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Appointment at JHU - Karen's Musings
Random Rambling
Appointment at JHU
The appointment with Dr. S at JHU was definitely worth the wait. She had a lot of good thoughts for moving forward:

- First, she said not to lose hope that the gastroparesis may just resolve on its own over time with no rhyme or reason to it.

- She thinks some of the nausea is related to the gastroparesis and some may be related to hormone wackiness. I have polycystic ovary syndrome (PCOS), which can wreak havoc on hormonal balance. She'd like me to talk to my OB/GYN about getting back on metformin, which I'd taken before I was pregnant (PCOS is linked with insulin resistance, so metformin tends to help reduce the symptoms and restore hormone balance). She's hoping if I get that under control that it will help relieve the nausea. She also noted that the PCOS is probably the reason I'm not losing weight despite barely eating.

- She said that with most motility disorders your gut is essentially "confused". Throwing up for 8 months while I was pregnant with Tobie probably started a vicious cycle. She said your gut kind of gets stuck in a pattern. The more you throw up, she said, the more you throw up. To that end, she wants to see if she can get me out of this pattern for now. She's suggested that I revert back to a completely liquid diet. She said to try to drink 3-4 ounces of ensure/boost/carnation instant breakfast every 3-4 hours. Even if I don't like it, I should just think of it as taking medicine and force it down. Fair enough. While I wasn't able to keep Boost down when I tried it before, I got some Carnation Instant Breakfast and Ensure and both are easier to stomach.

- Even though the botox wasn't a miracle cure, the fact that it did any good was a great sign. She said with the botox injections, if you hit the exact right spot, it can cure a person forever. If you hit *near* the right spot, a patient can have relief for up to 3-4 months. Unfortunately, there's no map, of course, so there's no way to know if you've hit the right spot until you do. She recommends continuing the botox injections every 3 months. I had my last botox injections in October, so it's about time to try again. She said not to add back in solid food until after trying the botox again.

- She gave me a referral to Dr. E who does their gastric pacer surgeries. She said that by meeting with him now, we open that door so that if the other things don't work, we don't have to waste time waiting around for a consult with Dr. E.

- She's ordered a 4 hour gastric emptying study with solid & liquid combined. That's scheduled for 2/25/2011. She also ordered UGI/SB xray series. That is scheduled for 1/19/2011. She said both will give a better idea of where things stand now, but are also both typically prerequisites for a consult with Dr. Eckhauser, so it's worth getting them out of the way now.

- She suggested changing my exercise routine to add in 3 10 minute periods of continuous walking. She said the idea is to encourage gastric emptying any way we can, and gravity may help us out here. This should be relatively easy to incorporate into my routine.

- She said to empty the Nexium capsules into applesauce and eat them that way. She's concerned that the Nexium could just be sitting in my stomach and not doing me as much good as it could be.

- Interestingly, she didn't suggest that the narcotics are the culprit. She asked if I really needed them: "would you be down for the count without them?" Yes. Then I should keep taking them, she said. She just said to stop taking the narcotics and the domperidone (if possible) for 3-7 days before the gastric emptying study. If I have to take the domperidone in order to guarantee that I can keep down the food for the study, then so be it, but it would be preferable to get it out of my system first.

Overall, it was a very positive appointment. I admit having been skeptical that there was really any point to the consult - and I really expected her to say that I had exhausted my non-surgical options, but it was nice to hear that she had some simple strategies to try and improve my quality of life in the meantime, even if the surgical options turned out to be the right answer in the long run.

I'll be following up with her on March 3rd once all the other testing is complete.  

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23 comments or Leave a comment
From: proudestmom Date: January 6th, 2011 06:36 am (UTC) (Link)
wow! amazing news! hope you get all the help and relief you can and she is the right shaliach
estherchaya From: estherchaya Date: January 6th, 2011 02:29 pm (UTC) (Link)
I think she is the right shaliach. She's got plans for how to improve my quality of life, and she's keeping all options open for when/if non-surgical options fail to be a miracel cure.
marag From: marag Date: January 6th, 2011 02:07 pm (UTC) (Link)
::fingers crossed:: She sounds sensible and organized and on the ball. Hooray!
estherchaya From: estherchaya Date: January 6th, 2011 02:28 pm (UTC) (Link)
she was fantastic. But... I think she's younger than me. That's just WRONG. Doctors should be older than me. I'm... getting old! (Younger doctors have more thorough, rigorous training and are more up on the current medicine, so I'm not ACTUALLY complaining!)
arosoff From: arosoff Date: January 6th, 2011 02:07 pm (UTC) (Link)
I'm glad she was helpful, and that you might be able to avoid surgery!
estherchaya From: estherchaya Date: January 6th, 2011 02:27 pm (UTC) (Link)
I think it's unlikely that I'll avoid surgery, but even if the things she's suggested aren't a miracle cure, I do believe they will improve my overall quality of life.
mortuus From: mortuus Date: January 6th, 2011 02:22 pm (UTC) (Link)
I'm so happy there is hope and options!
estherchaya From: estherchaya Date: January 6th, 2011 02:27 pm (UTC) (Link)
me too.
real_bethy From: real_bethy Date: January 6th, 2011 04:28 pm (UTC) (Link)
I'm so glad that you have some things to try out now!
estherchaya From: estherchaya Date: January 6th, 2011 08:22 pm (UTC) (Link)
me too. They're all things I've tried before (with a couple minor exceptions), but not as part of a comprehensive, well-thought-out plan.
pocketnaomi From: pocketnaomi Date: January 6th, 2011 05:53 pm (UTC) (Link)
When I have to drink such stuff, I find the dark chocolate Ensures to be tolerable. YMMV and almost certainly does, of course, but just offering data.n
estherchaya From: estherchaya Date: January 6th, 2011 08:21 pm (UTC) (Link)
good to know. Though I can't really have chocolate, particularly dark chocolate, as it gives me migraines.
pocketnaomi From: pocketnaomi Date: January 6th, 2011 08:33 pm (UTC) (Link)
Sorry to hear it. Never found another flavor I liked, but I hope you can. Meantime, I'm really glad that this doctor seems to have ideas to try!!
eyelid From: eyelid Date: January 6th, 2011 07:06 pm (UTC) (Link)
It makes a lot of sense to me that your body may have just knocked itself out of whack with the pregnancy and that it's having some trouble getting back in whack. Like hiccups or something.

what are the narcotics for?
estherchaya From: estherchaya Date: January 6th, 2011 08:05 pm (UTC) (Link)
I take narcotics for several things. First, for migraines (usually Tylenol #3). It's not a preferred treatment, but it's what I've got that works right now, as I stopped taking a prophylactic when I got pregnant. Second, every time I eat (sometimes even when I just drink something thick), I am in excruciating pain - I take dilaudid for that. Percocet would probably do just fine, but my doctor was trying to avoid overloading me on the tylenol, which is why he went to dilaudid (it's a beautiful drug). And in the short term - I had hand surgery this week, so I was prescribed vicodin for that pain (I haven't even picked that up, but I could theoretically have taken i recently).

It's a lot of narcotics. And narcotics can affect motility, so some doctors have the theory that it's the narcotics causing my gastroparesis. Except that I had the gastroparesis prior to taking all the narcotics, and it doesn't get any better when I stop taking them.
kalki From: kalki Date: January 6th, 2011 08:18 pm (UTC) (Link)
I am happy to hear that you had a good appointment hon!
estherchaya From: estherchaya Date: January 6th, 2011 08:20 pm (UTC) (Link)
me too. thanks!
From: have_inner_lady Date: January 7th, 2011 02:10 am (UTC) (Link)
I'm so glad that some options short of surgery may help. And I am more glad that you have a quick-minded, thoughtful doctor planning out what to do and from this point on. May things sail smoothly from here to your recovery, whatever the direction of recovery may be.
estherchaya From: estherchaya Date: January 7th, 2011 12:28 pm (UTC) (Link)
I think the options short of surgery will improve my daily quality of life - but I think it's just as likely that I'll still need the surgery. I can live with that.
skatured From: skatured Date: January 7th, 2011 04:27 am (UTC) (Link)
I hope these changes help. I can't imagine how much i would suck to feel so lousy every day.
estherchaya From: estherchaya Date: January 7th, 2011 12:27 pm (UTC) (Link)
it sucks a lot!
From: atimesif Date: January 7th, 2011 10:23 am (UTC) (Link)
Wow, so thorough, focused and knowlegable! I like her!
I'm glad the appointment was so worthwhile. How was the traveling to Baltimore? Can you do the testing that she is requesting locally?

What's with the hand surgery? As though you don't have enough medical issues?!

Thanks for keeping us up to date! I hope one of these ideas leads you in the right direction.
estherchaya From: estherchaya Date: January 7th, 2011 12:27 pm (UTC) (Link)
I've had carpal tunnel syndrome in both wrists since I was a teenager (I used to be a musician). Once I stopped playing (due to a severe wrist injury probably exacerbated by the existing damage in my wrist), the carpal tunnel got significantly better and really only bothered me if I knit or crocheted, or other small hand-work. But while I was pregnant with Tobie, it became unbearable and never let up after I delivered her, despite all assurances to the contrary. So I just had my right hand operated on and will probably have my left hand done in a few months.

Traveling to Baltimore was fine - her office wasn't downtown, plus Seth took me. :) The testing needs to be done in baltimore - and the outpatient services building (where the testing is done) IS downtown. I may have to purchase a GPS!!

I like her too!

And yes, I have more than enough medical issues.
23 comments or Leave a comment