Pale and Waiting

Had pale yellow, clay-like stool.

Called surgeon and asked 'is this a thing that matters?'

They ordered STAT blood work.

But then weekend started so nothing will be done.

I did finally realize I had access to a bunch of lab results in the online portal. I reviewed them all aaaaaand...I'm anemic.

8.0 hemoglobin
22% hematocrit

So that explains why I've been panting like a fucking dog for the last 15 days.

I didn't think I'd bled enough to be anemic. They touted how little bleeding I'd had, so I didn't even think about anemia (although I should've known better, especially with this surgical team).

At least I anticipated this a bit and had stocked up on the iron supplements I like.

I've started slamming back iron like it's candy and am anxiously awaiting for the 5-7 day mark when it will finally start to have an impact.

Meanwhile, the 5 day steroid burst ended, buuuuuut the asthma flare didn't break. My lungs are stuck. I hope improvements in the anemia will correspond to improvements in the asthma, but we'll see.  I don't know what else to do. :(

Going Backwards

Lungs got worse. Developed a cough. Had a low grade fever here and there for a bit.

I fought back hard with the nebulizer and all my inhalers, but when the hubby lit some matches it was instant Game Over for me.

It was either steroids or the ER where they would go 'huh, what do you mean you're not supposed to take steroids?' I did not have the breath to deal with that.

So here I am on a 5 day burst.

Good thing I did it, as after the matches, I got hit with diesel fumes from the tree trimming crew. (We have a massive, ancient oak tree that needed pruning...at exactly the wrong time for my lungs).

I called the pulmo, who as per usual, has no time to see me, but did eventually relay that they didn't want me on steroids either due to their impact on wound healing.

But then had nothing to offer to help.

I've done what research I can. My sense is steroids can end well, they don't always fubar wounds up. I'm navigating my risks as best I can with a surgeon who does not give one shit and a pulmo who can never absorb emergencies and any ER visits would be a hot mess of WTF.

The scary part is tomorrow is day 5, but my lungs are still crap so...then what?

In Which I Try to Explain Asthma to Liver Surgeons

I've had something like 12+ doctors appointments since landing in the ER this past October. Each time, I disclosed my medications and health history.

Same for the presurgical consult.

I thought when I said things like, "I have asthma. I'm on Symbicort daily and pulmicort, pro air, albuterol solution and prednisone as needed' that they understood I had asthma.

Not Kim Kardashian asthma that expresses as a cute little cough and comes with a custom inhaler cover to match your purse and shoes.

No, I don't have that asthma. I have jihadist, kamikaze asthma that has declared me an enemy who must die.

My asthma, when activated, does not play.

The blessing and the curse is that moooost of the time, the asthma is controlled. So everyone gets complacent and tends to dismiss my intense interest in staying on top of it.  (Except my pulmo because she's seen it in action.)

But you don't get a never ending prescription for prednisone 5 day bursts because you can breathe just fine, you know?

So after the liver resection, my lung partially collapsed and the asthma came out to play and I didn't see good O2 sats for days. Unfortunately, no one really noticed. On Day 2 I woke up enough to go 'gee, I'm undermedicated for this' and started demanding meds in an effort to find relief.

(They were treating me with oxygen and one puff of Advair and nothing else.)

The 'we are bros, bro' residents told me they were going to discharge me with shit breathing and that I couldn't take any steroids for my lungs.

And I freaked.

Seriously? You are going to discharge me with O2 in the 80s and tell me I can't use my 'asthma action plan'?

What?

I kept asking them about it. Trying to get them to make the connection that maaaaaybe it's not the smartest thing to ditch a patient at home when they aren't breathing so great. Maaaaybe the bro code could include figuring something out so I don't bounce right back into the hospital.

However, I was in a lot of pain, my O2 was not great and talking was very difficult. Meaning, my ability to express myself was not at 100%. I don't think I was very effective and the bro residents really were not interested.

FINALLY, my family got one of the halfway decent residents in my room and I tried to explain again.

"If I can't breathe now, what do I do if it gets worse when I go home?"

They had no answer. I brought up prednisone.

"No. No. No prednisone. We're not giving you any steroids."

"I don't need you to give me steroids. I have prednisone at home."

You should have seen the look on the resident's face. Like, he was shocked. Utterly shocked to learn I had steroids to use at my discretion.

Somehow that translated. The light bulb went off. "Ooooh you have asthma." I don't get why this was such a shock to any of them, but there it is.

I then pushed for a pulmo consult, which was too late in the game to help me much. I'd already gotten the meds they could have prescribed and lined up the RTs for nebulizer treatments.

I resent that I had to work that hard on my care. I was exhausted, in pain, and struggling to breathe, and I had to argue and argue and OMG argue for care. I can't believe they didn't pull in pulmo when the lung collapsed, but apparently that is just not done. It was very disappointing.

Ultimately, nothing was settled. I was sent home with no plan for my breathing and was left to manage it on my own. I don't know why a surgeon would bother to cut a patient if they weren't going to ensure something else didn't ruin their work down the line, but here we are.

Liver Resection Recovery 10 Days Out

1. Finally off narcotic pain meds and on Advil. I have pain but it's below a 5. When they sent me home I was still at an 8/9. My abdominal wall does not like to be cut. For some reason, the pain is always excruciating for me.

2.  I can poop! Woo! I took the Colace they prescribed, and as time went on (and on) I added in magnesium and then Senekot.

3. Lungs still dodgy. Since yesterday, I can't take deep breaths. I feel like I'm 'pinned down' on the right side. Asthma is mildly flared. I keep yawning and am still short of breath on activity and with talking.

4. Walked 22 minutes yesterday. A little over a mile. Am doing some stairs as well. With the lungs, I kind of walk a bit like the Hunchback of Notre Dame. Shoulders up to my ears and bent over. Sometimes I have to stop and put my hands on my knees to release the pressure on my lungs and abdomen and just catch my breath. Working on building up from here.

5. I can finally eat! But not a lot. I still have 29 other tumors, 28 of which are in my liver and they are not totally inert. My liver definitely has a hard line when it comes to food. So I'm still dancing around that.

6.  I have a divot on my back that is somehow related to all this. I don't know how though. It hurts and throbs and sometimes itches. I started with ice packs and have switched to hot packs trying to help it heal.

7.I am so sick of sleeping on the couch. Ugh. But our 80lb rescue dog--who is still fairly new to our family--doesn't understand he can't walk on my stomach. For the time being, I have to stay quarantined from his rather aggressive love bug tendencies. He snuggles like an anvil on the head!

The Other Side

It's 2:51 am and I've just finished plucking my eyebrows. The things you do to distract yourself from pain.

Now I'm here typing, because I can't stand any more.

I had the liver resection surgery. It was a clusterfuck. My asthma did not behave, my lung partially collapsed and my body tried hard to never breathe again after anesthesia. It's been very painful...I continue to find opiates largely ineffective and doses were limited due to the 'bad reaction to anesthesia'. 

If I'd known how painful and how little anyone would care about the pain, I'm not sure I would have done it.

I had an incompetent resident, who forgot to BE a doctor and instead became upset and increasingly unprofessional in both technique and behavior. That genius trashed my hand and caused me to injure my abdominal wall in a near fall.

Other residents...I don't know quite how to describe it...kind of like they lost any reverence for what they do. I found them disrespectful, not to me per se, more to the heart and soul of medicine.  Like, are you here to be a cool 'bro or serve the greater good? A small herd of them showed up every day. There was a lot of ego posturing at the foot of my bed. It was weird and juvenile. They needed more supervision.

And yet other residents were fine. Unfortunately, I didn't get them very often.

Group think tried to ignore the asthma and tell me I had sleep apnea. Even though my O2 would drop to 80 during the day while I was awake. I had to fight like hell to get the asthma taken care of. I don't even know why. It's not rocket science.

As I became more with it, I demanded more meds and got pulmo involved...too late though to really help. However, pulmo and I were on the same page. I wasn't crazy, but after days of being left to fight for every breath, I was starting to think I was.

I haven't eaten for 7 days. I can't eat. I try and my body very clearly says NO. I feed a lot of people my Jello. lol Two bites and, "Here, you eat it. I'm done."  

But I'm hungry. I spend a lot of time noticing all the random food that pops up around me. I've watched every recipe that has come across my Facebook feed with an intensity normally only seen in dogs. 

I'm up most nights due to the pain. I just stare at the ceiling, breathe around the pain as best I can, and try to let the drone of the TV lull me to sleep, but it's a long slow process. Sometimes I don't have the patience for it.

At the moment, I've realized the nurse didn't remove the stitches for my arterial line (what is that? A Pic? A central line? I'm not sure of the term). Mostly the nurses were fantastic. One even gave me a big (and gentle!) hug and then came to say hi when she was on the floor but assigned elsewhere.

The reality was, I was in so much pain and struggling so hard to breathe, I was not a high maintenance patient. I chased sleep constantly, hoping to sleep my way through the worst of it and save up some energy to deal with the sleep apnea cult of bullshit.

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. :)

Adenomas All Night Long

Up late, thoughts all over the place. I am back to sleeping upright on the couch as my liver does better when I do that. However, it does tend to lead to late nights where I'm far too alone with my thoughts.

1.Tonight I've been googling my diagnosis. Which I can barely spell or say.

Hepatic Adenomatosis.

Ha. Spell check has never heard of it either. lol

This is likely caused by my personal mix of abnormal hormone fuckery, oral contraceptives, and long term high dose prednisone. Remember, before all the asthma inhalers came on the market, I was on prednisone almost continuously for 15 years.

2. My care team is coming together. My OB, bless her, gives a shit and is saving my ass almost single-handedly. She has hooked me up with the hepatologist who has seen this before. Another specialist because we're going to do a 2 for 1 surgery to put me into menopause and take care of childbirth related incontinence at the same time. And a new primary care doc.

I am told if we can't get these things to stop growing, I will need a transplant. I have too many adenomas to be a candidate for a liver resection.

(Although as I read more and more medical literature, I am hoping that we can get by with spot treating the troublesome ones. Odds are all 30+ of the tumors won't keep growing. Some could grow. Some will likely disappear...I hope. Others will remain inert...I hope. 

My liver is, thank god, holding up.  All normal blood work.

Thank god I never drank and never smoked and while PCOS makes weight an issue, I do not have the worst food habits of the average american. When this all started, I ate like a freaking genius. All veg and protein. It's this GI stuff that has degraded my diet over time. My stomach hurts constantly and my system struggles with complex food that needs a lot of work to digest.)

4. My case went before the tumor board. We're all waiting to hear back on that and then we can start scheduling surgeries. I'm guessing things won't come together until January, although I also guess I'll have a biopsy or some kind of liver focused procedure before then.

The largest tumor is bleeding inside itself. I'm learning from other patients that it's an indication of rapid growth. I'm wondering if they're going to want to do something about that. Also, they can't rule out cancer from the MRI and a biopsy was recommended by radiology.

5. I've had 10 medical appointments/er visits/lab tests in October. 2 of the doctors I saw met the legal standard of malpractice (Hi. I have a lawyer in my family. I ask them things.). At least I knew enough to keep pushing. That saved me a lot of grief and kept them out of court.

Most doctors will never see a case like mine. It shows. Badly.

6. Being sick is a job. It's driving me out of business. All I do is go to the doctor, make phone calls for the next doctors I need to see, or order copies of records. In between I take care of my family. I don't have time or energy for work after that. I'm closing up shop and taking a medical leave for the next several months to focus on my health and my family and screw everything else.

If things don't go well, this is the beginning of The End. I highly doubt they'd accept a fat, prediabetic with pro heart attack PCOS and bad asthma as a transplant candidate. I'm not even sure I could feel okay accepting a liver. Something else would fall apart. I'm full of gremlins that way.

7. The toxic people in my family have been toxic. Quelle surprise. I had to cut one relative off because they wanted my tumors to be their trauma and were willing to be quite nasty to claim that for themselves.

I mean, I'd happily put all these tumors on their liver and adrenal gland, if that was possible. Far be it from me to stand between someone an their megalomaniac martyr complex. However, a tumor transfer is a no go, and I need to keep my headspace focused on what's going to get me through this, not let their damage side track me. A couple other relatives aren't speaking to me because of that. Fuck 'em all.

It's also amazing the number of people who can't manage a simple 'I'm sorry to hear that.' Of all the people I've supported, financially and otherwise, when they or their loved one was sick...exactly one even bothered to contact me.

And a woman I barely know from church sent me a very sweet card.

I haven't been surprised exactly. I know it goes down like this, I just didn't think it would be this bad.

8. I swear, if the letters I B S fall from another doctor's lips, my head is going to explode. It wasn't IBS you jackasses. If you'd really listened and really looked at the clinical evidence, my body was telling you about the adenomas even if they weren't visible on CT scan yet.

It was all there. You just had to pay attention. Chronic right upper quadrant pain, normal blood work, no gall stones. No improvement with removal of the gallbladder. That's a pattern anyone can see. Order the MRI when it shows up. Especially if the patient has an endocrine disorder and is on long term steroids or bcps.

My GI knew something was off, she just didn't know what it was, but she never once said IBS. What she said was 'You need to be at a larger care center. We don't have the capabilities you need.'

And all I got from the larger care center that you have heard of was...IBS.

Bah.

My hope is to send my GI a letter once some of the final diagnostic stuff is sorted out just to let her know what it turned out to be. My sense is she'd like to know.

9.For the record, I did ask for a hysterectomy several years before any of the adenomas started. I have always known my hormones needed to go. I live in this body, I can feel the dysfunction in a visceral way that most doctors (unless they also have PCOS and HPA axis suppression) will never experience. I understand that's not how medicine works, but it's how patients work and the patient keeps getting left out.

IBS Is BS

Hubby: Why do they say you have IBS? You have all these lesions and cysts all up high where your pain is.

Me: (laughing) Oh honey, I'm a woman. Women aren't allowed to exist for a GI doc unless they have IBS. You think *male relative with lots of GI stuff that could easily be pegged as IBS at the same hospital*  is ever told he has IBS?

Hubby: No.

Me: Correct! You've earned your gender bias identification badge! Of course HE doesn't have IBS but us wimmin folk, we're nothing without it. IBS is how I know I exist as a woman.

Midnight Mumblings

Spent a half day at the big medical mecca. Saw a hepatologist. Got stuck over and over for blood work. Trying to find a way up.

Naturally, there's no way these growths could be the source of pain or a reason to go to the ER.

I mean, this only happens to like, .004% of women. And it's the only abnormal finding I have. And the pain is right over and around my fucking liver.

But let's not allow Occam's Razor get in the way of medicine's pathological need to deny all things all the time.

I had no idea you could cherry pick when Occam's Razor applies.

And of course, out of the other side of their mouth they're telling me that the tiny lesions are bursting and that's why I have pain.

PICK A LANE, PEOPLE!

Now I can't sleep. I'm exhausted, though. And frustrated and stressed and tired and my stomach hurts. I see some random OB/GYN today to discuss getting off birth control pills and the possibility of a hysterectomy.

I don't want a hysterectomy, but I think it's the right move. But I really don't want major surgery. I don't want to deal with doctors any more than I have to. Medicine is like a horrible ex I can't get away from.

And the OB/GYN is a man, which increases the odds of mansplaining and talking over me by about 1000%.

I will say, on the GI side, I'm seeing female doctors now and it's better. They still say all sorts of stupid, baseless shit just like their male counterparts, which I don't know why doctors think they can just blurt out any old diagnosis without doing the empirical leg work.You'd think that would come back to bite them often enough that they would stop. Apparently not. 

The big difference is female doctors actually order tests to actually find out things. Male doctors just talk over ya and boot ya to the curb. Exhibit A: The male GI who talked over me, said he would call and then ghosted like a bad Tinder date. Exhibit B: The female doctors ordering the tests. Exhibit C: The hepatologist said as much today lol.

Aside from OB/GYN, I'm waiting on a liver biopsy to be scheduled as well. My liver looked funky enough that the radiologist couldn't rule out cancer.

My blood work must've had some kind of asap rush on it because results started pinging my email within two hours. Thankfully, everything is mostly normal (for me).  Liver is working well despite all the growths and the NAFLD. Creatinine is a smidge abnormal, but I'm going to chalk that up to dehydration. By the time I did the blood work I hadn't eaten in 18 hours and had barely had any water.

And I do have some nominal wins to report. (I'll take what I can get right now.)

I'm not diabetic, which I always worry about because of PCOS and all those high dose steroids I took for asthma back in the day. Insulin resistant, yes. That shows in my A1C, but no type 2, not yet. Knock wood, not ever.

I'm not anemic. The stuff I do to keep my iron up is working. 

My cholesterol is as perfect as I can make it. I've had problems again with high triglycerides. Thanks to PCOS, they spike off and on. When I was younger I could manage the dyslipidemia with diet, but as I age, of course, that isn't enough.

Naturally, the statin the PCP gave me permanently damaged my feet.  I'm told they were supposed to tell me to take COQ10 with it, but that didn't happen and now the balls of my feet hurt all the time. It's been over a year and it's not getting better.

So I ditched the statin, didn't even make it two weeks, the pain in my feet was that bad. My PCP did not give one shit, didn't even suggest a different med or anything. I was left on my own to figure it out.  Which I did. And I brought my triglycerides down from 600 to normal.

It took a while and I have no idea how well it will maintain, but I did it. I used niacin, COQ10 and fish oil coupled with intermittent fasting and more consistent exercise, which let me be clear, I am not breaking any fitness records over here. At all. That is my constant struggle, to find energy and time for exercise.

And by time, I don't just mean I'm a busy working mom, I have to process through things like random broken elbows and surprise concussions and asthma and whatever is blowing up in my gut on a rotating basis.

Looping back to the hysterectomy for a moment. One concern I have is I'm going to get rid of all my hormones, not be able to use HRT and be miserable. The other concern, how the loss of hormones will affect my heart. The dyslipidemia can be pro heart attack and tough to beat back at times. I hate the idea that I might be making heart stuff more possible.

Or maybe I'm over thinking it.  I don't where up is at the moment. I haven't found my North Star for all of this yet.

Remarkable Me

It looks like no one is reading my new posts. It's sad in a way because blogs have largely dropped from search engine results. If you're not in a FB group or other community as a patient you are out of luck. All the connections are there. No more googling and finding first hand patient accounts.

Anyway, my MRI results came back.

I am probably a true medical zebra.  The kind of thing docs might never see in their careers. My MRI is probably going to end up in some powerpoint or slide share somewhere.

Basically my "remarkable" liver is riddled with growths. I have ~30+ adenomas on the liver. A bunch of cysts on the pancreas. An adenoma on an adrenal gland.

I don't know yet what's going to happen. I still need to see the hepatologist.

Get off bcp, obviously. Probably a biopsy. After that I don't know. Probably wait and see what happens to all my growths. If they go away, great. If not, I might have to have a chunk of liver removed.

I am wondering about a hysterectomy as well. Because with PCOS I need bcp, it's not a lifestyle choice. And if you take me off bcp, with PCOS I can still produce a shit ton of estrogen...which is what feeds these suckers. So what's left? Hysterectomy. Voodoo rituals...which don't even have a placebo effect.

The idea of a hysterectomy is kind of terrifying. Some women do great, some don't. Which camp do you think my odds favor? Do I feel lucky? Nope.

In the Middle of the Night

Can't sleep. Too uncomfortable. I'm doing my best to sleep upright as I've found that is the #1 thing that helps, but it's easier said then done. I bought a special wedge and it sucks. I've been trying different combinations of pillows and blankets and that sucks too.

I'm now on the couch. The couch tends to work, but makes the hubby sad. He misses me. I miss him and the dog--who snuggles so sweetly I can't hate her for being a ninja psycho who once broke my elbow.

I finally had a GI appointment with someone who did their job. They still breezed into the exam room convinced I had nothingburger IBS (I'm guessing with as often as IBS comes up for me that's all GIs ever say to patients, that diagnosis just seems to be a very popular dumping ground) but I wasn't eating still and had lost about 15 pounds so they couldn't write me off completely.

I had an MRCP which was interesting. The secretin reproduced all my symptoms buuuut I was told the pancreas looked fine.

HOWEVER, there is something going on with my liver. Which we kind of knew since the ER said I had a lesion on the liver.

Try lesions.

That *zebra alert* also happen to be rare. So they say.

I also have fatty liver. Here's that math: PCOS + 15 years high dose prednisone use = fatty liver starting around age ~29 in my case. (I didn't even party! I'm having all the downsides of booze without drinking any! And all the real alcoholics I know are fiiiiiine. Fuckers.)

Clearly there are happenings in my liver.

I'm now trying to get an appointment with a liver specialist. Even with a referral from the one GI, it's been the usual bureaucratic clusterfuck. I'll get the ombudsman involved if I need to.

Because I'm struggling to eat and sleep. The status quo is not sustainable. Not that it looks like GI has much to offer. I've been doing a lot of research on different GI things as a close relative has recently had a gas-tric cancer scare. I know more than I ever wanted to now.

I've come away from my deep dive into the medical science of guts with the impression that GI doesn't know much and can't do much either. The survival rates for gas-tric cancer are absymal...to the point where I thought to myself, as I read, 'chemo doesn't work for this at all' and whaddaya know? I then found a just published article where an oncologist said exactly that. Liver cancer survival rates aren't that great either.

Basically, if you can't avoid cancer, you want the thyroid one. That cancer has good survival stats. Keep your gut healthy. GI cancers are still in the Dark Ages.

And everything is IBS in the GI world. GI is like the Oprah of Guts. You have IBS! And you and you and you and you! Do you have a vagina? YOU HAVE IBS!

But...

I said, YOU HAVE IBS!

But...

HERE ARE SOME ANTI DEPRESSANTS THAT WILL KNOCK YOU OUT LIKE ROOFIES!

But...

GOODBYE!

The GI specialty has a whole alphabet of IBS 'types'. C, D, M...I forget the others. I think they proposed a new one recently. I keep saying they need to add an IBS-G for the gallbladder removal patients, because get this...when the loss of gallbladder screws up your innards and makes you dump bile, they've apparently decided that's IBS too. Even though it doesn't meet the diagnostic criteria for IBS (from what I can tell). There are dozens of IBS-G patients milling around in IBS FB groups going 'WTF, whhhhy am I here?'

If you spend any time with the patients, it's really obvious that there's more going on. My impression is that IBS is where they put you when they don't know what to do. At some point science is going to figure out some new diagnoses and realize they've given some patients a raw deal. At least that's how I see it.

I'm kind of fascinated by how social media has brought more and more patients together and almost nothing has changed in medicine. I'm not the only one who sees IBS this way. Other patients see it too and...nothing has changed. Critical mass doesn't matter in medicine. Not when it comes from patients.

Anyway, I don't expect much from GI, but I'm guessing my liver will need to be monitored. Maybe a biopsy or EUS. Depending on the type of lesion, this may have a hormonal component that will intersect with OB/GYN as well...not that anyone will know what to do because this is supposedly soooo rare. We'll see.

My goals right now are 1. Get that liver specialist appt. 2. Get into a new primary and get blood work. 3. Do a daily 20-24 hour broth fast as I do better when I don't eat and then eat one simple meal (which might just be yogurt at the rate things are going). I'm at that tricky stage where I'm better enough to be hungry, but not far enough along to actually eat anything. That is a special kind of misery, I tell ya.

If anyone remembers, the last time it was almost a year of this BS (literal and figurative lol) and then on and off again ever since my gallbladder surgery. I'm guessing it was my liver this whole time.

That's another thing I've noticed about GI stuff, patients have problems before there are clinical, objective signs of a problem. Chronic pancreatitis patients are parked on IBS for years until all the clinical criteria finally lines up and/or a doctor finally orders the tests.

I have the same BS from 5 years ago, but this time with liver lesions (and normal blood work, although I'm not sure all the liver things were checked, hence #2 above). Where were these lesions the last time? Who knows? Not the GIs.

Crap. I'm Back.

I tried to sail off into the sunset and have a happily ever after, but that is not how any of this works.

I have pancreatitis again.

And a lesion on my liver.

Amazingly, it's the usual struggle to get medical care.

I'm to the point where I fantasize about hiring a lawyer to sue hospitals into providing care.

Or making a protest sign and sitting outside the clinic. Hunger Strike for Care (it's not like I can eat anything, might as well make it work for me, right?).

Or just bringing my really cranky male relative who is prone to screaming until they get what they want to all my appointments. Because doctors jump for them when they do that, but me being socially appropriate gets me no medical care at all.

I don't get how this works.

Is it because I don't have a penis? Is that it? Men can't hear people with vaginas?

Oops. I forgot to have a penis. Sorry. My bad. You are absolutely right to ignore the lesion on my liver and the fact that I keep getting pancreatitis. Clearly this is all my fault and I should die.

Meanwhile, I can't eat. I struggle with sleep because I'm so uncomfortable. I've pulled 2 all nighters in the ER this past week and was borderline for admission due to a fever.  I opted to go home and pinned my hopes to a specialist appointment.

Oh fun! Yet another male doctor who talks over me, hasn't looked at my file, but says he'll call.

He didn't call.

So, like, whatever.  I'm doing everything I can. I set up an appointment with another specialist somewhere else. Maybe my vagina won't instantly strike them deaf and dumb.

***

I still have asthma. I broke my elbow (or I should say the dog broke my elbow) a while back (very painful, worse than pancreatitis which is saying something). And I got hit in the head with a heavy ball at a park and had a concussion.

So even if I'm not posting, don't worry, nothing has changed. I'm still a walking disaster.

***

Kiddo is good. We are homeschooling. Last year was just a mess of nothing good. Shooting incident at the school that was horribly mismanaged by the staff. A bullying incident involving death threats and the bully's parents were so nuts, I just thought 'why am I sending my kid to school with everyone else's damage? why?' And the teachers were not good which meant the academics weren't good.

At one point we were teaching her math, not her teachers. They couldn't get it done. I said to my husband, 'Why are we killing ourselves to go to this school? All this car pooling and schlepping for what? Our kid to be bullied? To have real life experience with school shootings? To have teachers who teach in such a way that our 99th percentile math kid gets an F on the fractions test? To have teachers who never finish a damn novel study in ELA? What are we doing this for?'

None of us were happy and we didn't want to go back, but our school options were limited. I couldn't even find a private school that I felt would be a good fit. So we're homeschooling, and surprisingly we kind of love it so far. It's going really well.

We're about a month in and just working to fine tune our curriculum as some things we've liked and others we're finding to not be a great fit, and figure out our pacing (we've adjusted the work load several times trying to find the right balance).

For those who are now freaking out about socialization:

1. I've followed homeschooling for 10 years as I've always supplemented her education. People who harp on socialization just sound ignorant. I can tell you've read exactly nothing and know even less. You should do some research.

2. Girl scouts. Church. Live online classes. A coop. Small group for World History. Theater workshop every week. Makers club at the library. Folk dance troupe. Homeschool band class taught by certified teachers through a non profit. Yes, we are doing all that on top of book work. We've already covered way more than she did last year in school and it's only been a month.

Like I said, you don't know what you're talking about.

***

Writing. The industry went to hell, but I am surviving. I focused on quality over quantity and it worked. I'm not getting rich, but I don't need a day job. I have the skills I need to do this writing thing, I just need to wield them better, which I think will happen with time.

I feel seasoned. Like I know how to roll with the punches now. We'll see how long that lasts.

However, I do need to be healthy to make writing work. That's been the big challenge recently. Having the energy to work when you're in pain and not sleeping much and either not eating at all or subsisting on ~400 calories a day of jello and broth is tough.