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.