Eva's Gastroparedic Adventure

Mary, my complex care coordinator, has been working hard to get me seen at the Mayo Clinic in Rochester, MN. They are the best motility center in the country. She was making great progress. We had gotten me to the point where I had been assigned a doctor and they were beginning to send me travel information. And then this morning, the axe dropped. I got a message saying that after reviewing my extensive records, there was no test, or treatment that they could offer me.

I was disappointed, of course, but it makes sense. My team of doctors from Vermont, Stony Brook and NYC, all ran all of the appropriate tests to rule everything else out first. Ultimately, I was diagnosed with a Smart Pill, which is the state of the art test. And my results showed that I have severe gastroparesis. Severe enough, that even if you cut my transport time in half, I would still have severe gastroparesis. And as there is no treatment or cure for gastroparesis, there is nothing more that they could do for me than is currently being done

In other words, I just got a free second opinion from the Mayo Clinic confirming my diagnosis is correct. And that, as much as there is no treatment for gastroparesis. only symptom management, he has handled that correctly too. Thus is life with a rare, incurable disease. Welcome to the frustration that is my existence.

Yes, there are some marginal interventions available for gastroparesis, like a gastric stimulator, or surgery to prop open your pyloris valve. However, neither would make a difference in my situation. They don’t tend to work well in cases of idiopathic gastroparesis like I have.

This is not the end. I see it as simply a confirmation of my diagnosis. Moving forward my goal continues to be on improving my quality of life. I still have my slew of GI appointments on my calendar to help me address my acute misery and feeding issues.

Today is a day filled with feelings, so that is what today’s post is all about. Something is working. Either the increased pain meds or the antibiotic or both. I am not comfortable, but nor am I am in pain. At least not when the meds are in full effect. There is still some pain as it nears time to re-up. Regardless, I will happily take discomfort over pain.

When browsing through chronic illness shirts and stickers–hey, a girl has got to have her hobbies– I see a lot of “warrior” language. Let it be known here that I am not a gastroparesis warrior. I simply don’t have that kind of energy.

I have a pin on my backpack that says “being strong was never optional.” I have no choice but to be strong. Literally. When I felt myself beginning to die from malnutrition many months ago, I felt a literal compulsion to stay alive. That is when I knew that I no longer had a choice but to put everything I had, ever last iota of energy available, towards staying alive.

And that strength made me effective, as my complex care coordinator continues to remind me. She continues to be impressed with how well I navigated arcane bureaucracies, intransigent gatekeepers and even incommunicative doctors . And that means a lot coming from someone who does this professionally.

But that strength comes at a steep cost. And I am fully and deeply aware of how privileged I am to have someone like Mary to take the reigns. Because I honestly am not sure that I could muster the kind of energy I would need to take over that coordination right now. I am just so exhausted every day. Exhausted by malnutrition stretching on over a month, exhaustion from my pain and exhaustion from a complex and confining medication regimen.

I loved my excursion this past weekend. But it also wiped me out. We, by which I mean mostly David, shepherded my energy well. Reminding me that the more I walked enroute to the second festival, the less energy I would have at the festival itself. David was right. I spent my energy exactly where I wanted it and had a marvelous time doing so. But I haven’t had the energy to even leave the apartment since. And I probably won’t for another day or so.

I am taking a break from watching The Tony Awards to write this. I had a little meltdown because I realized that even with my transport chair, I do not have the energy to see any kind of theater. Not when a stroll through the park and a couple of festivals wipe me out for days.

But, I have a much anticipated appointment with a GI in exactly a week. And she has the experience to help me up my nutrition. So I am actually feeling optimistic, even if it doesn’t always feel like it. There is just a lot for me to reconcile on a daily basis. And that takes a lot of my very meager energy.

Yes, I am strong as I need to be. And right now, barring any unforeseen disasters, all of my strength is needed to simply getting myself through the day.

For the first time in a couple of days, I don’t have an air quality warning on my phone. But yesterday, the air was orange and we had an air quality warning over 320. But we have two air filters we run constantly, and we did ok with our windows closed.

The air quality is supposed to get bad again tomorrow and through the weekend, which may put the kabosh on our planned outing to the Astoria Park fair and the inaugural outing of my transport chair. But that is just life during the apocalypse.

In other, better news, I had an appointment with my GI today and he actually stepped up to the plate and went somewhere useful. Given how much pain I am in despite being so heavily medicated, it was about time.

He suggested that I may have SIBO (small intestinal bacterial overgrowth). I tested negative for it almost exactly a year ago. But I am at high risk for SIBO given my gastroparesis and less-than- stellar pyloric valve (the valve between my stomach and small intestines). The symptoms match and I agree that it is a perfectly reasonable hypothesis.

Rather than taking the time to test for SIBO, he is going with a presumptive diagnosis and has prescribed antibiotics. And that is where the fun comes in. The antibiotics are expensive ($3K) without insurance, and require pre-authorization. I emailed the practice and are waiting for them to get me my pre-auth. But it may be a day or two before I actually get my mitts on my new meds.

The GI did, finally, when pushed, acknowledge my need for nutrition when he said that if we didn’t see an improvement of my symptoms within a “reasonable time,” after starting the antibiotic, then the next step would be TPN (IV feeding).

I am feeling positive because that “reasonable time” frame coincides with my appointment on June 20th with the GI who heads the enteral nutrition team at NYU Langone. Either we will have addressed the issue and the new GI can guide me as I increase my current tube feed rate or she can take whatever steps are appropriate to restore my nutritional status to something more sustainable.

I am going from second hand reports here (aka David), but my cognitive abilities are noticeably slipping from a combination of malnutrition and over-medication. And I can’t say I disagree with him. I am well past ready to get my nutrition, hydration and electrolyte situation truly assessed by someone who knows what they are doing and cares how I am doing.

I woke up an hour earlier than usual today, but I didn’t want to mess with my medication schedule. This resulted in a tough afternoon where I woke up from a too hot nap in a fair amount of pain. To say I was grumpy would be an understatement.

I woke up to a text from a friend. Actually, she is more than that, she is a member of my village. As are her spouse and kids. And her kids are both amazing. And one of them, her son, was born to be a rockstar.

When he was a younger kid, I wanna say middle school-ish, but my sense of time is all whacked out. Anyway, the school had an entrepreneurship fair. And each of the kids got a wad of “cash” to spend as they wanted. He put on a show and made serious bank. The kids could have spent their money at any of the stalls, but the experience he provided them was what moved them more than anything else. And it was an amazing performance. I would have paid him too.

Anyway, he is now 16 and a damn fine guitarist. He has put in the time, the blood, sweat and tears. This has not been an easy journey for him. Or his parents. But he has been invited to audition for a band’s national tour. And I know that however this audition turns out, I am watching the beginning of a kick-ass musicians’s career. Because he has the talent and the drive and other musicians are seeing it too. And I can barely contain the pride I feel for this kid.

Ok, back to me. I was honestly buoyed enough by that to start feeling better. Then I get a call from a GI’s office to schedule an appointment on JUNE 20th. a GI appointment with someone besides my lousy doctor this month.

But wait, there’s more. This GI is also the head of NYU Langone’s enteral access team. So she specializes in feeding tubes and nutrition. She is absolutely the right GI for me right now. And honestly, my shoulders dropped in relief from tension I’ve been holding for a month. I don’t have to make it all of the way to July before I can get some help. Hell, it is less than 3 weeks away. I can totally make it until then.

Anyway, just some good news that I couldn’t wait to share.

So yeah, my GI is pissed off and lying to me (poorly), but I am feeling relatively good thanks to my support team. My palliative nurse is doing a good job managing my pain and nausea, Mary, my Complex Care Coordinator is working her magic and David been able to shift his attention to enjoying more fun things.

When I say that my pain is managed, I mean specifically, as long as I am not ingesting anything orally or via tube. This is a boon, because previously, I was moaning and crying in pain much of the time. But now, I am only varying degrees of uncomfortable when I do things like flush, feed or drink. And I only have pain when I increase the rate of my feed.

The pain management does allow me to get at least of liter of hydration a day with reasonable comfort (the variance is mostly meds coming up to full effectiveness or beginning to wear off). This we now know, thanks to a kind and communicative on-call doctor, is enough to keep me out of the ED. Which alone, has done wonders to help my healing

I have tried, twice, to increase the rate of my feed, and failed both times. My GI just increased my pain meds, although I cannot start on the increase yet because it is a controlled substance and I increased that pain med too recently. I am perfectly ok with this delay, because I am already at my peak tolerance for the side effects. And honestly, I don’t expect it will make much of a difference at this point. I think it is time to stop just throwing meds at the problem and to start trying to figure out what is going on. And increase my nutrition. That one is huge.

I have been stuck at 800 calories a day for about a month now. I do try to supplement my feed as much as possible. I only drink juice. I supplement my hydration with Ben & Jerry’s. I eat cotton candy. This last one is cool and was a tip passed on to me by a friend who was on parenteral nutrition (IV) for almost 2 decades. Your stomach doesn’t see cotton candy as food. It is just spun sugar and super easy to digest. It is just like swallowing saliva.

Well, that is mostly true. Lots of swallowing, including the hyper-salivation that comes with nausea, triggers my digestive system pain. So, I even have limits to my cotton candy. But nevertheless, it remains the easiest thing for me to ingest.

My point being, that I am doing everything in my power to increase my caloric intake. But even Ben & Jerry’s calories are negligible in 30-60ml increments. The bottom line is that I am starving and have been doing so for a month now.

I have lost 18lbs to date. Which is exactly how much I gained from my feeding tube. I mentioned this to my GI in terms of asking whether it was now time to consider TPN (IV feeding). Before you read his response, you should know that the subject of the email he was responding to was “Significant weight loss” and that in that very same email, I had made clear that my hydration had stabilized and I was solely concerned about my nutrition:

“As far as parenteral (IV) nutrition – if things have not improved at all over the past few days, and you are not making much urine at all, then it can be considered. It would likely need initiation as an inpatient, in order to get the hardware, care and delivery of feeds initiated, etc. Not likely a quick process. Willing?”

Clearly he needs to improve his reading comprehension skills. He is also clearly pretty damn dead set again getting me my nutrition. He had scheduled me for a follow-up appointment on July 20th. Mary called the office and pushed back. Mary is now friendly with the staff and even they agreed that a July 20th appointment was absurd. I now have an appointment on June 8th. Given how firm he was about ending my last appointment on time and leaving questions unanswered, and my brain being what it is these days, David is already strategizing the conversation so I control the appointment, not the GI. But I remain pessimistic that the doctor will do anything useful.

That leaves me hanging on until July 11th, when I get to go back to my GI at Stony Brook (more on that in a minute). The alternative is to drop 20 more lbs at which point I will be officially underweight based on BMI and I might be able to get an ED to admit me. For those of you who haven’t seen me recently, it blows my mind that the medical profession puts so much faith in a calculation that, while explicitly defined as not meant to be used as a measure of health, thinks that I have 20 more lbs to lose!

Back to Stony Brook and their Gastrointestinal Women’s Center. When I first suspected that I had Gastroparesis and it was a rare disease that primarily impacted women, I directed my research toward finding a GI that understood women’s health and discovered the program at Stony Brook in Long Island.

I really like my GI there. She is inquisitive, a good listener and is the reason that I got my diagnosis relatively quickly. She is the one that referred me to get the smart pill test. I stopped going to her for reasons over which she has absolutely zero control. The problem is that she is impossible to get ahold of. To reach her you have to call someone who will send a message to a secretary in another building who is then responsible for conveying the message to the doctor. This can take days and invariably the doctor would call back during the 10 seconds that I stepped away from my phone two days after I left the original message. And then I would need to start the process all over again.

This remains an issue. Mary still hasn’t heard back from the messages she left to schedule an appointment for me. And I remain technically a current patient of this doctor. But, using her magic powers as a nurse, she got the medical fax number of the GI and faxed all of my records directly to the doctor. The GI then scheduled an overbooked appointment for me on July 11th. There is a reason that I like this doctor, but Stony Brook is a state university and the bureaucracy is proof of that.

For those counting, I now have 4 GI appointments. Two in July and two in September. And Mary is not stopping there. Johns Hopkins is now out for several reasons, but I am ok with that because they turned me down after misreading my records, so I am unimpressed. Mary is now working on getting me into the Mayo clinic.

Unlike everywhere else, Mayo was on the ball and called me yesterday to do a patient intake with me based on conversations Mary had started with them. Unfortunately, she hadn’t gotten far enough to get me in and they told me that they weren’t taking any new patients. But now I have a patient number there and she is still working backchannels to get me in. They are the best motility center in the US, so they might very well be worth the wait.

In more fun news, this past Monday David and I went to a street fair in our neighborhood. It was a qualified, if seriously exhausting, success and we learned some important lessons. The most important being that as amazing it is that there is so much fun within easy walking distance to our apartment, “easy walking distance” is a relative term.

I may have very little energy, but I have been trapped in this apartment for nearly a year. And although covid wastewaster rates are up in our area, it is summer and there are all sorts of safer outside places to go to and I have no intention of letting that pass me by.

When I do get out, I am limited to the few block radius I can walk. We can drive or Lyft somewhere, but even then, I can only walk a couple of blocks before I need to take a rest while we desperately look for a bench for me to sit on. But no more. Today my brand new transport chair arrives!

With a shout out to my wheelchair using friends, who knew exactly what questions to answer before I even figured out how to ask them and some further research online, I got one with 12″ back wheels (the front wheels are 8″) that are best for navigating curbs and uneven sidewalks in addition to grass. And it is light and folds up nice and small so we can stick it in any Lyft or a cab if David gets too tired to hoof it home after an adventure. We sold our Prius, but kept our CRV, so there is plenty of room for it in our car. It should be delivered today, which will give us plenty of time to take it for test runs before the street fair at Astoria Park next week. Also, I will be giving David the honor of naming the chair because he will be the one doing the hard work.

Lastly, an update on my almost brand-spanking new pump. It is working so well that I forgot this was even an anomaly until Mary asked how it was going. I can comfortably say that that bit of stress has been resolved with having both an active working pump and a working backup should anything go wrong. It is nice to be able to cross at least one thing off the list of stressors.

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.