Month: May 2023

Life with a chronic illness is incredibly unpredictable and some days it feels like my life is a game show. I never know what to expect until it happens. I can feel good, crappy, horrible and back all in a single day. It makes planning for anything really challenging.

It has been a really bad 3+ weeks. My pain and nausea have gotten progressively worse. My stomach feels like ground up hamburger and is bleeding despite the usual protective meds. As the nurse told me in the ED at my last visit, it is not venous bleeding, so I am not at risk of bleeding out (which would have been great had someone told us that at our first ED adventures last December, but whatever). This bleeding is more tissue. So definitively indicative of a problem, but apparently not worth anyone’s attention.

My GI is still essentially ghosting me. The essentially is that he did finally respond to my portal message, and suggested, rather vaguely, adjusting some meds (as in “we might want to consider X” and not “please try doing X”). But he continued to be unhelpful in any other way.

I did meet with the palliative care nurse, Alex and he has, thankfully, taken over my pain and nausea management. We basically followed my GI’s suggestions, which made it easy to start. But we also discussed other options and their various pros and cons for the future.

Funny aside, I noticed that Alex had an accent and asked him where it was from. He swore he had no accent, but it was there. Something about his inflection. Turns out he is a Soviet Jew that emigrated here when he was 4 after the fall of Soviet Union. I grew up around enough Soviet Jews that I am intimately familiar the accent of a NYC kid who grew up surrounded by Russian speakers. Turns out he lives just a few blocks from where I grew up. Sometimes I forget just how small a town NYC can be at times.

Lately, Xena Malka has been taking to waking me up around 5 or 6am when she starts to see me start squirming in pain. I give her some scratchies while I assess whether my misery is worth getting up and taking my pills and starting my flush regimen. Usually, I can assuage my pain enough with my heating pad that I can go back to sleep for another hour. This week, 9am has generally been the tipping point.

This morning I slept through until 8. I gave Xena Malka her scratchies and got up. Not because I was in horrible pain, but because I was hungry. When I am at my stable feed, hunger and I really aren’t conversant. I get a little bit of anticipatory hunger when David orders food and I know that I get my few bites of something tasty. But this was the classic, “I need nutrition” call.

When I feel really bad, it doesn’t matter how low my nutrition is. Any possible feelings of hunger get drowned out by the pain and nausea. Making feeling hungry a strange and unusual feeling, especially first thing in the morning.

I was feeling good enough that I expanded my morning 60ml flush (which includes one of the pain meds that I take through my J tube), to include 30ml of electrolytes. That may not sound like much, but when you are used to every ml towards maintaining adequate hydration being a victory, increasing one’s fluid intake so freely is worthy of note.

I was still thirsty after my 60ml of juice I took my pills with so I grabbed another 60ml of delicious watermelon juice, 2 mango avocado rolls, a heap of pickled ginger and a forkful of seaweed salad and went into the living room to start my flush. I cannot convey how extravagant I felt with this veritable feast in front of me.

The morning progressed well. The flush was uncomfortable, but not painful, which was a lovely improvement. The food was tasty and I still felt well enough afterwards to start this blog post. But then, the wheel spun and suddenly I didn’t feel so great anymore. But even that “not so great” was an improvement on how I have felt the past few weeks. So I took a 3 hour nap and I have regained my equilibrium enough to finish this post.

I am assuming that I can credit my adjusted meds for this improvement. And I am frustrated that I have had to wait so long to get this level of care. But the bottom line is that whatever is going on with me is getting progressively worse and that my pain meds are just barely keeping up with them. Even today, feeling better than I have in weeks, I do not feel like I can comfortably start increasing my feed rate. I am tired of this cat and mouse game and I am ready for some answers. And the only one who can help me get them is my GI.

One of the many benefits of having a Complex Care Coordinator is having someone who can persistently advocate for me, even when I am feeling like shit. And it is paying off.

Yesterday, after my GI continued to ignore my pleas for attention on the portal, I got a call back from the same on call doctor I spoke with last week. He was empathetic and provided clear instructions on the parameters for hydration that would keep me out of the ED. Parameters that we (by which I mean, largely David) have carefully abided by, keeping me appropriately enough hydrated to get to stay at home.

This week he and I had a good conversation about his limitations as an on call doctor, which, like the ED, are just to stabilize a patient until their actual doctor can treat them. Nevertheless, he really listened to my frustrations with my GI. He did ask the obvious question, if I was so frustrated with my GI, why didn’t I just switch to any of the many other GIs in NYC. I told him that I had appointments with 3 of them, but that the soonest I could get in was mid-July.

That was when he offered to send my GI a message on my behalf suggesting that I needed some additional attention. This is going to be hard on my GI’s ego and there may be some blowback on me. But I am relieved nevertheless. I finally felt like my frustration and pain had been validated and someone within the practice was finally up for advocating on my behalf. But this isn’t over. Not until my GI actually starts addressing the core issues.

In other good news, I think/hope my pump woes may be over. A woman in one of my tube feeding groups was selling her pump for a very reasonable price. She bought it brand new and had only used it for 2 months before a stomach surgery allowed for the removal of her feeding tube.

The pump has arrived and is currently charging. The test is when it gets put into play for tonight’s feed. Assuming all goes well, and I have no reason to believe otherwise, I will have a working pump of my very own. My current working pump will become my backup. And it will cease to matter that my official backup pump doesn’t work properly at all. This has been a low priority worry the past few weeks, but I am relieved to be able to cross something off of the list.

These past few weeks months years have been very hard on David. Tracking my meds, etc., does not play to his strengths. And the strain of the tightrope walk of whether my pain will get bad enough to warrant an ED visit (and we did get uncomfortably close to that happening just a couple of nights ago), or whether I will be up for hitting my hydration goals, are definitely wearing on him. But even he is feeling my good day.

His guard is down enough that he slept in this morning and just went down for a nap. David is not a napper by nature, so if he is napping, it is because he is truly exhausted. And I am glad that I can give him some time to recover. Chronic illness is a team sport that involves everyone you live with, whether they want to or not. Fortunately, 24 years ago I chose wisely. I could not imagine going through this without David. Even as I truly wish I could spare him all of the crappy chaos that is my life right now.

It has been over a week since I was discharged from the hospital, and I still have no answers. Fact is, my GI doesn’t seem particularly interested in the questions. Or much of anything really. I spent Thursday and Friday trying to get some answers from my GI about minimal hydration levels and when to know that I needed to go to the ED for hydration. I say “I,” but what I really meant was my complex care coordinator calling my GI’s office over and over again, trying to get a call back or an answer.

In the interim, she also tried to get me a home hydration order. But I am apparently too medically complex for someone to just show up with a bag of salty water for me. There needs to be blood work. And I just didn’t have the energy to face an ED again. But Friday night, at about 6:30pm (remember, we had been trying since Thursday morning to get an answer) the on-call doctor came through for us. He said, that if I could get 500-1,000ml in me a day, I could stay home. Thus kicked off Operation Hydrate Eva. It was not always pleasant, and it turns out that Pedialyte popsicles don’t always taste magical when you are not overheated and overtired and stuck in an ED. But we did it!

And we are still exhausted. I am increasingly able to take back some responsibility for my care. But David is far from off the hook. The anxiety and uncertainty of not knowing what is going on is absolutely draining. I have been able to maintain an increase in my feeds. So I am now getting <800 calories a day as opposed to <500 calories a day. But we are stalled there. And I don’t have 2 months of this in me. I have already lost 10lbs in almost 2 weeks.

Last night was the first night in a week that I didn’t take any benadryl at bedtime. I slept until 7:30am when the pain woke me up. I took a Tylenol and eventually was able to doze off again. But I haven’t really been able to get comfortable today. I have been doing my best to distract myself my from my discomfort. Thus this blog post. Unfortunately, the flip side of these energy intense distractions is only being able to pet a cat or read the book titles on the bookcase opposite me for a while afterwards because as much as I appreciate the break from the misery, they do exhaust me.

Today, my complex care coordinator reached out to a palliative care provider. A nurse practitioner whose sole purpose is to help manage pain and nausea. He works in concert with the medical team, leaving treatment to them, but taking responsibility for comfort. Something treatment teams are notoriously poor at. My hope is that if we can manage my pain, I may be able to increase my feeds, even without addressing whatever the overarching issue is. This particular palliative care provider doesn’t normally accept patients with gastroparesis unless it is secondary to something else. But he agreed to at least have a conversation with me.

In the positive news column, my gastroparesis has done something that David had failed to do on his own despite 24 years of trying. It turned me into a sportsball baseball fan. It turns out that baseball is absolutely what living with a chronic illness calls for. At least in my case. And despite being a native New Yorker and living in Queens, I am a Red Sox fan by marriage and therefore a red Sox fan*. And as long as that means that I loathe the Yankees with a deep and abiding ferver, I think that makes it ok with my family of origin.

*I may officially be a Red Sox Fan, but I reserve the right to wear my Portland Pickles and my Exploding Whale jersey to sportsball baseball games.

David is still working on the story of my adventures as an inpatient, but I keep distracting him with needing someone compos mentis to track my meds, bring me things (and not just because I am under a cat, but because as you will soon read, malnutrition has left me a bit wobbly) and the like. Instead I am going with a non-linear approach and sharing today’s update now.

I am home and the pain is mostly being managed, by which I mean that I can tune it out if I am adequately distracted. I am still only able to feed at half my normal rate in a drugged sleep (benadryl being the drug of choice), which we have dubbed “benadryl naps.” That gives me a grand total of 470 calories a day and a bit less than 8oz of “free water” towards my hydration.

I am doing my best to hydrate orally with baby popsicles (2oz) of either juice or Gatorade and the occasional 1oz of juice with my meds. So maybe a generous 6oz/day. But David got me delicious papaya and passion fruit juices from the local market, which is a serious bonus for my tastebuds, who are feeling kinda neglected. I am not so much craving food as I am flavors.

We have gotten my nausea back under enough control with access to my primary motility drug and medical marijuana that I am no longer venting more fluid than I am taking in. And I have gone back to eating in 3 bite increments every few hours.

My doctor is “unconcerned” about my nutrition or hydration. My first appointment with a new GI is July 17th. Although, my complex care coordinator has set up a total of 4 appointments with motility specialists in 3 states and I am on all of their cancellation lists, so there is some hope for something sooner.

The following is Part I of the account of the last week and a half. The writer is David, because if we were waiting for Eva to be up for writing, it might be a while.

On Wednesday, May 3, Eva’s nausea ramped up to intolerable levels. She lives with constant nausea, so when she says it’s bad, it’s pretty awful. She could no longer take in liquid orally. At the time, she was still able to tolerate some jello and tiny fruit juice popsicles. 

At the same time, she was starting to vent large quantities of fluid through her G-tube (gastric-tube, i.e., from the stomach). She vented roughly 150 ml in a couple of hours. This is very unusual, but not a unique occurrence for Eva.  

By the next day, her J tube (jejunum-tube, the beginning of the small intestine) wanted in on the action and was insisting on venting small amounts of bile. This is a unique occurrence. Eva was using medical marijuana, Zofran, ginger and a scopolamine patch to try to control nausea, to no avail. 

As an aside, these events of 10 days ago are so hazy in either of our minds, that I’m looking back to text chains of conversations with our complex care coordinator to reconstruct things. It has been a long week and a half.

Eva’s current GI was unavailable for conversations on this Thursday.

On Friday, Eva’s GI is off. But we did manage to have a conversation with the on call GI at his practice, who pulled Eva off the scopolamine and put her on a dose of Ativan. 

At this point, Eva is feeling her electrolytes getting out of whack. One of the issues around gastroparesis is that the body processes salt differently and requires much more of it. Eva normally uses a packet of electrolytes for high intensity athletes daily. But she also requires regular hydration because the free water available in her formula is limited, and what she can drink is extremely limited, and she wasn’t getting enough extra in her flushes (syringes of water used to clear the j-tube every four hours or so during awake hours). This is about to become relevant. 

Saturday, things are getting worse. Eva is feeling “wonky and woozy.” Electrolytes are out of balance, she is dehydrated. We clearly need to get Eva some IV hydration. 

This seems like something simple to do. There are spas that offer IV hydration. We figure we will just show up at an urgent care around the corner and get this dealt with. No big deal. 

Big deal. Apparently urgent care doesn’t do hydration. Apparently the spas aren’t as set up to do this as their advertising claims. The complex care coordinators are not wild about us having a nurse come to the house to administer hydration because they’d kind of like testing available, just in case. This means . . . off to the hospital. 

But remember, this isn’t a big deal, we just need a bag of saline water to flow into Eva’s veins. We were originally looking to do this at an urgent care. So, instead of heading into Manhattan to a serious hospital, we head to a minor hospital in Queens (albeit one in the same medical system that we are moving our care to–NY Presbyterian). 

We arrive around two. We sit in the waiting area. For hours. Until around 5. Which sort of makes sense, because Eva doesn’t present as a particularly urgent case. Then they bring us into the treatment areas. 

We explain to a PA (physician’s assistant) what the issue is (nausea, venting through G tube and a bit through J tube, dehydration. The PA is clearly confused. We realize the PA has no idea what a GJ tube is. We educate the PA (Eva feeds through the J tube, vents through the G tube . . .).

By around 6:00, maybe, we are talking with an attending. Who isn’t quite sure what to do. She’s willing to do the saline and all, but she wants to know what normally happens when we come in for treatment. Should she be admitting Eva for in-patient care? Fun fact: this is our first time on this rodeo–we don’t know what we need. That’s why she’s the doctor. This is when we realize that there is no situation when it’s a good idea to take Eva to a less than major hospital. Nothing with Eva’s health is ever simple.

They finally get her some IV Zofran for the nausea and a hydration bag at around 7:00 PM. Five hours after we arrived at the ED (Emergency Department). 

IV Zofran is Eva’s favorite drug. Like ever. It is magic for her. It makes the nausea go away. Every time. Until now. It does nothing this time. 

By 9:00 PM the fluid has fully entered Eva’s system and the off kilter, woozy feeling has retreated. They give Eva another dose of IV Zofran and send us home. The second dose reduces the nausea to a tolerable but still pretty significant level. Eva and I are beginning to have intimations that this may turn into a “thing

For those keeping track, feeding pump #8 just failed. This one cannot hold a charge adequately. The battery life of my feeding pump should be 18 hours. that gives me full mobility without having to be tethered to a power cord. But pump #8 will only hold 4 1/2 hours of charge, leaving me largely tethered to an outlet. I have called the supplier and pump #9 should arrive Monday.

My fabulous Complex Care Coordinator has found a way for my insurance company to buy me a brand new pump. It requires some minor hoop jumping, but they are on that. My outstanding question is what happens if my brand new pump breaks? After all, shit does happen. So she is looking into that for me too.

In the much less good news department, I got horribly, horribly nauseated Wednesday evening. Even when I am fully medicated, I live with an underlying degree of nausea. It is just my reality. So when I say that my nausea on Wednesday night hit a 9+, I want you to understand just how sick I felt.

I cannot vomit, no matter how badly I want to. My stomach just doesn’t do reverse peristalsis (or even regular peristalsis, which is why I have my beloved Etisarap feeding tube). But on Wednesday, I learned that I can “vomit” out of my G tube. What that entails is me opening up my G tube and my stomach forcefully pushing out whatever stomach contents are in there. Usually a combination of water and bile.

I have regularly have what I call “Angry Stomach.” I feel pressure in my G tube and opening it and letting it drain a bit makes me feel more comfortable. I usually lose just a few milliliters of precious liquid, not enough to dehydrate me.

Wednesday evening was a completely different ballgame. I had Angry Stomach set to 11. And the output just kept going and going. I have no idea where all the liquid was coming from since I have been skirting the edge of adequate hydration levels for the past couple of weeks, but somehow my body just kept going. I drained 150ml of fluid in about 2 hours. Then I went to bed and when I woke up I had drained another 150ml or so.

Side note, one of my super powers is now “vomiting” while I sleep. All it takes is connecting my G tube to a drainage bag and my autonomic nervous system does the rest.

I relayed my tale of woe to my Complex Care Coordinator who then set about getting me in to see my GI. But my GI’s office is completely non-responsive and despite her calling several times a day, it wasn’t until early this afternoon (Friday) that she got a GI on the phone. My GI doesn’t work on Fridays, so she had to really push to get a covering GI to call me.

In between, her medical director was really concerned about my hydration and electrolyte levels and was hoping to at least get those things addressed. Once again, since she couldn’t get a hold of a doctor until this afternoon, the crisis had mostly passed.

I woke up very early this morning with a ranging dehydration headache. But apparently even my body knows when not to put up a fight and I was able to drink about 6oz of seltzer with gatorade first thing after getting up. But my electrolytes are clearly off. I remember the wibbly wobbly feeling from before I started using my high test electrolytes.

The doctor was completely unconcerned about my hydration levels or my electrolytes. In fact, he was downright dismissive about me mentioning them. He also tried to (poorly) tubesplain me, so clearly he was talking out of his ass. I did confirm that it was safe to use a second packet of my uber electrolytes, which I just flushed into my tube. And I am already feeling much better, so this was clearly a case of Eva 1, Doctor 0.

The on-call doctor blamed the scopolamine patches for my Wednesday evening troubles. It was my second patch, and I had no ill effects from the first one. But he suggested I remove it anyway. Apparently my regular GI was also concerned about the scopolamine. Not that he bothered to raise any concerns when I originally asked for the Rx because my nausea management protocol was simply not cutting it anymore. He just told me to make an appointment, which isn’t until the 15th of May.

I asked the on-call doctor what I should do for nausea management because Zofran is only working for a couple of hours, leaving me miserable for a couple of hours before I get my next dose. At first he shrugged (this was a phone call, but I could hear his complete lack of concern in his voice). He then suggested Ativan for the nausea. When I hesitated a bit, he just pushed the Ativan harder. I have to wonder if he selected an anti-anxiety med to calm down this “obviously hysterical” patient. Regardless, I am not one to dismiss possible nausea management tools, so David will go pick up my Rx and I will give it a try. As David says at the very least I won’t be anxious about my nausea.

My Complex Care Coordinator is also busily collecting my records for a future visit to Johns Hopkins Motility Center which is one of the top two motility centers in the US. The second is at the Mayo Clinic in Rochester MN. She currently has all of my medical records except from my current GI. But she just keeps calling them and eventually she will succeed. I will obviously know once more after the folks at Johns Hopkins have had a chance to review my records.

I cannot wait to jettison my current GI in favor of one whose experience includes both motility issues and enteral nutrition. In the meanwhile, I will make do with what I have until September 5th.