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.)
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.)