly, that was of little comfort.

What he did graciously do for me is get an answer directly from the anesthesiologist about prep for my tube change in February. I was not going to be turned away again because of bad advice. Nor do I give up on nutrition lightly. This was was the only useful outcome from this entire experience, because the prep instructions that I received from the doctors office make absolutely no mention of instructions for tube feeders.

The discharge instructions were laughable:
“Follow up with Dr. Kumta. You should call the office on Monday to see if they can schedule your procedure earlier.” They couldn’t have been more ironic if they tried.

Speaking of irony, the kicker in all this? The topical antibiotic did its job. The herniated tissue was clearly infected and it has healed considerably since Tuesday. It is much less painful when cleaning my stoma and while it still bleeds when I touch it, it is only a few drops.

David and I left the ER late Friday afternoon and now, 3 days later, our bodies have mostly recovered from the sleep deprivation and the aches and pains that come from middle aged bodies spending 18 hours on hard chairs and gurneys. But emotionally, we both have a long way to go.

How does one recover from an experience like this? Knowing that I face a future of cyclic ER visits because doctors rely on them instead of office visits. It’s not like we can just walk away from the medical system at this point. And it is not just a problem with these particular doctors. I have been fighting against the medical system for two years now. I have had to learn everything I can about my own disease, from both the medical literature and others’ lived experience to direct my own care.

Perhaps it is because I now have enough nutrition in me to process my experiences, instead of just being able to put one foot in front of the other, but this just broke me. I am feeling completely defeated and ready to give up. That is not hyperbole. I just don’t think I can keep this up. But I wouldn’t worry about me just yet. My therapist says that I am a survivor. The fact that I pushed through literal starvation to navigate a completely broken medical system on my own is all the confirmation she needed.

The fact that I am giving up right now doesn’t mean it will last forever. I need some time to move past the immediacy of this trauma before I can start thinking about next steps. Meanwhile, I will continue to increase my nutrition, even if that means paying for my formula out of pocket. And on February 13th, I will get my tube changed. But that is all I can commit to at the moment.

*An understatement

I learned a new term yesterday: Treatment Burden. It is defined in the medical literature as “the workload of healthcare and its effect on patient functioning and well-being” This workload includes everything from the time it takes to make and travel to doctor appointments and treatments, acquiring supplies and medication, maintaining supplies and doing whatever treatments can be done by oneself, from counting meds to using devices like feeding pumps or nebulizers, etc. The literature also recognizes that patients in the US have the additional responsibilities related to dealing with insurance companies and a fractured health care system.

There is so much more written on Treatment Burden than on Gastroparesis. That makes sense because it is a universal burden. It applies to anyone who needs health care. But it hits those of us with chronic illnesses the hardest. A cursory search revealed an entire volume of a respiratory medicine journal dedicated entirely to the impacts of Treatment Burden on patients’ health outcomes. And although my health issues are not respiratory in nature, the more general articles resonated with me deeply.

It has been over two weeks since my doctor submitted my updated order for my nutrition. And that order still has not been acknowledged by our insurance company. It has also been 25 days since we got our new insurance (this is our fourth insurance company in 13 months). After many calls and much hold time, I learned that my insurance company allows 45 days for processing orders unless the doctor puts it in as an emergency order. Which, of course, has taken literally hours of my life to hopefully make happen. I am still waiting for confirmation from the insurance company.

I am a champion sleeper. Anyone who knows me well can attest to that. And yet here I am, at 5:40 AM after having been laying awake for almost 2 hours stressing about the fact that after today I will have to tap into my unexpected bonus reserve of feed bags that I got from a fellow Gastroparesis Warrior. The reserve that it supposed to be my backstop against emergencies. Little did I know that insurance companies’ internal policies (I checked, and there is nothing in the meagre policy information they sent us or in their incredibly poorly designed app or website that say anything about the 45 day processing time) even though the person I spoke to at the company said it matter of factly. I was told that my order was “well within their processing time of 45 days.”

I used to think that the term Gastroparesis Warrior was strange because a cohort of people being starved by their bodies hardly have the energy to be warriors. That was before I truly understood just how much we have to fight for treatment and supplies. And just how many of those battles feel arbitrary and cruel.

Just yesterday there was a discussion in one of my groups about coverage of Zofran (Ondansetron). Ondansetron is a cheap generic, basic anti-emetic and is central to how folks with gastroparesis get through the day. It is one of the very few anti-emetics that does not make folks drowsy. The OTC alternatives are Benadryl and Dramamine, a single dose of either will knock me out for a couple of days. Whereas, I can take as much or as little Ondasetron as I need in a day and easily stay alert.

Our latest insurance company will only fill 18 pills at a time. Although I can refill it until I reach the limit of my Rx. Assuming a reasonable (for me) average of 3 pills a day, that doesn’t even cover a week supply. But it does add a significant treatment burden when I have to renew my meds so often and send David out to the pharmacy to pick them up for me.

In a conversation with folks from around the world, patients everywhere but the US were able to fill their full Rx. For the folks within the US, it varied widely. Some folks could only get 9 pills at a time. One lucky woman is able to get a 90 day supply. But most of us were looking at a max of 30 pills at a time. And that did not represent a full month’s of medication for any of us.

The functionality of our days varies. And sometimes we just don’t have it in us to reorder meds every 3-6 days. That is when we (myself included) start to hoard our meds. Before I take an Ondansetron out of its foil packet, I always assess whether my nausea level warrants the medication. And I often go without because I want to make sure to save them for when I really need them. That is a hard habit to break even when we pay the $25 cash for 30 pills at a time. And that, my friends, is also a Treatment Burden.

To summarize the article on Treatment Burden and work, all too often the Treatment Burden on patients with chronic illnesses makes working extremely difficult. I spend easily a minimum of an hour+ a day on tasks that fall under the rubric of a treatment burden. In fact, after running the last couple of weeks through my head, I can confidently say that I have spent more time dealing with the external logistics of my illness than I have on my feeding and stoma care routines. And those take a couple of hours over the course of the day. And yet, Social Security clearly states that simply having a feeding tube is not enough to make one eligible for Disability benefits.

That kind of crushes me (although I have started my application anyway) because after 2 years on Disability (which counts from the minute the original application is submitted, which in my case was a few months ago) one is automatically eligible for Medicare. Medicare may be a nightmare of bureaucracy, but as a government program, all of their administrative rules, including internal policies, have to be made public. So while navigating it may still be a nightmare, it would at least be a nightmare where I can access the rules of the game and figure out how to work within them. Also, ironically both Medicaid and Medicare and generally more generous with supplies and without additional “cost sharing” or copays.

Last night before bed I was commenting to David that as my nutrition levels increase, the visceral feeling of starvation is fading. And as traumatizing as those memories are, I sometimes need to tap into them to give me the impetus to make yet another phone call where I will inevitably sit on hold forever. And then, when I do manage to talk with a human (I have literally gone through 15 minutes of prompts before finally being put on hold to wait to speak with a human) it inevitably results in me needing to make more phone calls. Because folks, that is my choice. Go back to starving or continue the Sisyphean tasks necessary to keep me fed.

It has been a pretty mediocre week, both emotionally and physically. I continue to have tiny bleeds and the meds they gave me to help heal my stomach make my stomach mucus thick which makes venting air really difficult. And given how much difficulty I have burping these days, venting air through my G tube is pretty important for my comfort level.

My stoma (the hole my tube goes through) continues to be painful. The area around it is sore from the inner bumper pressing against my stomach and abdominal walls. The stoma itself stings and is leaking a little blood. Once again, not enough to be problematic. But enough to make for a cranky Eva. I am very much looking forward February 13th.

In the continuing saga of how our medical system is disintegrating before our very eyes, I had to call the lab about some missing results this week. I am a huge fan of patient portals. Gone are the days when only the doctor could see test results. Since continuity of care is no longer a thing, it is up to me to maintain my medical history so I can track changes and report them as necessary.

My most recent bloodwork had two categories of tests. The ones that come in within 72 hours and the ones that can take a week or two. I noticed that some of the quicker bloodwork results were still pending after 72 hours. Among those were my thyroid results. I have had a bum thyroid since I was 19, so I know how long thyroid blood tests take. I checked the patient portal and there were still open orders for the tests I was still waiting for.

I called the lab and discovered that the reason that the orders were still open was that somehow one of their techs just forgot. They had my blood. They had the orders. They had done some of the tests, but inexplicably, skipped others. Since it was their mistake, they tracked down my blood (rather than me having to go back in for another draw) and ran the remainder of the tests.

For those keeping track, this means that I can’t even assume that my labwork will be completed without my oversight. There is simply no stage of my medical care that I am not personally responsible for making happen.

Speaking of which, It has now been 12 days (7 business days) since my GI changed my nutrition order. Despite calling every few days, my order continues to be “in process with my insurer.” Yesterday I got a slew of calls from my insurer that only stopped when I actually answered the call and went through the prompts (no human was ever involved on their side of the “conversation”) to tell me that my Rx had been approved. Despite their great need to tell me the news, they did fail to tell me what Rx had actually been approved. And they have not updated their portal with the information. Hopefully tomorrow I will be able to get an answer from my supplies company.

If I had not gotten a month of feeding bags from a fellow tubie and bought my formula out of pocket, I would be in dire straights by now. No one in the medical community has acknowledged how expensive and how logistically difficult it is to be a tubie. Once again, I would be lost without my fellow tubies lighting the path for me.

All of the above is why I am such a crankypants today. I can handle the uncertainty of how any given day is going to go. I can handle the unexpectedly significant time commitment it takes to be a tubie, even on days when I feel crappy. I can even handle the nausea, pain and discomfort that come with this disease. But when you add the having to micromanage every single aspect of my care, then it just gets to be too much.

The emotional exhaustion is almost overwhelming. It is the paradox of nutrition. When I was starving, I had no bandwidth for feelings, let alone trying to process them. Now that my nutrition is beginning to increase (I am now just over halfway through my transition to the higher calorie formula) and I have the bandwidth to do more than just get through the day, I am beginning to feel the isolation of this experience.

I am so incredibly fortunate and grateful that I have such loving and supportive friends, family and community. You all buoy me more than you can ever know. You make me feel loved, supported, valued and comforted. And you simply cannot know the emotional weight and exhaustion that comes with this life. It is like living in a TARDIS. I can only show you the outside, but it is so much bigger on the inside.

Fortunately, I am healthy enough that I can do almost all of my own caretaking when it comes to my physical needs. But David lives in the TARDIS with me. He helps sooth my pain, both physical and emotional, all while seeing his own world turned upside down. And as much as I would love to be able to afford him the same comfort he does me, I can only do so limitedly. In part because I only have so much energy and in part because I am the one who turned his life upside down.

The mirror of Little Miss Crankypants is Little Miss Grateful, so I am going to revel in the love and try to make today a little more bearable.

It has been an adventurous week with lots of news, but very little of it is momentous. Just to set your expectations. 😉

To start, I ventured out to get my bloodwork on Tuesday. I walked a mile roundtrip and I came back tired, but not wiped out. This is a serious accomplishment. But my legs weren’t happy with me afterwards. Which pissed me off, because as a native New Yorker, I have, until now, had the ability to go from couch to walking 6+miles without skipping a beat. On the other hand, it did help me realize that I now have enough nutrition to start walking regularly again. Which I started today by walking around the block (.4 miles).

After a couple of weeks of a clear tube, I started seeing tiny amounts of blood in it again. I knew it was not something that would impact my hemoglobin* and that I had an appointment with my GI who put in the tube, so hopefully I could get some answers. Then, Monday night, I was woken by a very sharp pain in my stomach where the inside bumper that keeps the tube from falling is located. Fortunately, my appointment was Tuesday afternoon.

The GI seemed completely uninterested in my bleeds, but I convinced him to take a look when he changed my tube to the kind he likes better. This was a swap that he recommended to me when I got my current tube inserted. This style works great for the initial tube until the stoma heals and the stomach has formed a good adhesion to the abdominal wall. After that has happened (at about 6 weeks) he prefers to switch to the other kind of tube for the longer term. The swap is scheduled for February 13th. We can call it a late birthday gift.

To recap: My current tube is a tube within a tube. The outer tube stays in my stomach so that I can vent air and stomach contents, and then the smaller inside tube goes to my jejunum for my feeds. The better kind of tube has two tubes that are side by side. It also has a soft balloon rather than a hard bumper on the inside. Which, if the bleeds are caused by the bumper rubbing against the stomach wall, a soft balloon would address on its own.

In other news, the backpack I received from the supply company that holds my pump and my feeds is disintegrating after just a couple of months of light use. This backpack is what allows me mobility for the 18+ hours a day that I feed. So it does get a bit of wear and tear. But has only been used outside the house 5 times. There are folks that haul these things to work, to pick up kids and to run errands, so comparatively, mine really has only seen light use.

Anyway, there are a bunch of crafters on Etsy who modify basically any backpack for tube feeding. It mostly involves adding grommets for tubes and adding something to hold the feed bags, sometimes something as simple as a carabiner. Unfortunately for me, most of those backpacks are designed for a different, much smaller pump than I have. It is the standard pump for kids and a lot of these backpacks are kid oriented. Which makes me absolutely want them (there were a couple of awesome dinosaur ones!), but alas, it is not to be.

I had some very specific modifications in mind and the woman who had experience with Kangaroo pumps happened to be in the UK. I discussed the changes with the crafter and she was happy to make the modifications for no additional charge. And its not like she is making big bucks. This modified backpack ran me all of $75. Which is why I am taking this moment to appreciate all of the creative problem solvers in the tubie community who share their imaginative solutions at extremely reasonable prices. It really is a very generous community.

Anyway, I have been eagerly watching the tracking information on my new backpack as it managed to get checked in 4 consecutive days in the UK without apparently moving an inch. But it has finally reached the US and cleared customs in New Jersey today! As you can see, I lead a very exciting life! 😆

*My bloodwork has confirmed that my hemoglobin is at a very good level.

This was a nice, quiet week. I had a bunch of genuine C days in a row, something that hasn’t happened since my nutrition stalled in mid-December. But as of Friday, I am now back to truly increasing my nutrition by 50-100ml every 3 days or so with the higher calorie formula.

I continue to feel the improvements in my brain capacity and overall energy. I am back to being able to read long-form articles, which I am enjoying. Although given the state of the world, those articles tend to be depressing, but that is another issue.

My increased nutrition is also helping me disambiguate which symptoms were from malnutrition and which are from gastroparesis. I was fairly warned that the tube would not alleviate any of my gastroparesis symptoms and that is indeed true. After a spate of C days, I started feeling crappy again. And it turns out that the needing to lay down with minimal external stimulation is a gastroparesis thing. It is like someone turns the nausea setting up to 11 and my body responds by needing to kinda shut down for a bit.

This will obviously make future planning difficult moving forward. I know that I can push through tough days when I need to, albeit at a cost. But as the first ER visit showed, that cost can be mitigated by whatever resilience I have built up with my increased nutrition.

David and I have started discussing the possibility of travel again. We aren’t quite ready to do it yet, but we are ready to start thinking about what ducks would need to be in a row to make travel happen. For example, given the recent airline delay fiascos, what is the minimal amount of formula that I would be comfortable having in my carry on? TSA rules say that I could only bring enough formula for the travel day. But if I got stuck somewhere or my checked luggage got lost, I would need two shipping days to get replacement formula to me.

In addition to travel, there are things that I would like to do once I get to full nutrition and have energy again. Covid-willing, I would love to get to get back to the theater. The challenge is that most theater tickets need to be bought in advance and I can’t predict how I will actually feel the day of the show. This all comes back to my resilience. If I feel like I can push through the crappiness and still enjoy the show, I will do it. But if I know that I will be too sick to appreciate anything besides proximity to a cat, I will just have to reconcile myself to the cost of that ticket being yet another expense related to gastroparesis.

I recently saw a parenting meme recently that really resonated with me about RSVP options. The original 3rd option was a Yes, assuming none of the kids get sick and we have to cancel at the last moment. This is my version:
* Yes
* No
* Hopefully? Assuming that I feel well enough to enjoy whatever the event is.

This coming week, I have an appointment with Dr. Kumta, the doctor who put in my tube. Since I have not seen any more blood since my tube was adjusted at the ER, I am going to assume that issue has been resolved. I do intent to ask him about scheduling replacing my tube with the one he likes better since I am now almost 8 weeks out. Unlike the first time, I am in no rush to get the new tube. Etisarap may have some logistical challenges (nothing that can’t be solved with tape), but I still love her dearly.

The replacement tube will still be Etisarap. I am following the Dr. Who/grandfather’s axe theory of naming. Even if she has been wholly replaced, she will always be Etisarap to me.

According to Schoolhouse Rock, 3 is a magic number. But for my body, 1,000 seems to be a magic number.

If you recall, I had hit the 1K calorie threshold before, but it was only briefly and with a fair amount of misery. I had to drop back to let my jejunum recover. Then came two ER visits. I rebounded from the first one impressively well. The second one, not so much.

I was frustrated because even though my stoma was healing nicely from the adjustment and there was no more blood in my tube, I was stuck with minimal energy and needing lay downs. I knew that I could bounce back if I could up my nutrition. However, I couldn’t comfortably increase the volume in any meaningful way in the short term, so I felt stuck.

The nutritionist at the supply company ordered me a sample case of a higher calorie formula. 1.5 calories per ml as opposed to the 1.0 calorie per ml formula that I was on. I tried substituting 100ml of the higher calorie formula for the lower, keeping the overall volume the same. I knew from experience that I would need 3 days to ascertain whether my body would tolerate the more concentrated formula.

Long story short, it did. I do need the 3 day adjustment time, but I am once again able to slowly ratchet up my nutrition. And just a few days after I hit the magic 1K threshold, something auspicious happened.

Our adventure was tiring, but not so tiring that I needed a nap afterwards. Nor did I need the nap the day after. And yesterday my wonky brain came back and I surprised myself by commenting on public policy while listening to NPR. Both things that were unimaginable just last week. That burst did tire me out, but it is so nice to see sparks of Me begin to emerge. I know that I still have a long way to go, but the slow and steady progress is definitely buoying. Tonight I will continue the march forward by replacing 250ml of the 1.0 with the 1.5.

I had an appointment with my GI this morning, and he is fully behind my plan to slowly transition from the 1.0 to the 1.5. And only go back to futzing with the speed after I am at my nutritional goal. We both have concerns about how to put this into an order that the supplier can comprehend, so I have asked my nutritionist to help the doctor put the order together. He even suggested that she call him directly, something that I am completely behind. Since I can order the formula directly, I even have a backup plan if the order goes awry.

Since I have long hair, I can really see how two years of malnutrition has made my once thick hair very fine. But before I could ask my doctor about doing some nutritional bloodwork on me, he recommended it. I have to go to the lab to get blood drawn for my thyroid test, so I can just get this drawn at the same time.

Right now, we think the nurses at the local hospital are on strike (nurses at Mount Sinai are definitely on strike, we just aren’t sure if the nurses at the local Mount Sinai are part of the same union) and my bloodwork isn’t urgent, so I will not cross the picket line for it. If the strike goes into next week, I will just find another lab to get my blood drawn.

It has been several days since the space between the bumpers on my tube were increased and all signs point to that having been the issue. I have not vented any blood since Saturday, and that was expected after the “adjustment.” But I remain in pain, although it is decreasing with time, and David and I both remain physically and emotionally exhausted.

There was a decision at my first visit to the ER made by my GI’s team on December 23rd not to do a tube adjustment. No one with experience with a G-J tube even bothered to come down and take a look at me. They just monitored my hemoglobin.

A week and several phone calls later, the nurse practitioner sent me back to the ER. This time my GI’s office started paying some attention. Several GI’s came downstairs to take a look at me. The first, presumably a resident, took one look at my tube and said that it was too tight. That was all it took. A single glance. He then proceeded to start pulling the tube through my stomach to give the outer bumper more space. If you are easily ooged out, just skip the next two paragraphs.

Some details about how the tube stays in place. There is an inflated balloon on the inside that keeps the tube from just falling out. The tube is also stabilized by adhesions that my body attached to it as part of the healing process. When he pulled that tube, it forced the balloon against my stomach and abdominal walls with a great deal of pressure. If you recall, my abdomen is incredibly sensitive to touch. That alone brought tears to my eyes.

But her wasn’t able to get the tube to budge by just pulling. He had to brace his hand against my abdomen and tug. Hard. Those adhesions were really strong and he had to rip them to get the tube to budge. He apologized for making me “uncomfortable” but it seemingly never occurred to him to use some lidocaine to make the experience less painful.

I was really glad that David was there to listen for me, because I still have no idea what he said afterwards. All I could do was breathe through the pain. A while later, another GI (presumably an attending because she had two interns following her around like baby ducklings) came down and took a look. She was clear that she was a general GI and not part of my doctor’s team, but even she commented that she would not want my tube to be any tighter than it was at that moment. She went back upstairs, conferred with my doctor’s team and that was when they decided to release me.

It has been a serious relief not to feel compelled to check my tube constantly for signs of blood and my anxiety levels have dropped considerably. But while I bounced back surprisingly quickly from my first ER visit, I really didn’t have the reserves to do it a second time. And I haven’t been able to increase my feeds from 51ml/hour to 52ml/hour because I just don’t have it in me. I was going to try to do it anyway, but David wisely talked me out of it. Better to stay put for a little longer than to have to drop back to 50ml/hour.

The nutritionist from the supply company ordered a sample case of the 1.5 peptide formula for me to try. This formula has a higher calorie per volume, so if I switch to this, I can bump up my nutrition without having to increase my pump speed. This is the same formula that the nutritionist in his office originally recommended for me, but he went with the lower calorie option instead. I am hoping to convince him to let me switch at our appointment on January 10th.

Because things can never be simple, Saturday morning Dancer started vomiting pink liquid. He was clearly uncomfortable and nauseated all day. Uncharacteristically, Dancer slept next to David and apparently was in such a deep sleep that David nudged him a few times to make sure that he was still breathing. This is particularly noteworthy because Dancer has a perpetually stuffed nose and usually snores.

The deep sleep seems to have done the trick. He was feeling noticeably better on Sunday by the time he was able to see the vet. They gave him a strong anti emetic and a few days Rx of med that coats his stomach (it was a med that I tried too, but it did nothing for me) and he seems to be doing fine.

They also put him on an Rx wet food for a few days. Of course Xena Malka wanted some, so David just bought her some Friskies so she can eat her own wet food while Dancer eats his. Unfortunately, our way too skinny Nom Nom has no interest in wet food. Well, unfortunately for us. Xena Malka is more than happy to not have to share with her brother.