Scope Me Baby, One More Time

(Hey, it’s better than Schlag mich Baby, noch einmal, right? Right? A little bit at least?)

I made it through the first round of testing in San Francisco! I survived my second endoscopy, without any crazy improbable drug reactions!

Like I posted before, I had my gastric emptying study on Wednesday. I ate the radioactive eggs and drank the nuclear water and it all left me stomach in a timely fashion according to the estimates. We don’t have official numbers from the radiologist yet, but my gastroenterologist said they looked good, though were subject to change. And I didn’t throw up during the test, which is the key thing.

In a way, we didn’t really learn much from that test. I’d had one before in Chico, though it hadn’t measured liquids, and it looks like the numbers are going to end up right around the same as they did in that test. But we will have ruled something really important out: gastroparesis. A girl in my town had gastroparesis and she ended up having to get botox shots in her stomach (in Ohio, because she was under 18 and not many places treat it) and at CPMC they insert pacemakers into people’s stomachs for gastroparesis. At least cyclic vomiting is usually treated without surgery. (I’ve already unsuccessfully tried the main drugs they use to treat gastroparesis, with bad side effects and not much difference in my stomach.) What I did learn is that I really need to be realistic about what I plan to do in the hospital during long tests or when I’m sick. I.E. don’t bring 800-page books about crazy English toffs. During the half hour, hour, and two hour long breaks, I wandered around a bit, went to the cafeteria with my parents to get food (though that got old because I couldn’t eat and the smells were making me hungry), and sat around in the lobby flipping through magazines and looking at websites on my phone. It’s not easy to concentrate when there are lots of people talking and you’re nervous and everything. This time, when I’m going down, I’m going to bring some audiobooks on my iPod and a crocheting project and some other low-energy-requirement entertainment.

At least CPMC has some amazing views.

 

The shot I wish I had gotten was when a transport guy wheeled me around a corner on Thursday and I saw the Bay, the Golden Gate Bridge, and a huge swath of the city from the sixth floor of the hospital (which is on top of a steep, very San Francisco hill. Um, how do people run in that city?!)

The test was done by noonish, so we headed back to our hotel room. We were staying in an apartment-style suite so we had a kitchen and everything, which was incredibly convenient for me considering that I can eat about three things. I was able to bring my own eggs and bread and crackers and turkey and juice and such and eat some of my meals there. That helped. I then rested for most of the afternoon — the test and the drive down the day before had taken a lot out of me.

Unfortunately, Wednesday evening I got sick after dinner. It definitely wasn’t the food, because I just had grilled chicken and cous cous and I’d had the exact same thing (same sauce, from the same place) the night before and been fine. Unfortunately, my stomach does not seem to allow me to go more than a couple days without staging an uprising…It was not fun, especially being in an unfamiliar place and knowing I had a procedure the next morning. I took solace in the fact that I would undoubtedly be getting an IV the next morning and I could get them to put a liter in while they were at it. And IV Zofran. I do not turn down IV Zofran.

The next morning I arrived at CPMC bright and early at six o’clock in the morning. I got checked in in the Stanford Building, which is a sort of annex off the main hospital. The weird thing was that when I checked in, the receptionist told me I owed almost 2000 dollars!!! They had not informed me of that when I pre-registered over the phone. (It turned out that it was just because insurance doesn’t automatically cover anesthesia for this kind of procedure — it normally only pays for Versed — unless it’s medically necessary and it had to review the medical necessity of my having monitored anesthesia care. Luckily, we got a letter a couple days ago saying that it had been approved. Documented adverse reaction to Versed = pretty obvious medical necessity for something else.) I seriously have no idea how people manage if they don’t have insurance — or even how many people manage with it.

I got taken back to a bed to change into the typical massive gown. They’re actually really awkward to tie when they get to a certain size. Once I was changed, my parents came in and a nurse came to start my IV. She had a lot of fun typing in my drug allergies, particularly when we told her Tega-Derm, which is the stuff they use to cover IVs normally. She said it was the only thing the hospital had. We even told her all the alternatives we have on a list my mom now carries to all these kinds of things, but the nurse said they didn’t have any. She ended up basically just putting on about ten layers of tape.

A transport guy rolled my bed up the sixth floor GI lab in the hospital, thus rendering my previous mine freak out about not having the procedure in the hospital utterly pointless. I met my new nurse, Aletha, who was with me the whole day and absolutely amazing. She went over exactly what would happen to me during the procedure (endoscopy, inserting a catheter with a balloon into my stomach, and then several hours of testing after I woke up.) Part of the testing would involve my having to drink a can of Ensure, so we warned her that I have a slight (i.e. consistent) tendency to throw up every time I drink Ensure…or even just smell it because it’s going into my NJtube. She said she’d give me some Zofran before I had to do that part of the test to see if we could stop it. She also asked when I last threw up and when I told her it was the night before, she said she’d give me a liter after the procedure. 🙂 (My rule: if you’re going to put an IV in me, you’d better at least give me a liter. I’m looking at you, Enloe ER.)

I talked with both Dr. Shetler (who I swear has the best bedside manner ever — she was incredibly reassuring) and the anesthesiologist before the endoscopy. The anesthesiologist was a little concerned by my previous drug reactions and my weird paralytic episodes since. (My first exposure to him was hearing him exclaim, as reading my chart, “An adverse reaction to BENADRYL?!” That was reassuring. Also, I heard Dr. Shetler explaining periodic paralysis to him.) But once we’d explained what had happened in the past, he decided to give me Propafol and monitor me closely. In fact, even after I came out of the endoscopy, he kept checking in on me to make sure I hadn’t gone paralytic or anything.

I went into the room where they’d do the endoscopy and I think Dr. Shetler could tell that I was nervous (my systolic blood pressure was in the 120s, which, yeah, doesn’t happen so much.) Like I said before, she was incredibly reassuring and a great calming presence. She also told me I could have my mom in for the post-endoscopy testing. I heard her explaining to someone that they don’t usually let adult patients have someone in with them, but that it’s good to do it for the young ones like they do for the pediatric patients. I thought that was really nice of her.  The anesthesiologist came and gave me Propafol, I felt really weird for a minute, and then I was out.

When I woke up, I had a big tube in my throat and taped to the inside of my cheek. Aletha said most patients gag a lot at this point and they have to give them a med to stop them from doing so (so that they don’t disrupt the balloon.) I didn’t, for which I credit my NJ tube experience. After six weeks of that, you get pretty used to having a tube in your throat. I guess the experience is good for something after all. (Well, that and the whole, you know, medical stabilization thing.)

You can’t actually see the tube here. Or the EKG wires. And my oxygen nose thing is out. I felt like I had so much plastic coming out of me….Sorry about the sad face, I think I was in pain at this point.

We started with a part of the test where the balloon inflated with air and I was supposed to say whether my stomach hurt, felt nauseated, or felt full at various points. It was the part of the test designed to test for visceral hypersensitivity, I believe. It only hurt at the very end, when the balloon was the most fully expanded. I’m not sure if that means the test was positive or negative? I guess I’ll find out Thursday.

For the next hour or two, I just had to lie on my back while the test registered things. (Really specific, yeah. Sorry. I’m doing the best I can considering that I’m not even 100% sure which test I had or what it’s called.) I got some Zofran at a certain point both because I felt sick and to prepare for the Ensure.

My throat also hurt quite a bit — much like having the NJ tube newly in — and when I first tried sip the Ensure, I had a really hard time swallowing. However, unlike when I got the NJ in and just ended up sitting there crying and not really eating, I got pain medication. Aletha had to talk me into it a bit — I’m not a huge fan of meds, in case you couldn’t tell — but I have to say it was really, really worth it. Fentanyl didn’t even make me feel all that funny and it took away the pain. After it kicked in, I went back to the Ensure and got the whole can down. I had a good feeling, because with the oxygen blowing into my nostrils, I didn’t smell it as much. I didn’t even feel nauseated.

I stayed lying there for a few minutes until I suddenly felt funny. My heart monitor started beeping like crazy and the top EKG line went all wonky and my heart rate pretty much doubled. Then, all of a sudden and without any real nausea, I threw up all over my chest and hospital gown. I couldn’t sit up and my mom had gone to look at the EKG, so there wasn’t anything else I could do. She came back over and gave me a bag and I kept throwing up. (Side note: while I generally find CPMC a pretty fantastic place, their GI lab seriously needs to get better, um, receptacles. Big basins > little blue bags that don’t hold very much and have narrow entry points. You’d think a GI lab would understand these thing!) Aletha came back and gave me a shot of intramuscular Phenargan. I just kept apologizing because I felt really badly and worried that I’d messed up the study results by throwing up, but everyone kept reassuring me that there was nothing  I could have done. I mean, I’d even taken Zofran an hour before! IV Zofran. I got another half a liter at this point, just to ward off dehydration.

For the final part of the study, I got a shot of Imitrex, which is actually an anti-migraine medication, but apparently it does something interesting to your stomach muscles. Shortly after that I fell asleep. I got a nice nap in before Aletha woke me up and told me that the test was done. She said that Dr. Shetler said it looked like they got enough data in from before I threw up, so hopefully that worked out. She gave me a last hit of IV Zofran for the road and wished me well. She was very sweet and a great nurse throughout the whole thing. 🙂

The discharge instructions were pretty easy, and undoubtedly recognizable to anyone who’s had an endoscopy: no driving or signing contracts for a day, go to the ER if you throw up blood, advance diet as tolerated. Pretty straightforward, huh?

Yeah. About that last one.

Unfortunately, since Friday, when I came back to Chico, I haven’t really been tolerating very much. I’m in that awkward stage where I’m keeping down just enough food and drink to stay minimally hydrated but I can’t handle much. I’ve also been pretty exhausted — I slept a ton on Friday, and in the days that followed I’ve just lacked energy. I cannot wait for some answers and treatment to stop this horrible…cycle? Disease? Whatever you want to call it. But I’m hopeful that I’ll be getting the answers I seek very, very soon. 🙂 One more test and my followup on Thursday! I’ll keep you all updated!

Oh, and if you’re an American and live where the polls are still open and haven’t yet, GO VOTE!

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A little more desperation than whimsy these days

Hi everyone,

This is pretty much the long version of my Facebook status update about my being sick and unable to come back to Bryn Mawr for the fall semester.

I’m writing this because I’m realizing that opening up about all this feels good…and is also really necessary at this point. It’s also an easy way to communicate what’s been going on to a lot of people at once.

So, I’m sick, and I haven’t really been talking about it to most people, and I realize I’m at the point where I kind of need to. First up, let me say that I don’t have cancer or anything fatal. But I’ve been sick for a little while too long to just not mention it. (Also, this is a disclaimer saying that if mentions of vomiting make you squeamish, you should probably not read this.) (Also, this is totally tl;dr. Sorry about that and really don’t feel obliged.)

Some of you (mainly Oxford people) know I got sick in May. At first, it looked just like a regular stomach virus – there was one going around Teddy Hall, according to the nurse, and my symptoms seemed to match it perfectly. The virus seemed to have two durations – some people (lucky, lucky people) had it for 24 hours and some people had it hang around a little longer, maybe a few days. By the time I saw the nurse, it was clear that I was in the latter group, but that was okay – nothing really to be worried about, whenever I got a stomach bug it always lasted longer in me than most people. But by the time I saw the nurse for a second time, having had the virus for more than a week, it was beginning to look like something more was going on.

This wasn’t the first time I’d had something like this happen. The summer before 7th grade, I got sick on a trip, got better for a few days when I got back, and then got far worse. I ended up being hospitalized after throwing up for about ten days. I was better for a few days after that, but then I kept getting sick again. That summer, I spent more days throwing up than not and had trouble finding medications that worked (or I could keep down.) The doctors ran a lot of tests and found some things that were off, like the amount of time it took my stomach to empty during an episode, but nothing to explain why those were wrong. Eventually, I started slowly getting better, though I still had some episodes and my energy was considerably lower than usual. I had a similar recurrence the following spring a little while after I had a concussion, and again eventually things went back to normal.

Normal for me, that was. Over the last six months, I’ve increasingly become aware of the fact that “normal for me” really wasn’t all that normal. To begin, my parents, a variety of friends, two doctors, a nurse practitioner, and a dietitian have all confirmed that your stomach shouldn’t hurt after eating. Mine has hurt after eating as long as I can remember. (Just a little PSA: anytime you’re talking about things in terms of “normal pain,” it’s probably not so normal.) In addition, it’s increasingly looking like I’ve just thrown up way, way, way more than normal – it’s not really normal to have every head cold, delayed meal, or sensory overload end that way. (Or to have all too many airplane rides, movies that should have been shot with steady cams, or late nights do so.)

So, this summer I’ve been really quite sick. There have only been a handful of days where I’ve felt totally well. However, I have had spells of nearer normality – I’m often able to eat in the morning and afternoon, only to begin throwing up in the evening. I should probably mention that when I say I’m throwing up, I don’t mean once or twice, unless it’s preceded by a “barely” or “just once” kind of disclaimer. I’m talking more like throwing up fifty times an hour at the peak. (Yeah. Not fun.) I’ve also had a lot of dizziness, vertigo, sensitivity to light, visual changes, and other migraine-like symptoms during my “episodes.” At first, my doctors thought I had post-viral gastroparesis (delayed stomach emptying), thinking that the neurological symptoms stemmed from my dehydration and lack of nutrition, and that I had a handful of food allergies/intolerances/sensitivities that had been causing the stomach pain in between. A gastric emptying study showed that, while I may have clearly been exhibiting gastroparesis during my episodes, I didn’t have it all the time. (There should be less than 10% of what you ate in your stomach four hours after eating, according to my test results. I had nine on the day of the test, but I’ve also had episodes where I had enough to throw up for three hours straight when my last meal had been six hours previous. Or when I threw up clearly identifiable food from the previous night first thing in the morning.) So, it appears whatever I have, it’s of some kind of episodic and cyclic nature. Put that together with my neurological symptoms and a family history of migraines and it’s possible that I have some kind of severe variant of cyclic vomiting syndrome – well, it actually looks like I definitely have some version of that normally, so it’s a matter of seeing whether this current stuff is part of it or not.

I’m going to see what amounts to a sub-specialist at California Pacific in San Francisco in about a month, so hopefully I’ll get more of a diagnosis and plan for treatment then. (Yes, it was originally Stanford, but my GI doc suggested Cal Pacific because the motility program is much larger there.) I’ve been working with my internist and gastroenterologist locally and will continue to do so. After ending up in the ER and hospital three times in less than two weeks, and having lost way too much weight, I’ve ended up on a nasojejunal (NJ) tube.

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Maybe I’ll write some other time about that experience. I’ve had it for a little less than a week now, and it’s been interesting. I’m not saying it’s like having a permanent visible disability (it helps a lot having the knowledge that it’ll be gone, hopefully in a couple of weeks

It’s been a rough summer, especially since even when I’m not in the midst of an episode, I’m usually recovering from one and therefore exhausted and not able to function like I’m normally. It’s meant that my summer (and the end of my final term at Oxford!) has been spent disproportionately in bed. (Or a doctor’s office. LOTS of doctor’s visits.) I’ve listened to the Harry Potter audio books a lot while unable to read or watch TV, so that’s been fun. J And I’ve discovered some awesome new foods – almond butter? Yum! Buckwheat vegan cookies? The best! But there have been times when it’s been really frustrating and I haven’t wanted to talk about it, especially since I see and hear my friends off doing fabulous, worthwhile things and I gave up on being able to even prep for the GREs a couple months ago. Plus, there was the whole coming to terms with having to take a semester off. (It was supposed to be a great semester! Reuniting with my friends after study abroad, thesis, all the special senior stuff! Still, when you’re sick….) It has also been isolating. A lot of that, to be honest, has been self-imposed – I haven’t felt up to seeing people and I’ve avoided communication to a certain extent because I wasn’t ready to go through telling people about how sick I was, but I was still too sick to not explain. It also takes energy to interact with people, and that’s energy I already have. But I’m getting over that and coming to terms with this illness. So call me! Or Skype or write to me or stop by to visit if you’re in Chico!

Love,

Jordan

(P.S. Sorry for the tl;dr-ness. I did not realize it would happen quite like that!!!)