I Like This Guy

I saw a new doctor today: Dr. M, a gastroenterologist with Johns Hopkins. He was great!

He listened.

He explained.

He listened more.

He asked questions.

He thought.

He suggested.

He planned.

He wants to see my gallbladder out ASAP, given that I have signs of sepsis. However...

First he wants to do an endoscopy, to see how bad my reflux is, assess the damage it has caused, and see why I might be having the reflux. He does not think the reflux is related to the pain episodes. He sees it as a separate and equally concerning issue. That's because I have it pretty much every day, unrelated to what I eat (I wake up with it), and because I am having swallowing problems. Yeah, I haven't mentioned that one on the blog. Anyway, Dr. M wants to do the endoscopy before I have the cholecystectomy, because then he won't have to wait for me to heal from surgery, and because there's still the teensiest possibility that the pain attacks are not being caused by my gallbladder. But he thinks they are.

He thinks I probably passed a stone at the ER. While I was waiting to be seen (yes, read that with sarcasm). He doesn't understand why the ER doctor did a CT scan and kept looking for other causes, given that my liver enzymes were through the roof. Oh, and the fact that there was a .9 cm stone in my gallbladder!!! "Tiny little stones just like everyone has," my butt. Dr. M thinks I might have passed a stone with each pain episode, or there might have been just one or two that have hung out in the ductwork, causing problems. One almost certainly was blocking the hepatic duct at least twice: once while I was at the ER, based on the liver enzymes on the bloodwork, and once when I had the HIDA scan. Dr. M said there might be one still just "rattling around" in there, going up to the liver and down toward the sphincter of Oddi (where the bile duct meets up with the intestines). That could be causing some of the irritation and pain I have been feeling between episodes. That also could account for the septic symptoms. When the stone blocks the common hepatic duct, the bile backs up into my bloodstream. Nice! It would also cause plain old irritation of the liver. He wasn't sure that explains my blood clotting problems, though, and he is going to check clotting factors and take a look at my platelets. He thought maybe the combination of stones and Accutane might be doing something in that area.

He sent me straight to the lab, which was no surprise. Assuming I would need to sacrifice some blood but not knowing exactly what he would want, I had fasted this morning and not taken my Accutane. He ordered lots of tests. Two were at my request: blood sugar and cholesterol, just because I've never had them checked (and as long as I was fasting anyway).

I had a wonderful phlebotomist, a grumpy old black lady who informed me that she is one of only two good phlebotomists in the area (ha, she hasn't met Dr. D, my dermatologist). When I warned her that I am a tough stick and finding a vein usually requires multiple pokes and some digging and here is a good vein, she ignored me. But she got it in right away, no digging necessary. After filling the required seven--that's right, folks, seven--vials, she informed me that whoever said I had bad veins or had to poke me more than once (um, every Navy and BYU phlebotomist) was a fool. I completely agree. I love this woman.

So, the plan is:

-December 3, I will have the endoscopy, which Dr. M will do at the Johns Hopkins Outpatient Center. Boy am I familiar with that place! Both of Laynie's CIs were done there, as well as all of her mappings.

-I will have an appointment with another Dr. M, a surgeon. This will probably be after the endoscopy. I'm hoping for the day after, but we'll see what they offer. I'm kicking myself for leaving my phone on vibrate, because I missed a call from Dr. M-the-surgeon's office about an hour ago. I called them back literally less than 10 seconds later, having just missed the call, but naturally they were closed.

-I can't remember if I blogged it, but Dr. P, the first surgeon I visited, had scheduled me for surgery for December 3. I talked to them earlier today. They needed to cancel anyway, and I was wimpy and just said that I would have to call them back after I looked at my calendar. Not going to call them back. Not comfortable with Dr. P. Hopefully I like Dr. M-the-surgeon better.

Seriously, the timing on all of this could not possibly be worse. I have three students in crisis (ok, let's be honest, it's not the kids who are in crisis), and one student in semi-crisis. I have consultation meetings, pre-meetings, IEP meetings, planning meetings, due process meetings, and observations over the next few weeks. Plus presenting at the speech meeting in three weeks, which I have not even begun to think about. Well, it is what it is. I'm glad that I told people at work that I was having some health problems. At least they won't be surprised if something pops up on my calendar and I have to miss a meeting.

Alright, now I want to blog about more interesting things. New post!

How Do I Feel?

I don't know how I feel. Confused. I met the surgeon yesterday, and he felt like I was a classic candidate for getting my gallbladder out. That's right, folks, I found a surgeon who wants to do surgery.

I'm pretty cynical about it. I don't know how much of that is my denial talking, though, because my fear is that he will take my gallbladder out and see that it was just fine. I'm afraid that going to a surgeon when you have a problem is like when parents take their child to our local children's hospital wondering if their child has autism (or ADHD, or whatever is on their mind). The child typically gets the label the parent thought they should have. Sometimes you get what you are looking for.

On the other hand, a little part of me is afraid that he will start the procedure laparoscopically, see something big, and maybe open me up. Or just close. Maybe he won't know what to do.

Here's an argument I keep having with myself (um, not aloud):

Maybe it's all in my head, and I don't really have a problem. What if it's just related to my back pain?

Hm, back pain this bad?

Well, no, but pretty darned bad.

Back pain that involves reflux and stomach pain?

The reflux might not be related to the pain. The timing might just be coincidental. And sometimes I don't feel any.

Please, you've seen larynges damaged by painless reflux. So how do you explain the lab results?

The liver enzymes could have been from Accutane.

But Dr. D (derm) said not that high. And Dr. P (surgeon) said that numbers like 72 and 151 like right now are probably Accutane. Not 300s like during the ER visit. And what about the white blood cells?

I don't really have an explanation for that. Maybe I was fighting off a cold at the time.

Yeah, uh-huh.

It doesn't happen in relation to food. Cindy says my symptoms don't sound like hers at all. Except for the mind-numbing pain, but even that is way longer than her 30-45 minute attacks.

Good point, but since when do you do things like everyone else? Dr. P said not everyone has the attacks in conjunction with fatty meals. Some people have a less typical presentation.

If my symptoms are not typical, how can he be so sure he has identified the right problem?

Umm.. well, they are typical in general, just not down to every detail. I think Dr. P said that some people have more reflux instead of the more typical gallbladder attacks following a fatty meal. It was kind of hard to tell with his accent. And Dr. P noted the abdominal tenderness.

Yeah, in the middle. Not on the right side.

Hey, Dr. P and Dr. C (family practice doctor) both said you can have tenderness in the middle with gallbladder problems. Dad said that, too.

I'm not convinced. I guess we'll just have to agree to disagree. And now the money question: how can he assume it's stones and not a tumor or cyst? Just playing the odds?

...

Do I hear crickets chirping?

So there you have it. I don't know if I'm in denial or just being a smart health consumer.

I definitely need a blessing. Maybe I'll co-opt Julie's husband. Funny coincidence: a girl I work with turned out to be a member of the church. It's just funny that we don't work at the same schools but we ended up on the Pals team together (the team that services kiddos in private preschools and daycares). Julie's husband gave Laynie a blessing before her CI surgery, because at that time we were going to the Deaf Branch, and Laynie didn't want any of them to know about her CI. Of course, now we're going to a hearing ward, and I do have home teachers... but I don't like one of them. I know it's not his fault that he has ADHD and is kind of Aspergery (no, he's never actually said that he has anything, but it's so obvious), but I'm just not very comfortable with him. Hm. I do LOVE my other home teacher, this Jamaican guy. But I think he is a Priest, not an Elder, so he can't give a blessing. He's still pretty new to the church. Sorry, people who aren't members of the church, I've probably lost you. I'll add a couple of links that might help.

I feel badly for not liking one my home teachers. Sigh.

Oh, I guess I should answer the question of how I actually feel. Not too badly. Easily tired and getting weaker all the time. Sometimes I have a persistent pain in my right side (could be my bra). Fever all morning and afternoon, going down in the evening. I don't understand that, which drives me crazy. Why does it go down in the evening? I like to understand things. Umm... when my fever goes up, I get confused and have some processing problems (word finding, organizing language), but I haven't had that so far this week. I had a minor pain attack Friday night, lasting only an hour or two. The pain didn't get as bad as the first three attacks. I'd say it was an 8 on the old pain scale, which is much better than the big attacks, which were about 97 on a scale of 1-10. Anyway, I'm doing OK. I'm supposed to hear back from the surgeon's office today. They are trying to schedule a laparoscopic cholecystectomy for Monday or Tuesday of next week.

Back in Denial

After the test on Friday and especially that night when the pain came back, I was totally facing my problems. On Saturday, when I was still feeling the aftershocks, it was hard to deny that something was definitely wrong and would need to be fixed. I even sent an email to various people I work with, warning them that I might be out at some point for surgery. Until now, I had only told Cindy, a teacher that I work pretty closely with, that I was even having problems.

Now I seem to be going back into denial, which is where I've been for weeks. This morning I started thinking that when I meet with the surgeon, he will probably say let's wait and see. Or he'll send me for an MRI and not find anything. He'll say that they just didn't wait long enough when they did the HIDA scan, and that's why it looked so bad.

My mind is playing tricks on me!

So now when I get a response to my email, I don't even want to read it. I don't want to think about it. Because I will probably have to take it back when I see the surgeon and he tells me everything is fine.

I Am a Health Hazard

My body is emitting gamma rays, even as I speak (OK, type). Cool, right?

Today I had a HIDA scan, which was not as bad as I thought, but the results were much worse than I thought. Honestly, I almost canceled the procedure earlier this week, because I thought my doctor was barking up the wrong tree. You see, I have had two episodes (well, now three: I'm coming out of one right now, which is why I'm awake at 1:30 in the morning) of what the ER doctor described as "epigastric" or "colicky" pain. If this is what babies have when we say they are colicky, let me tell you, it's no wonder they scream! I have pretty severe back pain, and it doesn't hold a candle to this.

I don't know why I haven't wanted to blog about this, and now suddenly I do. Maybe I was waiting until I actually knew what it was. I'm not sure I do, though, still.

For my HIDA scan, a very nice radiology technician or nurse or something, named Linda, started an IV (had to try two different places, sigh). Well, first she asked me the usual questions, like my name and birthday, whether I'm pregnant, and whether I still have my gallbladder. Are there doctors dumb enough to send a gallbladderless patient for a HIDA scan? You see, a HIDA scan checks the function of the gallbladder, sort of, and the condition of the bile ducts. She asked if I had had an ultrasound or CT scan, and when she heard that I had had both, she seemed to think that this test was overkill. I was still thinking yup, this test is going to be a waste of my money. Good thing I have excellent insurance.

Through the IV, Linda injected a radionucleotide, meaning some radioactive material. She explained that a camera would pick up the radiation coming from my body and track it as it moved into and from the gallbladder. When it was in the gallbladder, the second part of the test would begin: she would inject CCK, which would make my body think I had eaten a fatty meal. That would cause the gallbladder to contract, so that the machine could measure how quickly the bile emptied into the intestines. It could also "replicate my pain." Great.

So I laid in a scanner something like this, for about an hour:

The only difference was that the camera (the large, hovering rectangle) was much closer to my body. Maybe three inches from my chest. And my head was in an arc of machinery. It was a little claustrophobic at first, but I got used to it.

I laid there and watched Linda surf the web, checking out tote bag projects on Joann.com. She also spent a while chatting with another tech/nurse person. It was debilitatingly boring. Finally, after an hour and five minutes, the machine beeped, and Linda checked it. Nothing in the gallbladder. She had me lay there a while more and tried again. Nothing. She had me sit up for about 20 minutes, and she checked again. Nothing. She tried two other positionings... still nothing. She had me sit up for another 15 minutes. She tried all three positionings again and let me out of the contraption again. She said to go wait in the little waiting area in the hall while she went to show the radiologist my results. She said that they probably would not need to do the second part of the test.

While I was happy not to have the CCK and experience pain, I was thinking that this probably was not a good sign. The only thing I could think of was that the tracer hadn't made its was to the gallbladder, for whatever reason. Or that it had but was stuck in there.

After about 15 minutes, Linda came and got me to remove my IV. I was done. As she was removing my IV, she asked me again if I still had my gallbladder. Oh, my, that could not be good.

Linda said that the radiologist would take 3-4 days to review my scan and would let my doctor know, and my doctor, Dr. C, would call me. Remembering that the last time Dr. C was supposed to call me with lab results I ended up having to call her after a week and still not hearing back for another two days, I planned to call her on Wednesday.

Imagine my surprise when Dr. C called 20 minutes later. I hadn't even gotten home! She had me pull over to talk. There was no sign of the radionucleotide past my liver. Complete ductal obstruction. That's why Linda was asking if I had a gallbladder: nothing showed up there on the scan. Brother. Dr. C asked if I had had any more pain, and I really had had only minor pain since my last big episode, October 10. My fever was back all this week and I felt like my stomach was working something up the last two days, but nothing big yet. She warned that I might have another episode soon, if not from the obstruction then from the radionucleotide causing cramping. ?

Then she asked if I have a surgeon. Of course not... Why on earth would I have a surgeon? She had me take down a name and phone number. I have to call the surgeon on Monday. I still need to see the upper GI doc the day before Thanksgiving, since my reflux is still bad.

I wish I had asked if she knew why I had a total ductal obstruction. On the ultrasound, there had only been tiny gallstones. I guess the ultrasound could have missed something, or they may not have been as small as they seemed. I wonder if the CT scan should have picked them up. Anyway, there are other things that can cause a duct to be closed off, like the big casino. But I'm operating under the assumption that it's not that serious. What other assumption can I operate under and remain functional? There are other possibilities, too, but a nasty old gallstone parked in a duct is the most likely culprit.

So, as I mentioned before I'm coming out of a pain episode, which lasted about four and a half hours. I'm getting better at dealing with them, but boy, does time crawl by. At least I don't have to go to work tomorrow.

I put in a call to my dad. He's a nerdy physician assistant. I trust him more than most doctors. I do hope my doctor is a good one. At least she was observant enough to notice that my liver enzymes on the ER bloodwork were both over 300, which the ER doctor either overlooked or chose not to pursue.

Here is "me looking on the bright side:"

-I have great support from Laynie and Katie.

-I'm sure that the administrators and other powers that be, with both my employer and my current placement, will understand. (Not pay me for not working or anything, but at least not give me a hard time if I need to leave work with pain or take a few days off for the surgery.)

-I have excellent health insurance. Whew.

Birthday Bug

Happy birthday, Laynie!

Yesterday was Laynie's birthday, and Katie came over to celebrate it. We had strawberry cake, which was a first for all of us. Very sweet. We also played DJ Hero and searched for a poem for Katie to perform for her ASL Linguistics class. This involved a discussion of how evil Katie's ASL Linguistics teacher is (very). Fun times.

The cake... I regret using store-bought black and red frosting for decorating. They were so difficult to work with! And they had an oily look to them. And the decorating tips were crap. I've learned my lesson: no cutting corners, I will make all of the frosting next time.

I enjoy decorating cakes. I haven't taken a class on it, but my mom did when I was a baby, and I grew up watching her decorate cakes. I learned by watching her. I remember that the first cake I made and decorated was when I was about 13 or so, and it was for my dad's promotion to Lieutenant Commander. I drew the rank insignia on a sleeve and wrote Congradulations (sad). Unfortunately I do not have the picture of that cake readily available, and I could not find a good picture on the internet of Lt Commander sleeves, but I found one of shoulder boards, which is basically the same thing. Fat line, skinny line, fat line.

Now I'm going to have to look for that picture when I get home from church. And I will have to take a cake decorating class one of these days, because it's so fun.

What's in a Name?

I was at Target this morning, and my cashier called out to a nearby cashier to say that her cousin Britain had named her baby KaDymond (sounds like diamond). After seeing the incredulous look on my face, she explained that Britain already had a little boy named KaDante, and she wanted the names to rhyme. To her credit, the cashier was horrified at her cousin's baby-naming habits.

Later, I was at Giant (supermarket), and I saw that a celebrity had named her baby boy Sparrow. The woman behind me spotted the same magazine and picked it up, wondering aloud what that celebrity was thinking. I commented that it was better than a food name, like Apple. She mentioned that another celebrity had named her son Puma. I told her about KaDymond, and she pitied that child. She explained that she is a social worker and see a lot of interesting names. One of her colleagues recently was called in to check out a family with six children, all of whom were named after liquor. Can you imagine? Hennessy! Stop bothering Stoli!

Listen Up

The essentials: glasses, iPhone, CIs.

I said before that I have been impressed with the way Laynie has used her CIs all day everyday since getting them (February and August). It's especially impressive considering that she hasn't really benefitted from them since June.

In May, Laynie began having problems with her first CI, the one on the left side. She had pain during a mapping, and it caused problems after that with tingling, discomfort, and sometimes jabs of pain. Not really knowing what the problem was but assuming it was related to the amount of stimulation, her audiologist turned her down. When I say "stimulation" and "turned her down," I'm talking about electricity running through her cochlea, in close proximity to sensitive nerve endings. People are bound to run into problems with this sometimes.

The audiologist kept turning her down more and more, hoping that would solve the problem. It didn't. But things got quieter and quieter for Laynie. She was missing many speech and environmental sounds. She could no longer hear birds or bugs. She lost S, F, TH, and more. We stopped doing therapy in August, because it was just an exercise in frustration. And then, about two weeks ago, the tingling and discomfort stopped, pretty much overnight. A day or two after that, Laynie had a mapping session, her one-month mapping for her new CI. Her new CI was also quiet, because the audiologist wanted to keep them equal. It turned out that she had been hearing at about 60-65 dB. No wonder she was missing so many sounds!

At that mapping (about two weeks ago), she asked for more sound. She missed all the things she was able to hear a few months ago but had not heard all summer. She got her wish, with hearing levels at about 30 dB. But she feels like she started hearing even better a few days ago (funny that things will change a week or so after mapping). She still wants to hear MORE, especially on the right side. Her next mapping will be the first week in December.

See? Better.

Just for kicks, this is what fun, colored coils look like. I love that she chose blue for the left and red for the right. An audiologist's dream come true.

Now you see them...

Now you don't!

She definitely is hearing better since this past mapping. I can use a normal voice and she turns to me. And she hates my cough again, ha. Yesterday, she was asking why I-695 is so much quieter than I-795. I had honestly never even noticed. As we drove to Target this morning, I realized that she is absolutely right. The only thing I could think of was that it might be because I-795 is made of concrete, while I-695 is paved with asphalt. Her speech is improving again, as well. She's using more final consonants, making nicer vowels, and her /s/ blends are sounding quite good. She told me to STop today, which was dah or dop preimplant. It's so nice to see her making progress and hearing new things again, after her four-month plateau. I guess it's time to get back on the horse with listening therapy.

Yesterday, I saw Laynie checking out the Phonak website, comparing the different FM transmitters. She liked the ZoomLink:

Of course, she wouldn't wear that, so I don't know why she cares about the transmitter. That's for the person speaking to her. She would use the little plug in MicroMLxS or MLxi or whatever. I've been thinking about FM systems since playing around with one with Laynie a few days ago. It seems like it would be perfect for her, because she doesn't need to hear a lot of people at home, just me. It would be nice to have one while out, so that she would be able to hear despite wind, crowds of people, noisy traffic, etc. The world is just full of challenging listening environments.

Too bad those things are so stinking expensive!