HIDA Scan That Would Not End

Thank goodness I have someone visiting who can just up and toddler sit for 5 hours because the two hour HIDA scan? Went on and on and on.

My gallbladder wouldn't dump the radioactive dye. They had me walk. And walk. Jump up and down. Go to the cafeteria and sniff food in the hopes of prompting the gallbladder to empty. I got in a full 30 minute workout trying to get that stuff to move.

Two hours later, it finally started to empty. Emphasis on started. They went back and forth trying to decide if the dye had really moved into my small intestine or not. The doctor said no. So I had to walk some more. Then three nuclear techs hemmed and hawed over the films (video?) and, finally, everyone agreed it had moved.

So they did the CCK thing so they could measure the gallbladder ejection fraction. For something that was previously so sluggish, it did manage to contract and move stuff along with the CCK.

I was released four hours later only to return because I bled through the band aid and all over my shirt. Of course I wore a nice shirt. Which is now ruined.

While it is not normal for the dye to take 2 hours to clear the gallbladder, that doesn't mean the HIDA scan is abnormal.

Place your bets. Will the HIDA scan show the gallbladder has to go? Or is it just a GERD gut motility thing?

I bet the HIDA scan will be normal. I think it's probably a gut motility issue.

On the upside, the test reproduced the appendicitis symptoms so now I know I feel that way when the gallbladder isn't emptying like it should.

Make Up Your Own Title As I'm Stumped Pickle Time

Edited at the bottom of post.

Okay, this is just wrong. My body keeps trying to fall asleep on me. I don't feel particularly bad or anything, but my body wants to make like Rip Van Winkle.

I skipped one day of exercise. Probably will miss today too as the house needs to be cleaned and I will be too tired after that to do much.

There is the occasional flank pain/twinge, which let's hope it's just that those nerves have learned to fire that pattern and are doing it just for fun.

Maybe I should eat? I'm not hungry right now though BUT sometimes those sugar lows kill my appetite. Although I just had breakfast an hour ago.

I don't know. Feeling not too bad but not too good.

There was finally some weight loss after 6+ months of nothing. Just in time for me to eat birthday cake and mess it all up. Sigh.

The HIDA scan is tomorrow. I am crossing everything it helps find a solution. A few days ago, the gut kept me up and googling, until 2 am, trying to discern whether I needed immediate medical care or not. I voted for not and the gut calmed down eventually, but it's still there, ready to pounce at the slightest provocation.

Edited: I ate, it didn't help. My BP is low, not completely tanking but 100/60 ish which is low for me. I am also symptomatic of low BP and feel like I'm being sucker punched (aka adrenals are pissed). So drank 3/4 cup pickle juice followed by a square of toffee (12g carb). Let's hope that turns it around because I need to clean the house.

Just to make it more fun, the toddler is bleeding to death. She fell. (Of course!) She's phobic about band-aids. I finally got one on her after an hour of trying to soothe the hysterics (unsuccessful). She has now bled through the band-aid. (Of course!) Up next is the big sterile gauze pad which I'm pretty sure will cause her to hyperventilate and scar her for life.

Wish me luck.

Mini Tank

After four days of exercise and yesterday's a-g0-go-go, I am tanked. Just a wee bit.

We were up a 8am, I exercised, we drove to visit relatives, 2 hours of mall walking, home and then a movie, bed at 1am. Looong day, but my energy was good throughout. I felt really normal and the contrast of then vs. now was quite the revelation.

Today, however, it's the usual couldn't get up. It's taking me a long time to feel awake. Some heaviness in my limbs, but not as much as I've seen before. There's also some wheezing and loss of voice, which came out of left field.

So we're taking it easy for today. Running to the DMV for my sticker since my birthday is coming up and then taking the toddler to the pool.

Baby steps.

Picture This

Once again, I should be cleaning the house since guests are about to arrive, but here I am procrastinating. Lucky you.

As part of my effort to exercise myself into the SAI hole again, I went for a walk today. (I have exercised and promptly taken a nap for the last three days straight, go me!) Brought the fam with me for a bit. The toddler was not happy about it, but then we saw some deer and her sense of adventure took over.

I did not get great pics of the deer. (It figures, when I don't have a camera, they are up close and personal, when I do, nada.) Last week they were maybe 15 feet away, this week, they were quite skittish. I did see the babies again though. They are getting big!

I keep hoping I'll spot a fox again after having a very close, sustained encounter with one. Although they are nocturnal and not usually up during the day unless food is scarce.

Oh, almost forgot to tell you about the biggest discovery. I call it the Fairy Queen's throne! The toddler had to go to swim class (aka Attempted Drowning 101 as she spends most of it underwater forgetting to breathe) so she didn't see it. I hope to take her though and we'll pick some wildflowers to leave on the throne.

Doesn't the picture just spark your imagination? Or was all that fresh air going to my head?

And then I took pictures of a busy bumble bee and some flowers.
.
I caught the bee in mid-flight, click to enlarge so you can see.
.
.
.
.

.

Not sure what the bugs are in the daisies. Midges? Mosquitos? Gnats?

Latest Am Cortisol Results & Other Things

Am cortisol drawn earlier this week was 11. I was told anything over 10 is considered normal. However, there are, as usual, 50 different ways to interpret the results.

Here.

Here.

Here.

Just to name a few. There are many, many more. Both for and against.

My take? Remains the same. I am okay to be off steroids, but not quite up to full production capacity and the HPA axis is still somewhat unresponsive to demand. The endo obliquely alluded to that in our short phone conversation.

I am realizing though, if my take is accurate, this may be SAI or a recovery. It could go either way. I hadn't thought of it that way before. I just assumed the HPAA would ramp up, but I guess it may not.

I am also underwhelmed that the am cortisol level isn't higher than it was in December when we did the first ACTH test. It's actually a bit lower, although probably still within the realm of normal fluctuation. I was hoping for a 15 (I've heard of endos that say you'll feel like crap at anything below 15 and I believe it!).

Nothing changes. I push myself to live as fully as I can so that, if I tank, it will show up on the ACTH test. The endo says from here it depends on how I feel. I didn't pursue that statement, but I infer that it means I could take steroids if I needed them? Or maybe if I still feel slow and sluggish they would do more testing? Wish I had thought to ask for an elaboration.

As for the gut, it has finally calmed down. My gallbladder ( I assume) is still bouncing around in there, causing a lot of sensation on the right upper and lower quadrants of my abdomen (it often mimics appendicitis and/or being skewered for shish kabob for some reason) but the heartburn seems to be under control. 40mg of Nexium seemed to do the trick. There's a lot less bloating and inflammation in the GI system than there was...so progress.

With regards to the writing, for those of you who asked to read...ummm. That's a hard one. It's kind of like asking to see me naked. Also it is very cheesy smut because that's what sells. Plus, it was what I had in my backlist to develop.

I am working on a project that will probably intersect with anything of mine that is published, so if you follow that when it's up, you'll likely encounter any books I have out.

Endo Appt Minutes

I should be cleaning the house, which got pretty trashed during the two day edit-a-thon, but cleaning is no fun and blogging is a good way to procrastinate. The only complication, the toddler is having one of those 'mommy, hold me' days so we'll see how long I get to type.

1. I went in early and did the am cortisol draw. Although I think the standing order the endo put in was something more elaborate because I had the fancy test tube on ice blood draw for ACTH.

I will be shocked if it comes back low as I felt pretty awake compared to the previous two days though, I was comatose (just could not wake up and spent most of my time trying to finagle a way to lay down).

2. I was offered the option to go back on steroids after reporting that I exercised for two days in a row and then was laid low for two days as a result. (It's not just fatigue, it's heaviness in my limbs, like they are physically heavier than usual and I just don't have the muscle strength to move them.)

I said HELL NO. I did appreciate the offer and was really surprised at the idea that anyone gave two shakes about how I felt. But good Lord, to go backwards? No no no no no no nooooooooooo.

My take is that I must have some HPA axis functionality to even stop the steroids and it's do or die time. Either it works and I recover, or it tanks and the conversation changes, focusing on the lack of recovery. However, two days where just getting out of bed was an achievement is not tanking. It's not bad enough for me to go back on steroids.

(Okay, it may be that my sense of normal is messed up at this point, but I'm just not going to updose every time I feel tired.)

For all I know this is just part of the adjustment to the change in dose. It may pass, right?

3.We talked a bit about preventing suppression. A note was sent to pulmonology but I have no idea what it said. Probably something like 'this patient would not shut up until I sent a note, so act like I wrote something important when you see her.'

I told the endo my big fear is that I'm eventually going to end up intubated or in another situation where I can't speak for myself, it's just a matter of time. I don't want people thinking they can do whatever with steroids. They told me not to worry, I would be on steroids as long as I was intubated.

To which I replied, "Never underestimate the ability of someone to cut off steroids cold turkey."

One pulmo wanted to cut me off at 20mg last year. When I challenged that, I got 10mg, which was still too high. I have yet to meet a pulmo who seems to be cognizant of what a proper steroid taper should be. I have further refined my knowledge over the last year and now I know, but I am not always in a position to properly advocate for myself.

There needs to be a neon flashing sign in my electronic chart. "Patient has HPA axis of a gnat."

4. Another ACTH challenge is scheduled for July. Another shocker. I expected to be dismissed into the sunset, but instead I received thoughtful and conscientious medical care. I don't know what changed. Maybe I've proven I'm not a jerk or they've found this blog (in which case Hi!).

Between now and the test, my goal is to start exercising and pushing myself toward a normal schedule so that if I can't hack it, it will show up on the test. The only thing is, I'm still dragging a bit and would really rather sleep. Squats just don't hold any appeal right now for some reason.

One issue with the ACTH challenge, it is not diagnostic of Secondary Adrenal Insufficiency (SAI) from what I know. SAI can yield a normal ACTH challenge, yet the patient can still be insufficient. The ITT (Insulin Tolerance Test) is what diagnoses SAI so the testing may be of limited utility.

I highly doubt I'm dealing with Primary Adrenal Insufficiency. It would have to be SAI because I do have some functionality, just, possibly, not enough to allow me to do much.

My sincere hope is that I've achieved a baseline functionality that allows me to be off steroids, but that there's just a gap still between day-to-day production and ramping up to accommodate normal activities.

I don't think the endo sees it that way, which is fine, but I had hoped they would say 'Yes, that could be it exactly.' That didn't happen, but I'd like to hold on to my fantasy, okay? It has a happy ending and everything.

News,News, News

1. Completely unrelated to anything health related (unless you count a kinked up neck) but I sent a query to a publisher just because I felt like it. Not because I was serious or anything as I'm still pretty interested in self-publishing.

They said their response time was 4-6 weeks. It was actually 24 hours. I went from thinking 'oh good, I'll have a deadline and some time to tweak' to flat out editing for my life.

I think my fingers are frozen into claws. Here's a picture of the frenzy. All the paper is from line edits from a critique partner that I hauled ass to incorporate. It was more efficient to just toss each page to the floor once I was done with it. (Don't worry, the toddler has already scolded me for making a mess.)

I fully expect them to pass on the story, but it's exciting while it's lasts.

I'm not being unduly pessimistic, it's one thing to have the ability to write, another to write marketable fiction. I can write. Whether it's marketable is an entirely different skill set.

Best to keep expectations low.

2.Toddler's EI meeting was today and she got labeled.

Developmental delay.

I am so happy to see her getting some help so she can move forward, but wow, what a slap-in-the-face the DD label was.

3.Saw the endo, but will do a separate post on that appointment later. All I'll say is, I was surprised.

4. My temp went up to 98.7 and I felt pretty good today. I know the temperature doesn't really mean anything much, but I'm intrigued by the concept that molecules move faster with heat (think boiling water vs. room temperature water). When I think about it that way, it makes sense.