If My Liver Is Up, I'm Up

I'm having issues replying to comments. I've been responding and then nothing shows up. This extends across the Blogger platform as well. I think I know why this is happening, but the fix doesn't reside with me and I doubt it will resolve any time soon.

So.

1. A. P. Jonas...so sorry to hear about your mother. Thanks for all your comments.

2. Anonymous who asked about the vitamins...this is the company I use: https://www.consumerlab.com/

***

It's 4:30 am and I can't sleep. My liver is unhappy.

Thanksgiving went well. I ate more than I thought I would, which was exciting. Of course, my liver didn't like that. There's quite a bit of negative feedback from my liver over what and/or how much I eat--I can't quite make the distinction right now.

Is it the fat or the carbs or the volume or ??? Either way, I'm now back to fasting most of the day and struggling with pain that is worse at night.

The bummer is, I didn't even eat that much! I had hoped I balanced it all, but nope.

The one night, I had intense pain around the bleeding adenoma and wondered if I would end up in the ER again. Fortunately, it calmed down and went from increasingly acute to the more typical dull throb.

I increased my exercise, walking and dancing/doing aerobics for more than an hour for several days around the holiday, but it didn't seem to help.

I've also been running stairs, trying to increase my fitness level. To be clear, it's not a lot of stairs, I don't seem to be making many fitness gains over here, but I'm certainly challenging my heart and lungs which is the goal.

Some days, I can haul ass on the exercise front. Other days, I feel like I'm trying to go upstream against the battering ram of Niagara Falls.

Aside from exercise, I've been trying to get food lined up for the recovery period. There's chicken soup already in the freezer. Plus, I've been making almond flax cranberry pumpkin bread. If that doesn't make me poop after surgery, I don't know what will. Lol.

I'm also juicing as often as I can, trying to increase nutrients.

I'm worrying about the adrenal adenoma as well. I'm told the adenomas are almost like plugs. They actually insert into and stretch the liver. They are having a marked impact on how I feel as a result. My liver has to work around all 30 or so adenomas. I imagine this is why eating has such a negative feedback loop. Capacity is quite limited and I exceed it at my own risk.

So, extrapolating that information, what's the adenoma doing to my adrenal gland? Is it an invasive plug as well? How does it impact the function of the adrenal gland?

Why doesn't anyone think about that?

I don't believe I've had one blood test that would reveal an issue. No one has looked at my cortisol or anything else adrenal.

Although, if my liver blood work is normal, the adrenal stuff might be as well. My body specializes in that kind of confusion. However, I feel so much strain in my liver that I can prove it's quite possible to test as normal and still have something terribly wrong.

And yet they don't want to stress dose me. SMH. I'm not that brave. This is something I'm going to be bleating about pre-op, which I'm sure will make everyone so happy, but if I don't say it, no one else will. I don't think it's a bad question either. Especially as I have some discomfort in the vicinity of the adrenal gland.

Lastly, the hospital sent me educational videos to watch. One of which was basically, '11 Ways You'll Die from Anesthesia'. Sheesh. I've never had such a dire spin on the risks of surgery. Just what I needed in my head space. Thanks so much.

No wonder I can't sleep!

Yay Delay

My surgery was postponed, and I'm pathetically excited about being able to take my vitamins and any medication I want.

The second I had to stop the different pills I take, I was attacked by allergies. Great. Just when I needed some Claritin D (just Claritin doesn't work for me) I couldn't take it.

So I can finally get relief from the horrible sneezing, itching and congestion. OMG. Yassss. There IS a God and she doesn't want my head to fly off from sneezing.

And vitamins make a big difference for me. So I can tell when I'm not taking them.

(I always research the vitamins I take. Including a paid subscription to a service that does purity testing and keeps tabs on medical studies and information about different supplements. I check drug interactions as well. Because yes, I am that weird. Although I like to think of it as being responsible and not stupid. Tomato, tomahto.)

So yay delay.

Data Dump

I slept in my own bed last night! I'm giddy with delight!

I still have some discomfort, but not enough to force me onto the couch. I can even lay on my right side...for a little bit at least.

I'm having flashbacks to the ERCP where I finally started feeling better and we fucked it all up with the ERCP.

Am I going to make things worse with surgery?

Yes. Probably. That's what my gut thinks. Ugh.

***

(By the way, if you notice any missing gs, it's my keyboard. I'm not anti-g. The key doesn't work consistently and I don't always catch it. It's a new netbook, too. Naturally.)

***

I saw the specialist about my bladder and was thrilled to learn that the incontinence is fixable. I had NO idea and I never pursued it because all I knew about incontinence came from those lawsuit commercials about mesh.

But I'm learning now! And I'm excited. I've been just living with it.

At this rate, there will be nothing I haven't personally experienced. I figure I have to be at least a quarter of the way through the different medical specialties.

***

I'm still not eating a lot. My appetite is gone. I don't feel hunger normally. I can only tell I'm hungry from the headache and increasing fatigue. I don't get hunger pains.

I go a few days without eating much and then have a day or two of bigger meals.

Despite not eating, my weight hasn't budged. I'm pretty sure my body is violating the laws of thermodynamics now.

My whole system is off. It's gone dark and deadly quiet. Things are not normal.

My lower abdomen hurts when I hit a pothole which is atypical. I'm a little concerned about diverticulitis starting up. It hurts enough to force an involuntary yip out of me.

I'm keeping a wary, squinty eye on it. Nothing else I can do.

***

All the doctors have been amazing. I'm finally looped into a good network of people. Plus, having a concrete, unusual sort of 'novelty' medical problem makes it easier vs. being the vague symptom patient they can't connect with or justify doing anything for.

The only worry I have is the surgeon.

Ahhhh. So nervous about this surgery.

Did I tell you, they didn't want to stress dose me? Ahhhh. So much anxiety over that. I've only had problems with surgery when they didn't stress dose me.

Remember that? It's somewhere here on this blog.

RECAP

Endocrinologist:  'Your ACTH challenge was fiiiine. You don't need to stress dose.'

ER Doctor 8 hours after I was discharged from outpatient surgery: 'We think you're having an adrenal crisis and need steroids.'

Me: 'No shit Sherlock.'

/END RECAP

However, the pre-surg nurse told me the anesthesiologist makes that decision, and since I've been on steroids recently, they will most likely stress dose me.

Not to mention my asthma is flared a bit from the bug I caught in October, and it's persisted. If they don't stress dose me, the background asthma I have now is probably going to flare bigger with anesthesia and they'll have to do something anyway.

Also, I think the upper, tippy top reaches of my system are still not quite right. Those of you who think patients are loons who shouldn't be trusted with spoons are going to roll your eyes at this, but I had a weird episode this past summer.

We went on vacation and I wilted like a flower hit by a super nuke. Just unable to function. Couldn't stay awake even.

Yes, we were in a major city with 90+ degree hit and walking ten+ miles a day. But I'd slept well. Ate well. Hydrated with clear pee. No signs of heat exhaustion or anything. While my feet hurt, my body wasn't sore otherwise. I was conditioned enough for the activity level.

And on day 2, we did a low key air conditioned boat tour, but I was still falling apart, even though I was absolutely fascinated by the tour. The fatigue was clobbering me like Negan's baseball bat.

I couldn't even keep my eyes open. I kept catching myself falling asleep. This was not an 'oh I feel tired' Victorian hysteric kind of a thing, I was literally fighting to stay awake which is NOT normal for me.

I did my usual tricks of salt, sugar, water aaaaand nothing.

The boat tour ended and I tried a big meal. Maybe I needed more calories--my body always seems to be unable to find the fat it has stored and liquidate it. Instead of perking up with food, I put my head down on the table, desperate to sleep.

On a highly anticipated family trip.

After 8 hours of sleep.

And food.

And not even walking in the heat that day.

That is NOT me.

It felt really adrenal. The will was there, but there was no energy to support it. I couldn't GO.

It got to the point where I told my family to go on without me. I would just sit in the food court and wait for them.

I just couldn't get to okay. No matter what I did.

Somehow I muddled through, and the next day, I tried 10mg of prednisone. The asthma was pissy from everyone smoking outside and the smoke exposure was continuous, so I thought it wasn't the worst idea to head that off a bit. And if this was adrenal, it would fix it.

Which it did. I was suddenly perfectly normal. I had no problem keeping up. I had all the GO I needed and my lungs calmed down.

I mean, I don't know. It was weird though, and it makes me wonder about how well the HPA Axis is doing.

And if someone is against stress dosing, it just makes me very nervous.

I suppose you could make the argument that the drag on my system was the asthma, but it wasn't badly flared yet. I was more trying to head it off and keep it from getting worse. I figured, if it was cranky after one day in the city, that days 2, 3 and 4 were just going to compound things.

I don't know. I don't even know if an ACTH challenge would show anything. I do know I do great with stress dosing and always heal well. I know I don't do well without it. That's all I can tell you.

You either think the patient's voice matters or you don't.

Cramming

I have a surgery date and I'm trying to get all my loose ends neatly tied. By which I mean, I am paralyzed by anxiety.

It's not even an overt anxiety, just a low level, enough to keep me from being productive anxiety.

The kiddo and I got a hair cut. I managed to do that. Kiddo has hair that snarls like a pride of lions and it needed to go so there's no tween hair drama while I'm recovering. (We've had quite a bit of it recently.) Also, I heard my hair is going to fall out from surgery, so I thought going short would just make everything easier.

I am also waiting to hear what my latest TSH was because I got the classic 'you lost plugs of hair in the sink' from the hairdresser. (The blood work went in last week, but no results have hit my phone.)

I had a great appointment with a new PCP. My OB has been very helpful with referrals and getting me in with good people.

The adrenal adenoma has been hurting (I assume). I don't know why. But I have so many tumors that I can't get to them all. It'll have to behave itself and wait.

I did a half a day at the hospital doing all the pre-surgery stuff. Came home and konked after that. I don't know if that lack of energy is the liver or what. I'm over the fatigue though. It's atypical and frustrating for me to pass out like that.

I'm trying to wrap up a few classes I'm teaching, work, Christmas and everything else. It's a lot and I need to get it done fast. But mostly I just think about it and struggle to get to the doing part. Ugh.

Homeschooling is mostly squared away through March. I've set up a lot of a la carte online classes* so it doesn't depend much on me, and we've been so productive so far this year that we should be okay. My kiddo enjoys learning and usually has a good work ethic (I mean, she's a tween so...there are days. Oh honey, there are days for miles).

She should motor on while I'm passed out on the couch after surgery. If not, I imagine my ability to nag and take away privileges will recover within a few days.

I'm sure I'm missing something. Or many somethings. Ack. But I'm trying to go into this organized.

*If you were curious, because I know homeschooling is basically kid voodoo for a lot of people, her classes are...

1. A secular science history class that she loves. This will be her second quarter with this teacher (PhD in education) who has been fabulous.

2. A class with a former UN Human Rights lawyer discussing world leaders across history and evaluating their leadership. (I'm trying to find things where she has to formulate an opinion and support it. This seems perfect.)

3. A debate class with a teacher how has a Masters of Education. (We have been working hard on logic and this is the next step. Also: OMG I'm teaching my kid how to argue with me and win. Urp!)

4. A short genetics class about the blue people of Kentucky with yet another Masters of Education teacher. When I asked if she was interested in this one, she shrieked "OMG I love genetics, mommy." (The volume level was that of an overjoyed banshee. See also: Why I'm going deaf.) She discovered genetics at the Chicago Museum of Science and Industry on our vacation last summer. So point for offering a broad variety of experiences to kids so they can find their passions.

5. Math is mostly online with us checking her work and monitoring her progress.

6. Vocabulary workbook which I can review whenever.

7. ELA is mostly covered by 1, 2, 3 and 6, but she loves to read so there will be huge amounts reading. I stock her one shelf with an educational assortment on a wide variety of topics. This week she read TS Eliot poems and one of my corporate books on doing business in China, which cracks me up. I knew she'd like it lol. (We've previously done a novel study and fiction writing. More writing and novels studies will come later.)

7. Band class...assuming I can drive or find someone to take her.

8. She'll be wrapping up a months long theater workshop, again assuming I can get her there. Performance is in January.

If I can digress for a moment, more than I already have, I'm glad we chose a different path. I joined a bunch of teacher Facebook groups because I was told that would be a great way to find resources aaaaaand there are a hell of a lot of teachers milling around bleating 'tell me how to do this'.

It's been a bit disconcerting to see the mass helplessness. And then there are the teachers who have really punitive, easy to weaponize kids against kids discipline policies that are celebrated as 'fantastic' by most of the comments (not all, but most). And yes some teachers love their kids, which is great, I just wish they weren't quite so 'tell meeeee what doooo because I don't knoooooow.' It's been kind of WTF.

We still work with teachers as homeschoolers (as you can see above) but we find the ones who have their shit worked out and know what the hell they are doing.

A Patient's Barometer

If I can make you laugh, I know it's going to be okay. 

When you don't laugh, I know to be afraid.

Every time.

Where the Inhalers Hide

And she could not find ONE inhaler because they were having a secret union meeting on her dresser. LOL

Liver in Waiting

Just in a holding pattern over here. Was supposed to hear back from the surgeon and didn't. I'll call in a couple days if I still don't hear back.

I'm just so conflicted on surgery. Still.

There's a chance the tumors will go away once the hormones feeding it go away. My big bleeder might go *poof*.

Then again, it's been the pea to my princess this whole time. I finally saw the MRI and know where it is now and it corresponds to one of the spots that bothers me when I lay down. I doubt shrinking is going to make a huge difference.

Aaaaand there's a risk the tumors will grow and push me into a liver transplant. Hopefully a low risk, but I didn't work global haz mat shipping for 10 years to ignore the worst case scenario. (Before that I worked with medical equipment, which is equally demanding of perfection. I've had to be anal, is what I'm saying. It was necessary to keep your plane from blowing up and to keep patients breathing. There's a downside to that. Here it is.)

Adenomatosis can go either way. Shrink or grow, but there's no way to know which one will prevail. (To clarify, the medical literature pretty much assumes everything shrinks, but once you're connecting with patients, you find the cases where they grew instead.)

If I have surgery now while it's small...no risk of liver failure. If it grows, surgery to remove a bigger tumor has a 10% risk of liver failure.

You can only live about 2 days with a 'dead' liver.

(For the person googling adenomatosis and hyperventilating after reading all that, lots of women do fine and the tumors shrink as expected. My risk is not your risk. I'm a little more fucked up I think, on many levels. Breathe and go find the less cranky adenomatosis patients. I'm the blog for pissed off bitches. No happy shiny here.)

Even more 'fun,' the idea now is to do everything in one surgery. That just makes me cringe and want to pull the covers over my head. Intellectually, I get it, but viscerally my innards are whimpering in horror.

Talk about butchery!

And the risk of complications must be a bitch when you're cutting out whole organs, pieces of other organs and trying to patch up yet another organ at the same time.

Also, I'm such a stable genius I read a book by a liver transplant surgeon. Oh boy. That gave me soooooo so so soooooo many visuals that do not help.

I think I'm a little squeamish about surgery.

Huh.

Well.

When I'm not freaking about surgery, I am working on losing weight. I've given up on diet and exercise, though. I'm going straight for starvation. I'm calling it medically necessary anorexia.

(By the way, anyone who judges or scolds me, gets to have a liver resection. Chill.)

Why starvation? Partly because my liver still can't handle three squares a day, partly because I just can't be bothered with a strict meal plan, and partly because PCOS just makes losing weight way too hard. It's easier to just not eat.

So I don't eat until around 11-12 and then it's just a Greek yogurt or walnuts and some dried cherries (because I hate walnuts, but they are medicinal for me, and the cherries mask the walnuts).

Then whatever dinner, which might be super healthy or super stupid. Tonight I had homemade spinach artichoke dip and chips for dinner. Followed by ice cream I couldn't finish.

Probably the most calories I've had in a week. So there is stupid food and calories, but other days it's a yogurt and a bowl of chicken carrot soup (no pasta or rice) followed by apple slices and peanut butter for dessert.

Aside from hunger, this is the easiest 'diet' I've ever been on. (Adrenal insufficiency is better yet because there's no hunger, but that's not a diet.)

So just over here, starving, reading all the wrong things, and waiting to hear about my treasonous 'lesionous' liver.

Babbler

I've finally become aware that I talk too much when I'm nervous/anxious or in extreme pain.

Oh. I'm so embarrassed.

This last ER visit, the pain was so extreme, I couldn't shut up. I think I told everyone my bank password and social security number and god knows what else. Probably my sexual history or something equally embarassing.

The pain was just so bad, morphine was pointless (or the dose was too low, I don't know) and talking helped distract me so words just poured out. That was the first time it happened due to pain. Mostly I'm fairly stoic, but lately my body has found ways to break me.

I haven't been in that kind of pain before (although I still maintain a broken elbow is worse. At least with my GI stuff, if I just don't move, I can find a pain equilibrium. I didn't babble with the elbow, but I did scream through the xrays. That was embarrassing too. Sigh.).

And I'm a story teller who likes to follow an interesting thought and enjoys funky word choices. Add in anxiety...

Oh. It's terrible.

So that's how I was with the liver surgeon, a terrified babbler. It did not go over well. I finally hit the wall on my lucky streak full of great doctors.

I don't want to have surgery. I really don't. I can't do nothing either, though.

All my choices suck. I don't want any of them.

You go have liver surgery. How about that? You do it. Let me know how it goes.

Adenomatosis: A Work In Progress

I heard back from the tumor board. They want to take the biggest tumor out. I'm not sure why.

1. This hepatic adenoma is less than 5cm. The rule-of-thumb is under 5cm and no one cares. Granted, that's for when they aren't bleeding. I do get that my situation might be different.

2. I was told the adenoma with internal hemorrhage would eventually heal on its own.

So I'm a little confused.

We meet with the surgeon next and I hope to learn more.

Meanwhile, I'm continuing to network with other patients and wow, there is a lot of bad medical care out there for this. Wow. Wow. Wow.

Right now, I'm lucky. It's obvious the hepatologist knows what they are doing. I'm sad/mad to see so many women who don't have that.

Women with active pain that is likely a sign of tumor growth/change are blown off over and over again.

Women who are told there is no way they can have pain.

(YES YOU CAN HAVE PAIN. Just talk to as many patients as I have. At this point, I have met more patients with adenomas and adenomatosis than most doctors will ever see in their practices. ADENOMAS HURT. Yes, we know there are no nerves in the liver. Medicine is missing something. New/changing pain is a message from the liver...LISTEN.)

Women with small tumors who are dismissed and ignored despite symptoms.

Women who are told hormones are okay if it's an IUD. (NOPE. Not okay.)

Women who aren't getting the right imaging and are given 'busy work' of useless ultrasounds.

(Small adenomas need MRIs, guys. CTs might pick up something, but my ER CT either missed or couldn't see the hemorrhage in mine...I needed the MRI and thank God I pushed and got one within 10 days of my ER visit or they might have never discovered what was going on).

Misogyny in medicine is one thing. Medical misogyny and rare disease shit is a worse thing.

So I was thinking, how do I know a doctor is good?

1. In this case, the hepatologist knew exactly what I had. Their care plan aligned with the medical literature without being rigid about it. What do I mean by rigid? Some doctors take the medical literature on adenomas as a series of inviolate laws and ignore their patient's experience.

 "Your tumors are small, they can't cause problems unless they are bigger than 5cm." Doctors actually say this to women. It's not true, but medical care isn't always about logic and data. Science is often subverted by bias and knowledge gaps and ego.

2. A good doctor listens and allows me to speak.

3. They're organized. They follow up. What they say is what they do.

4. They don't diagnose before the test results are in. The bogus IBS diagnosis I kept getting was always dumped on me within the first five minutes of a first time visit with a physician.

5. They actually order tests. Real tests, not busy work, 'shut the patient up' tests.

6. When the tests don't show anything, they have enough experience to understand that doesn't mean there isn't an issue. They may not be able to do a lot without objective evidence, but just following a patient and not blowing them off is invaluable.

(It was ME who gave up on my mysterious GI stuff, not my original GI. The tests never showed anything and the GI didn't have any other ideas and I don't like going to the doctor all the time, so I checked out. We'd hit a stalemate.)

When these six things aren't happening, I get antsy. Depending on how bad it is, I may stick around for a bit, but I don't hesitate to walk away if necessary.

That's the lesson I keep learning over and over again. You have to keep going until you find someone decent. Don't settle.

And my final thought for this post, is this...

Do I have something else going on? I see an awful lot of specialists from someone in their 40s. And I started piling them on in my 30s!  I'm starting to wonder if I'm going to have a specialist in every specialty! Just for this GI stuff, I'm going to have at least 3 different specialist for different things. That's weird, I think. It shouldn't be like that.

There are some other causes of adenomatosis. Is there a unifying thread that ties this all together? Will we actually find it?

Who knows! It's all a work in progress.

Snags and Snot and Other Ventures

I didn't make the tumor board after all. A clerical error somewhere left me off the list. Maybe next week.

Bah.

I'm working on a sinus infection I think. Or something. This cold I picked up from going to the doctor all the damned time is not really going away, it's just morphing into something else.

On the upside, I took the first fledgling steps to start a new business venture. Writing fiction requires very high output to sustain any income and I'm kind of sucking at writing fast. Ergo, I'm hoping to develop this new venture as a way to stabilize income and set up something that can motor on without daily input from me.

So that was exciting.

And I got a nice message from a reader saying they loved my last book. That's where the smile on my face came from today. :)