Tuesday, November 13, 2018

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.




Friday, November 9, 2018

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.










Tuesday, November 6, 2018

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.

























Thursday, November 1, 2018

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. :)

Tuesday, October 30, 2018

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.











Friday, October 19, 2018

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.



Thursday, October 18, 2018

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.