Fifteen Days: Data and Diagnoses

My doctor beamed at me. “I feel like if we keep you in, we’ll discover something new about your body every week!”

but we’ll get there…

Happy holidays everyone!

Believe it or not, I’m finally home. I didn’t quite take up residence on node 3, floor 6 south of the Pacific Campus of CPMC, though there were times it may have looked that way.

I wore four bracelets for two weeks.

I wore four bracelets for two weeks.

Staying in the hospital for a relatively long time can be uncomfortable and exhausting. There’s no place like home, and the Ozian adage applies when you’re sick too. Even for someone capable of generally sleeping through noise, like I am (particularly notable feats include sleeping through my friends partying in a hotel room with music and a hospital blood draw), the hospital can make it difficult to get a full night’s sleep. While I am technically capable of sleeping through vitals checks and blood draws (especially through my handy PICC line, where I don’t even need to get poked), it becomes a much more difficult pursuit when the nurses and aides have to turn on the light, re-position me to get the correct arm (blood had to be drawn through the PICC arm and blood pressure couldn’t be taken on the PICC arm), take my vitals three times to make sure they’re really that low, etc. It could also be difficult to return to sleep after the early morning check up, including vitals and blood draws, as it would be just close enough (4:30-5:30 usually) to when I would wake up naturally to cause problems. Add in the occasional early morning admission or inconsiderate roommate (4 a. m. is not the time to watch TV on full blast or call everyone in your address book to complain about your bowels!) and sleep could feel elusive. On top of that, I was often in need of more sleep than usual because I was exhausted from various procedures and just from being sick. I did take naps, but there’s nothing like my own bed for a good night’s rest.

And then there’s claustrophobia. I spent almost all of the fifteen days on the sixth floor, with a few sojourns to GI Lab (fifth floor) and radiology/nuclear medicine (second floor.) I didn’t step foot outside the entire time. Believe me when I say that the walk from the hospital entrance to the curb where my dad had the car felt fantastic. Fresh air truly is a wonderful thing. Being cooped up like that could make you go a little bit crazy.

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It was also hard being 3.5 hours from home. My parents had to stay in a hotel and we hadn’t realized how long the stay would end up being. You don’t quite have your regular support network when you’re that far from home. (Though I fully acknowledge that I am incredibly lucky to have such a good motility center only a few hours from home! I’ve gotten to know a number of people who have to travel across states or even oceans in order to get the appropriate medical care for their condition!)

There are always the views...and there were far better ones when I went on my blood clot preventing walks around the floor!

There are always the views…and there were far better ones when I went on my blood clot preventing walks around the floor!

All of the inconveniences of the hospital stay pale in comparison to what I got out of it, though.

When I left off in my last post, I think I’d just had my gastric emptying study. I didn’t know my exact emptying time, but I knew that it had looked and felt pretty delayed. On Monday I received news of the precise time: 54% of my simple meal remained in my stomach after four hours. Normal is considered to be under 10%. This kind of delay is indicative of pretty considerable gastroparesis.

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Radioactive eggs actually become yummy when you haven’t had anything to eat by mouth in weeks. Yes, I enjoyed eating the meal for the emptying study…at least until the pain and reflux started!

Saturday morning, I wrote an update here, but I don’t think I said much about my cardiac issues other than to mention that my heart rate was having problems. Well, first of all, the good news: my QT interval reverts to normal when I have a good electrolyte balance and avoid even the most mildly prolonging of  medications. If I take even “less prolonging” medications, my QTc (corrected interval that accounts for heart rate) gets out of whack. Basically, this means I have to be very careful about what medications I take and there are pretty much no anti-emetics (drugs for nausea) or pro-kinetics (drugs that improve motility) that I can take. That’s less of a sacrifice than it might be because none of the anti-emetics really work on me, unless I get enough of a combination that they just put me to sleep. I talked about this with a couple of my doctors and it’s because my vomiting really isn’t nausea-mediated. For a lot of people, the loop goes nausea -> vomiting -> nausea but for me it’s vomiting -> nausea -> vomiting.  If I take drugs that remove nausea from the equation, I may temporarily feel more comfortable, even falsely optimistic, but that soon goes away when I begin vomiting again. I also don’t always have nausea even when I am vomiting. Weird, I know, but it helps explain the lack of efficacy!

More of an ongoing dilemma has been my heart rate. I was put on telemetry (heart monitoring) and a beta blocker because of my long QT at the beginning of the first week. While on the monitor, everyone began to notice that my heart rate would spike considerably at different points through the day. Several times when I got up to go to the bathroom, for example, nurses would race in to ask what was wrong and then tell me my heart rate had gone up. “Oh,” I would say, “I guess it feels a little fast.” I figured it was going up by ten, maybe twenty at most, since I didn’t even feel lightheaded, didn’t see black, didn’t collapse — all things I’ve done in the past with orthostatic intolerance.

My heart rate was reaching into the 160s and 170s when I stood up. Even with the beta blocker.

Some of the telemetry that helped us figure that out.

Some of the telemetry that helped us figure that out.

At about 3 a. m. Saturday morning, a nurse woke me up, with some difficulty. She (or he? my exact memories of that time are a bit blurry) explained that she had to take my blood pressure again. It was 75/33. She said that that was the third time it was in that range and she called the night hospitalist. He came in and talked to me for a minute before looking at my file and putting in a few orders: a pill to bring up my blood pressure, extra fluids, blood cultures to check for a line infection, an IV broad spectrum antibiotic, and discontinuation of the beta blockers until the cardiologist could review my case. (As an aside, the tiny pill I swallowed to bring up my blood pressure is the last thing I kept down.)  Don’t worry — I wasn’t septic and I didn’t have an infection. But I wasn’t able to ever really get my blood pressure up high enough to take the beta blocker again. (It’s very normal for me, when relaxed, to run around 100/60, and when I didn’t get massive amounts of saline I was often in the 90s, so I didn’t have all that much room to spare!)

I’ve talked to no fewer than four cardiologists since that point, and everyone agrees that as long as I’m mostly asymptomatic with my tachycardia, no more beta blockers and lots of fluids. My heart rate continued to spike into the 160s or so when I stood and continue around the 140s when I stayed standing up. My resting heart rate was typically in the 80s or so during the day, often dipping into the 50s at night, so I had a lot of variation. Some of this may just be deconditioning, so everyone has encouraged me to keep standing/walking in the hope that will help with this in the future. (When I first went on telemetry, concerned nurses originally made me stay in bed. This meant I got heparin shots to prevent blood clots. I’d rather walk, for a lot of different reasons.) The electrophysiologist I saw in the hospital told me that it’s common to have issues with regulation of heart rate and blood pressure if you also have gastroparesis/motility issues because they all involve the autonomic nervous system. The only weird thing is that I’m asymptomatic, but I’ll take that kind of weirdness! So, for now, I just have postural tachycardia, rather than Postural Orthostatic Tachycardia Syndrome.

My cardiology fellow brought me this guy. She was amazing, both as a doctor and a person, and felt badly about my being inpatient over the holidays. Isn't he the cutest?!

My cardiology fellow brought me this guy. She was amazing, both as a doctor and a person, and felt badly about my being inpatient over the holidays. Isn’t he the cutest?!

Back to the star of this show: my stomach! On Monday, I had yet another EGD (upper endoscopy), this time with a pyloric manometry. The pylorus is the valve that separates the stomach from the small bowel and allows the passage of food. Some people with gastroparesis have a pyloric spasm that contributes to their delay in emptying food from their stomachs. For those people, injecting Botox into the pylorus can help. When I went in for the procedure, my doctor said that she would inject Botox if my pylorus had that kind of problem. It turned out that it didn’t, so that ruled that option out.

Also on Monday, I received a diagnosis of idiopathic gastroparesis. While some gastroparesis stems from diabetic neuropathy, and a tiny percentage comes from autoimmune disorders like scleroderma, much of it is idiopathic. That sounds crazy until you realize that, as my favorite hospitalist Dr. Cheng explained to me, much of medicine is idiopathic. We don’t know what causes most cancer or heart disease, for example, even if scientists have identified some risk factors.

Through all of last week (and all of my stay, really), plans and ideas continually changed. Some of you undoubtedly saw my Facebook updates to that effect. Originally, there was some talk of my receiving a J-tube (surgical feeding tube into the small bowel) and a Gastric Electrical Stimulator (pacemaker for the stomach) in the same surgery within a few days. Then, there was talk of a temporary stimulator to do a trial since we didn’t know that the stimulator would work in my case, since my motility is so weird. Then, in part because the holidays were coming up, my doctors decided to wait to do the temporary stimulator until after the first and to have a surgical J-tube placed last week. While in my small bowel, the idea was to take a full muscle biopsy (which is only possible during surgery) to check for some weird muscular diseases since I’ve had other neuromuscular symptoms. I talked to the surgical resident who would be on the surgery with one of the minimally invasive surgeons Tuesday night and she said that the surgery would probably be Thursday or Friday since I wasn’t on the schedule for Wednesday. Then she came back later that evening and said that I was going to have surgery on Wednesday and it would be some time after 2:30. Then she came in early Wednesday morning and said that actually it would be sometime that morning. See what I mean by a roller coaster? And that pales in comparison to what’s coming.

Wednesday morning, not long before I was set to head down for surgery, Dr. Cheng came in to tell me that he, Dr. Shetler, and Dr. Snape had been talking and they decided not to have a surgical j-tube placed just yet. The muscle biopsy was too risky for a shot in the dark and any time you operate on the intestines, you run the risk of creating or exacerbating a motility problem. Since they planned for me to come back in just a couple weeks for a stimulator trial, and nobody could say if I would need a feeding tube long term. And everyone thinks that it’s basically a miracle that I haven’t had abdominal surgery at this point and nobody really wants to be the first one to mess that up.

So this happened:

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You may not quite see, but I’m smiling and giving a thumbs up in the second picture. (Thumbs up rock! They basically kept me going through the stay!) I had yet another nasal tube placed at bedside, before being sent down to interventional radiology to have it advanced into my jejunum. Dr. Shetler (my main GI) came by to talk to us about the new plan right as transport arrived to take me down to IR. She said she’d come back but she talked to my parents for a few minutes as I was being wheeled away. The last thing I heard her say as I was being wheeled away was that we were running out of options and if the stimulator didn’t work, we’d be out.

Not. An. Option.

I got down to IR and the nurse assisting the radiologist was the same one I’d had for both my last NJ placement at CPMC and for my Upper GI. She remembered my problems with latex! 😀 I figured out that I was particularly memorable because I was basically the youngest one in the hospital (it only takes patients over 18 and 19 year olds are a notoriously healthy bunch…and still handled through children’s hospitals in a lot of cases.) Also, the tubes help.

The radiologist came in and got to work. He had no trouble advancing it through the pyloric sphincter, but he started to run into problems in my duodenum, which is the first section of the small bowel. He started asking me some questions about my medical history, which I was able to answer. (The nurse was impressed by how much I remembered — a good memory can really come in handy in these kind of situations!) He told me that the first part of my duodenum was baggy and loose like my stomach and then it suddenly became normal right after the part he was having difficulty getting the tube through. He started injecting contrast, which he did several times, and he asked if I’d had an abdominal CT. When I said that I’d had one the previous week, he sent the nurse to pull it up on the computer. He got the tube into my jejunum, then went to look at it. When he came back, he asked me if I’d ever heard of SMA Syndrome.

“Superior Mesenteric Artery,” I said, “I don’t know a lot about it.” I didn’t. I’d come across a few references previously, and they didn’t make it sound good. There’s no good reason for me to have even remembered what it stood for, but I did.

He showed me the x-rays and explained that when he sees a young, thin girl with failure to thrive and gastroparesis-like symptoms and a baggy duodenum that suddenly gets normal, he has a pretty high suspicion of SMA syndrome. He said they see about two cases a year at CPMC, always with my kind of symptoms and body type. He said that my CT does indeed show the characteristically narrowed angle.

What happens with SMA Syndrome is that the eponymous artery, which crosses over the duodenum, ends up compressing the duodenum to the point of partial or even full obstruction. Normally, there should be a pad of visceral fat protecting the duodenum, but sometimes that pad disappears. It’s controversial whether it can be a primary issue or whether it has to be secondary. While at first my doctors kicked around the idea of it being primary, nobody seems to be very convinced by that and the general thought is that some kind of motility issue caused weight loss, which caused SMA, which caused further motility issues and weight loss, which made the SMA worse….They keep emphasizing that my case is complicated for a reason!

The radiologist brought in my parents and showed up the abdominal CT and explained some more about SMA Syndrome. He explained that while everyone’s concern with body habit is about people being overweight, being underweight can be even more dangerous. Losing fifteen or twenty pounds from an already thin frame just isn’t good. He showed me some maneuvers to try if I were able to eat to see if they would help allow for the passage of food through the obstruction. My mom asked him if this meant that I would be able to eat normally once the SMA is fixed and he hesitated, before saying that it would probably take some retraining.

When I got back up to my room, my GI came back by. She hadn’t heard from the radiologist yet, but when I mentioned SMA, it was like a light bulb went off. She said that it could explain my symptoms. It even explains how I haven’t thrown up my NJ tube, despite some serious vomiting — the SMA pinned it in place. When she came back after checking the scans, and the hospitalist also reviewed them, we all came up with a plan of attack: try to put on weight with the tube feeding and see if that resolves the SMA. If it does, we’ll see how many of my symptoms remain and treat accordingly (considering the stimulator if we absolutely have to.) If it doesn’t, then the we’ll have to consider some scarier options (really major surgery, basically.) Hopefully, it won’t even begin to come to that. For a lot of people, restoring the visceral fat does the trick, and I very much hope that I’ll be one of them!

(At this point, I should probably say that if you’ve Googled SMA and seen the crazy high mortality rate, that’s only because it goes undiagnosed so much. When it’s diagnosed and treated accurately, there’s not much of a mortality rate.)

This hasn’t been an easy diagnosis to receive, but we have a plan going forward and something to explain my symptoms and their severity. Over the last few days of my hospital stay, we figured out a formula that I could tolerate through my tube (fourth time’s the charm!) and I’ve been sent home with that and saline/potassium/dextrose infusions through my PICC line. I have a lot of really smart doctors who are thinking things through and each day we get closer to a resolution. I’m stable now and while my situation isn’t entirely tenable in the long term, we have time. My doctors have collected a lot of data and stabilizing me has given them time to go through it and think about it some more.

I've got a PICC, so it's all good.

I’ve got a PICC, so it’s all good.

Saturday was a nice and distracting day. I started a better formula, took a shower, had a great visit from my friend Genny who was back in the Bay for the holidays, and got to go through a pole-free walk because my pumps were broken.

091Versus carrying around these kinds of things…

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And while I came into the hospital in a wheelchair, I left walking.

READY FOR ANYTHING!

READY FOR ANYTHING! And again, with the thumbs up!

I mean it when I say ready for anything. I won’t let a little SMA or gastroparesis get me down!

And a new feature, started at the suggestion of my uncle: foods I’m currently craving! Chocolate (expect to see that always), chocolate fudge, French toast, Atlantic salmon, garlic bread, roasted carrots, ice water.

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Jordan Eats Enteral Formula

It’s all about the Peptamens, baby!

Get jealous, people! I have a great supply of Peptamen 1.5! I’m actually not being facetious at all. I started bouncing around when I got a call this morning saying that insurance had stopped dragging its feet through bureaucracy and had approved my new formula. (It helped that I was on my morning “break,” where I flush my tube, wash out the night’s bag, and shower.) Peptamen is the formula that my doctors think I’ll tolerate better than my old Jevity, because Peptamen is “semi-elemental.” That means that the ingredients in it are already broken down. It’s therefore less likely to cause pain, nausea, vomiting, gas, diarrhea, cramping, etc. Sounds like a good improvement, right?

Hooked up.

The other handy thing about the formula change is that I’ll be getting 1.5 kcal per milliliter rather than 1.2 kcal/ml. That makes for a nice difference when it’s spread over 50 ml/hour for 24 hours! Hopefully this will help me gain weight more easily, as well as more comfortably. (Being able to sleep without waking up in pain should be quite the luxury.)

I’m thrilled and incredibly grateful for this change.

The last couple of days weren’t great, stomach-wise. I didn’t keep much down by mouth (after doing a bit better over the weekend) and had a fair amount of pain. It didn’t help that we went back down to SF for a cardiologist appointment on Monday (more on that later! I’m trying to space out the big, crazy, “this should be an episode of House” medical stuff with more daily life kinds of things) and those trips are always exhausting. Also the whole waking up in the middle of the night thing. Also the fact that my dear Joey pump, which has been doing a great job of not beeping at me in the middle of the night, has started doing so about an hour before I was intending to wake up.

In bookish news, I’ve been rereading His Dark Materials, and I finished The Subtle Knife this morning. It’s particularly fun to return these books now that I’m intimately familiar with so many of the sights in Oxford that they reference. On Friday, when I was in the ER (yeah, that stories coming as well — it ended with a new tube), I read Dodie Smith’s I Capture the Castle. It was fantastic and I highly recommend it! Part of me wishes I read it while high school-aged, just because I think it would have been one of those wonderful books that becomes a best friend, but a selfish part of me (if one can be selfish to one’s own past self) is thrilled to have it now. (See: reading the entire thing in the ER while waiting for the intervention radiologist to have time…on a slow day…when there wasn’t a crazy weight.) It’s one of those books that makes me question the assertions that chick lit and YA lit are new and depraved (I’m exaggerating, but not much) forms of dumbed-down literature. I think that I Capture the Castle has much in common with the best of both those genres, and it’s an intelligent, pretty wholesome in a non-preachy way sort of book. The narrator, Cassandra, is a 17 year old girl who lives in “not-so genteel poverty” in a decrepit castle in the English countryside, where she seeks to practice her craft as a writer by recording the events that transpire within and around her charmingly idiosyncratic family. Much changes for her, her older sister, and her artist’s model young stepmother when a pair of wealthy young American brothers move into the neighborhood. It’s a bookish sort of book and a writerly sort of book; there are literary references and jokes about writing and writers that anyone with aspirations to being one — or who has spent considerable time around one — can relate to. I’d particularly recommend it to bookish, writerish sort of teenaged (or even preteen, maybe) girls, who I think will find Cassandra a great “friend.”

 

 

Because Any Time a Headline Starts with “Peer’s Daughter….”

I’ve been looking for this volume for a while. Today, my dad surprised me with a copy. Let the Mitford madness begin continue!

For those not familiar, the quick run down is this: An English Peer and his wife had seven children, and six daughters. They all grew up in a variety of English country houses, where they learned how to raise chickens and come up with ridiculous nicknames. Except for the Boy, who, being a boy, went to Eton. Nancy the Novelist became a Bright Young Thing and played with Noel Coward and Evelyn Waugh before saying au revoir to her gay ex-boyfriend and her unfaithful husband to go write about Voltaire’s love life in Paris. She was a socialist, but that didn’t stop her from writing about how vulgar it was to ask for a serviette. You might have heard of some of her novels, like The Pursuit of Love and Love in a Cold Climate; they were mostly about her family and the ridiculous nicknames. Diana married a Guinness (yes, like the beer) and was frightfully wealthy and famous, but decided she’d rather take up with the Sir Oswald Mosley, who was already married to the Viceroy of India’s daughter, because fascism was more fun. Diana spent most of the Second World War in prison, because being relatives of Churchill’s didn’t excuse your being more dangerous, cleverer, and prettier than your British Union of Fascists husband, it just got you a cell to share with Roderick Spode. Unity towered over the rest of her year’s debs (literally) when they were presented at Court, but took her finishing year in Berlin instead of Paris so that she could become bffs with Hitler, which she did with remarkable skill, but then he liked his other girlfriend Eva and went to war with Britain and Unity shot herself in the head with his gun. She survived, he paid her hospital bills and sent her home, and she became too mentally incapacitated to be tried and a Christian Scientist. Jessica had shared a bedroom with Unity, but made sure to carve hammers and sickles with a diamond ring next to the swastikas Unity put up until she saved up enough in her running away fund to elope with her cousin (and Churchill’s nephew) Romilly, with whom she went to Spain, where it did not so much rain as rain bullets. They joined the International Brigades, fought (for the Republic) in the Spanish Civil War, went to Canada and the US, and when Romilly died, Jessica married a civil rights lawyer, joined the Communist Party, and taught us all how much funeral providers were ripping us off. Little Deborah took the traditional route (someone had to) and contented herself to stay out of the spotlight by marrying the Duke of Devonshire’s younger son, who became the heir when his older brother made the commonly fatal mistake of getting into an airplane with Kick Kennedy. Thomas, the boy, liked fascism a little to well to fight in Europe and so went to fight in Burma, where he died. And Pamela mostly liked chickens a lot.

And then they all became Harry Potter characters.

(No, seriously. Sirius is Jessica in drag and Diana and Unity bear more than a passing resemblance to Narcissa and Bellatrix. And Rowling has flat out said that she named her daughter after Jessica, as JKR’s favorite book is the one I hold above, so if you’ve ever wondered which way she leans….)

Back from the city

I seem to be on a slow posting/updating schedule here. Sorry about that. I’ve actually been back from my appointment at CPMC  since Tuesday evening, but I didn’t get around to working on this post until last night. (No particular reason why – the last few days have been pretty good, just a bit of tiredness.)

We drove down to SF Monday afternoon and checked into our hotel in Cow Hollow. We had dinner on Steiner Street – it’s a really cute area, btw. Of course, as my grandmother put it, we weren’t in San Francisco for the reasons you want to be in San Francisco….

Tuesday morning rolled around and it was time for my appointment at the Center for Neurogastroenterology and Motility. We planned to grab a cab and skip dealing with parking, hills, and traffic, but that didn’t work out, so we ended up driving to get to the appointment on time. It worked out fine – Cal Pacific’s Pacific Campus parking garage was convenient for the Center and it turned out to be an easy ten minute drive. We made it to the waiting area, a few minutes later than we had planned, but still in good time. Though, I do think rushing up the hill from the garage helped to elevate my heart rate a little bit, as my blood pressure was a tiny bit higher – and probably therefore better – than it has been of late. It’s also possible that a tiny bit of my old “white coat syndrome” reared its ugly (irritating) head again. (It turns out, you stop getting nervous about doctors’ appointments when you have them all the time and getting your blood pressure taken no longer feels quite as intimidating when it ends up happening every few days, or hours. True story.)

Upside of driving: the view from the garage.

The Center I went to is really well regarded in the medical community. As I’ve mentioned before, my local gastroenterologist, who practiced in the Bay Area until recently, recommended it as the best place to deal with these kinds of issues. Dr. Snape, one of the physicians at the Center (I think he may have been the founder? He trained the other two doctors, including the one I saw), apparently wrote the motility questions for the gastroenterology boards. The clinic is also one of the places that has pioneered the use of the Gastric Electric Stimulator, which is used to treat severe gastroparesis. I believe I also previously wrote that the hospitalist at Enloe told me that the hospital has sent people with Cyclic Vomiting Syndrome (CVS) to this clinic before and they’ve been successfully diagnosed and treated. Naturally, with all this information, I had high hopes going in.

The good news is that I had a really good appointment, very much like Dr. Shetler (the gastroenterologist I saw), and still have high hopes for future treatment. The slightly-less-good news is that it’s still going to be a while before I actually get any of that treatment.

Before I went down, I had to fill out something like 50 pages of paperwork. I’m not exaggerating when I say that it took an hour and a half, with my parents’ help and frequent cross referencing of my calendar log, my journal, and bills. Aside from the typical questions about insurance and the by now very familiar things to sign, there were far-ranging questions about everything from family history to waist size to total body symptoms to detailed questions about my GI tendencies. Sometimes things were difficult to know whether to answer. Should I say yes or no to a question asking whether I’ve had difficulty swallowing, when my only difficulty swallowing has surrounded my tube? Should I circle “ever previously refused for a blood donation” in the long list of possible symptoms, when I was only turned down for not weighing enough, and three years ago at that? How distant of relatives count for family history? (And let’s not even go into the judgment calls required in filling out the Rome III part where the questions asked about frequency….) One thing that was helpful for me in filling out the forms was that it prepared me to be able to answer Dr. Shetler’s questions during my appointment.

And she certainly had lots of them. J I really liked her – she had a very reassuring bedside manner and seemed genuinely interested in and concerned about my case and me. She asked very precise questions, which is always helpful. We talked a lot about exactly how often I throw up, how I feel in between, what I’m vomiting, what does or doesn’t seem to precipitate things, and my other symptoms. We talked quite a bit about my “normal” stomach pain and that’s changed recently. I truly appreciated that she was interested in this, as well as in my obviously more pressing nausea/vomiting/weight loss situation. It does seem like it’s mostly a dietary issue (lactose and so on). We spent a considerable amount of time on my history – both of the time when I was acutely sick when I was eleven and twelve and my sort of mini “episodes” in between. (I told her about how I always seem to end up with an upset stomach and vomiting when I get colds, for example, and my getting sick two days after my double whammy of an allergic reaction to mushrooms and an allergic/adverse reaction to Benadryl in February.) We also discussed the medications I’ve been on and my reactions to them and she assured me that anything she tries me on will start with a very small dose. She confirmed that there’s no reason for me to take Reglan or Domperidone at this point, particularly given my side effects.

I didn’t walk out of the appointment with an official diagnosis. Dr. Shetler did say that it sounded like I had a lot of features of CVS, but that particularly as it’s a clinical diagnosis, she needs to rule out some other things first. I have to have another gastric emptying study done at CPMC and a breath test for small bowel bacteria overgrowth (SIBO). She didn’t think it was really gastroparesis, given the way I have good days, the way that I will sometimes wake up vomiting bile, and the way that my emergency room visits have gone, but she does want to be sure before treating me for anything else. She also wants to do another test (I think from looking at the center’s website that it’s called an antroduodenal manometry) that will look at the way my stomach relaxes and contracts. That test also involves another endoscopy. I told her about my past endoscopy experience and she very quickly turned to look at how much Versed I’d been given and said that it was a good amount and that it was a good thing I had Versed listed as one of my allergies. When I told her that I’d had a similar reaction to Benadryl recently, she said we’d have to have an anesthesiologist to do the endoscopy. I won’t be under general anesthesia, but I’ll have some other form of sedation that requires an anesthesiologist’s administration and monitoring. I guess this means I won’t become  “The Versed Girl” at another hospital!

It might have been about that time that I told her that, in addition to the reactions to Versed and Benadryl, I’ve had two other episodes of the paralysis part of my reaction, at least. I told her that I’d been told that they might be a form of atypical migraine or a reaction to one of my medications, but we hadn’t really figured that out. She said that that was alarming. I’m not sure how to write this next bit without coming across as complaining, which really isn’t how I intend it, but it’s really hard when doctors say things like that. I don’t fault them at all for doing so, but it’s just a difficult thing to hear. Of course I felt that way, going through it, but hearing it from a medical professional makes it all the more troublesome. This issue needs to be looked at along with my other symptoms, but I’m not entirely sure who’s going to be looking into it. (I’m basically collecting doctors here at this point.)

So, remember the downside? Dr. Shetler has ideas for CVS treatment, but they depend on ruling other things out. (She also advised me to follow a gastroparesis-type diet – low fiber, low fat – until we can rule that out. Seriously, I can eat about twelve things at this point.) Ruling those things out looks like it’s going to take until November 9th. Yes, over a month more. It was difficult to schedule the test involving the endoscopy, as the anesthesiologists were all booked out. My hope is that someone will cancel and I’ll get in sooner. (The other tests are easy to schedule.) I reassure myself with the knowledge that all of these tests and treatments will eventually leave me not only as well as I was before May 18th but actually better.

There was another big thing we talked about at my appointment, and that Dr. Shetler was concerned about, but I’m not quite ready to discuss it here. I have appointments with my gastroenterologist and primary care physician next week and I need to talk to them first. But, if all goes well, I may have something exciting – something I’ve been waiting for – to announce at that point. J

Another dressing change today. It’s bulkier, but more secure, so I actually feel it less. Then again, I always feel the dressing changes less than the old pieces of tape, since by the time my the tape’s changed, the old piece is pretty greasy and frayed. I appreciate what the tube has done for me, but I’ll be very happy when it’s out. (Full body pic shows my nose before. If you, you know, squint.)

Twentynothing

Thanks for all the lovely birthday wishes!

My first day as a twentysomething — actually a twentynothing — went well.

The beginning proved less than smooth, as I woke up with stomach pain and was sick for a few hours, but despite my early fears, I did not have to spend my birthday feeling poorly. (Or in the hospital, which was my big fear when my mom momentarily thought my tube had clogged again. Thankfully, it proved a false alarm.) I recuperated in time to take a lovely phone call from my Aunt Edie, whom I talked to for quite a while. I was able to drink ginger tea for lunch, which left me optimistic that I could still manage birthday cake later. The only lingering effect I had of the episode, or whatever it was, was that throughout the day my stomach was severely distended. It’s probably visible in some of the photos, sorry.         (On the plus side, it did help keep my skirt up….)

In the early afternoon, I heard the door ring and my dad called out that I had visitors. It was Kerstin and the girls! My dad had actually forgotten to tell me that they were coming, but it worked out better that way because it was a most fabulous surprise. I got to spend a few hours talking and laughing (not to mention playing) with three of my favorite people. And yes, I spent a good chunk of my first afternoon as a twenty year old playing hide and go seek. I couldn’t imagine a better way. Really, I think adults forget all too easily how much fun playing is.

I rested for a little bit after the visit, before joining my parents for a wonderful birthday dinner. I had snacked on some rice cakes (decorated with dried fruit and gummy bears, birthday cake style) Kerstin brought over and my stomach was doing well. I decided to go for it and tackle the planned birthday dinner. We had brown rice spaghetti with grilled chicken sausage, zuchinni, onions, and a little light lemon juice (which blended in perfectly)  and roasted butternut squash on the side. It was absolutely delicious. The pasta was incredible — I’m not sure exactly what all was in there in terms of spices (I know I’m leaving out some things), but it was wonderful. We all decided that we liked the brown rice pasta better than wheat pasta, too. It has a better texture than most wheat pastas (more like freshly made pasta, in my experience) and a better flavor. I think it could be a nice alternative to whole wheat pasta if someone doesn’t like that but still wants whole grains, or just a wonderful, easy option for pasta lovers in general. The butternut squash was delectable as well — fall is coming. (That sounds so much less foreboding than “Winter is coming,” doesn’t it?)

After dinner, and a break to allow my stomach to settle and Mom to “frost” the cake, we settled into the dining room for dessert and presents. The cake, which I referred to on Monday, turned out beautifully. I’m referring both to flavor and appearance, of course. Our substitutions for the cake part itself weren’t major, as I’m now eating gluten. (That would have been a more complicated endeavor!) Still, we swapped out almond milk for cow’s milk and Earth Balance for shortening with no ill effects. If there were any remaining almond flavor, it was insidious enough to please my father. The Earth Balance did make the “yellow cake” (made from an old, simple recipe book of my grandmother’s) more white than yellow. I also think it made it a bit fluffier, and therefore less dense, than shortening would have, but I found the texture very nice.

Frosting initially presented a more considerable challenge. Normally, I would go for a chocolate frosting. (Naturally.) However, I’m avoiding chocolate both because it hurts my stomach and because it’s one of the most likely triggers for my neurological problems. I hope to add it back into my diet someday, but I recognize that chocolate is perfectly acceptable sacrifice to make in the name of health. (Why can’t Harry Potter’s laws of the universe work in reality? Chocolate totally should have magical healing properties.) I’ve never been a huge frosting fan, and making a vanilla-type frosting with Earth Balance held no appeal. So, instead, I turned to a recipe my friend Janosz had introduced me to on Smitten Kitchen. We had made this raspberry filling for Kelsi’s birthday crepe cake. (Layers of buckwheat crepes, honey-sweetened raspberry filling, and homemade chocolate ganache. And no, it wasn’t just the ganache that was homemade — it was actually the chocolate. It was a  gluten-free, egg-free, soy-free, dairy-free, cane-sugar-free mound of divine goodness. I wish I had pictures to show but I realized that while I took about 5256000 of them during every stage of the process, they’re on Kelsi’s camera. Trust me, all of our friends were skeptical that the allergic Kelsi was able to eat it, it was that good.) My saint of a mother even strained out the raspberry seeds. It made a beautiful “frosting” that complemented the cake beautifully. This is a recipe I plan to keep around regardless of what my dietary restrictions become, as it absolutely trounces most frostings, in my opinion.

So, with a scoop of raspberry sorbet, we had a cake that I was able to eat and enjoy. Eating, and eating things I enjoy, on my birthday has been a major goal for me. I really wanted to be able to indulge in a piece of birthday cake. It’s funny, because if I had been at school I might not have even eaten cake literally on my birthday, but it took on a whole new importance here at home. I’m very happy to report that I succeeded.

Now, for the pictures!

Outfit for the day. Also, you can see my present. 🙂

Berry straining


 

19 Reasons Why I’m Happy

  1. Tomorrow is my birthday. I’m almost ridiculously excited about it, though I can’t put a finger on exactly why. I’ll admit that ever since I realized I wasn’t going back to Bryn Mawr this fall, I’ve been concerned that tomorrow would be difficult. It was supposed to be the first day of my senior year as well as the birthday where I reunited with all of my friends after over a year of being away for summer and study abroad. Now neither applies for me. But instead of feeling bittersweet about tomorrow, or even dreading it, I’m out right excited.
  2. This was my Saturday.

This may – and probably should – seem like a bizarre, counterintuitive, even disturbed reason for happiness. A day spent in the emergency room spent figuring out what to do with a stubbornly clogged feeding tube is never fun. However, it was a remarkably less painful experience than it could have been. We went up to the Feather River Hospital in Paradise again, as that’s where my gastroenterologist admits and we deal with most tube issues. The recently re-done emergency room provides an excellent set up, with a comfortable waiting area (genuinely!) and well-equipped private rooms in the ER. (I’ll appreciate whatever I can get, of course, but I am very much grateful for not having to reside in the hallway watching gruesome gurneys roll past while I’m nauseated.) I received excellent medical attention and the ER doctor quickly communicated with my GI to develop a plan of action. Moreover, every time I leave that hospital, I remark about how incredibly nice and happy everyone who works at Feather River is.

The best part: despite some fears to the contrary, I didn’t have to have my tube replaced! The radiologist managed to unclog it under x-ray. (Fun fact: They can now sometimes do bedside x-rays. While the openness of my tube had to be determined in an x-ray room, a tech was able to check for placement in my ER room with a rolling machine. I was impressed. Granted, she said she was only able to do it because of my size, or lack thereof.)

  1. Food, glorious food!

Very cautiously, I’m beginning to eat again. After a week of non-success followed by non-consumption, I started nibbling yesterday. (I actually started nibbling Saturday night, unsuccessfully, but I don’t want to talk about that.) It’s working, for the most part.

2. Reason 3 means that I should be able to spend some extra time untethered today.

3.My neighbor and friend Kerstin visited yesterday with her two adorable little girls.

Amaya wants the world to know that we’re twins because we shared a chair for this photo. And the 75 other attempts at a photo.

4. It looks like I’m going to be able to eat on my birthday. I set that as my goal when I first stopped taking in food by mouth, though I’ll admit that it was often expressed more as a desperate plea than a plan. It looks like it will actually work out.

5. My mom and I think we’ve figured out a way to make a cake I’ll enjoy without aggravating any of my myriad of allergies, intolerances, or sensitivities. I’ll update you on how that works out.

6.Amaya made me this fish decoration, which now brightens up my pump. Isn’t it pretty?

7. Ella joined in on the fun with a card. (And she’s writing! In German!)

8. My cat Duchess (and yes, she thinks/knows she is exactly that) has mostly gotten over her initial fears of the pump and the tube sticking out of my face and now likes to keep me company. As she’s doing right now.

9. I’ve taken to heart Ani’s suggestion about revisiting favorites among the childhood classics for reading material and I’m loving every minute of it.

A well-loved copy.

10. My new medicine is helping, thankfully.

11. Today feels like it’s going to be a good day. Fingers crossed it works out!

12. I’m talking to Dorothy! Love this girl.

13. I’ve said it before and I’ll say it again: my parents are simply amazing.

14. I’m managing to write fiction again. Just a tiny bit, and without really going anywhere, but feeling up for it at all is incredibly important to me. I have a friend who talks about how there are things we hold as fundamentally true about ourselves and how difficult it can be when one of those things is shaken. This is one of those things for me, and having it come back fills my heart with delight.

15. I’m happy I have this blog. I’m happy I have this outlet to express what I’m going through and this way to record it. I’m happy I’ve received so much support.

16. I’m grateful for my ability to navigate the medical system. I’m incredibly fortunate to have a family with the resources (which include intellectual, emotional, and temporal) to see that I receive the best possible care. As hard as everything is at times, it could be so much harder. I truly think of this every day — what if we couldn’t afford to pay for medications not covered by insurance? Or even frequent co-pays? Or insurance itself? What if I didn’t have family members with schedules flexible enough to enable them to spend days in the hospital with me? What if I didn’t have the ability to research my condition myself and seek comfort in my findings?

17. I feel like I sometimes complain a lot on this blog, which really doesn’t capture how I feel 95% of the time. This is a place to vent, a therapeutic outlet, and somewhere I’m confronting what’s going on in my life. But the thing is, I’m happy. Some of it stems from the fact that I am generally more of a happy person than not. But some of it’s because I feel comfortable in the knowledge that things are going to be okay.

18. One of the oddest things I’ve garnered from this week is a deep sense of security. The events of this week (and, yes, getting Reglan out of my system) have taught me that much. I’ve always known I have people who love and care about me, but I’m seeing now exactly what that means. I don’t have a cure or a magic bullet to heal my stomach, but I have medications that make me feel better and ways to feed me and, most of all, I have people who will make sure I get those when I need them. My parents, my doctors, my friends….I feel grateful beyond words.

19. This is my last day as a teenager. This is difficult to write about without resorting to cliché, and in particular cliché that can give the wrong impression of me. I was never a mall goth or a rampant Holden Caulfield quoter (though Salinger has been a favorite!) Aside from some more irrational moments of teen angst, I generally survived my teenaged years with the solid understanding that this, too, would pass. I didn’t feel so much that nobody understood me as that I just really wasn’t cut out for being a teenager. I didn’t have it bad; there’s no underlying trauma, no deep secret misfortune, or even receipt of high school bullying. (It’s pretty easy to avoid high school bullying when you, you know, don’t set foot in a real high school at any point during the four years….) For the last three years, my technical teenagerhood has been rather technical, anyway, as once you get to college things are different. (People dismiss the comparisons to Hogwarts as frivolous, but there really can be an arriving at Hogwarts feel to starting college.) I’ve grown into my own style. For the last year or two, many of my friends have been out of their teens, anyway, and we’ve begun to progress into the dinner party stage of life, in our own casual way. But there’s still something of a relief at having survived this decade intact and a sense of having arrived as I greet my twenties.

Saturday Farmer’s Market + Downtown Chico

One of my favorite things about returning to Chico, my charming hometown in Northern California, is the Farmer’s Markets.

There’s community.

There’s food.

Beautiful food.

Glorious food.

This is what tomatoes are supposed to look like.

At the farmer’s market, I can get Chris’s eggs.

They are seriously the best eggs I’ve ever had.

And Chris is a great guy, too. He’s always ready to greet you with a big smile and a fantastic Yorkshire accent.

I also got my almond butter there.

A while later, I headed back downtown with my parents to run some errands. (Good days, how I love you.) After visiting Campus Bicycle, where my dad’s bike was being worked on, we came across the a local festival that was going on.  We ran into several people we know, including Ann Schwab at the “Meet the Mayor” booth. 

We came across this great ice cream cart, normally found at the Thursday night farmer’s market. Spoons Chico makes vegan (and hence lactose-free!) ice cream. Unfortunately for me, it’s made with coconut milk and while I’m not allergic to it, every time I’ve tried coconut milk or other coconut products, my stomach has been in pretty severe pain and I usually have an episode. (I first noticed this when a friend of mine was doing a food challenge with coconut and the dishes seemed to make my stomach hurt more than usual. Since coming home, this experience was further confirmed by some attempts to use coconut as a dairy-alternative.) My mom tried some, however, and said it was absolutely delicious.

I talked with the proprietor (you can read his story here) about non-dairy ice creams. He said he’d experimented with almond milk and almond butter before. I’ll keep an eye out for if he does so again!