Violet the Cat by begonias in “our” condo, 2005


Part 2:  What’s Going On In This Belly of Mine?

I published the first in this series way back in June. And I fiddled around way too long with that article. Then I wrote the second one a lot faster, thought I was on a roll. Wrote the third and ran into a wall.

You know how you can discover things, like the truth, as you’re writing about something you thought you knew all about? Then find out you didn’t realize it had this giant toad sitting somewhere in the middle or the very end? Yeah, that happened while writing about my first endoscopic procedure in that third article.

I was writing everything as I remembered it, but all of a sudden I turned into the reader – not the writer. Palm to forehead – omigod, this is all about malpractice shit happening to…me.

I spent the next two months coming to grips with that realization, then trying to decide what to do about it. But especially how to write about it. I came to this conclusion: Just leave a lot of details out (who cares anyway, right?), and just go with that.

Problem: Because of what had happened, I learned a lot about how to advocate for myself in medical situations where things seem way over my head. Turns out, they’re never over anyone’s head as long as they are sentient, conscious, and they feel like something’s very wrong. So I have to include all those gnarly details.

This series will eventually be turned into a Transplant Guidebook (its working title) for people in pre-transplant settings, especially those on waitlists around the country (about 125 transplant centers in all). The transplant waitees and their caregivers need to know, really need to know, how to advocate effectively, in the worst possible conditions. They happen.

Okay, here comes Part #2 in the series.

I was getting discharged after a four-day stay from hell, and talking to a doctor about their plan for me. He and the gastro team were recommending gallbladder surgery. The results of the tests were not compelling for that – no stones but the gallbladder was “sluggish.” I decided to go along with surgery if that would prevent the level of pain I’d had. But I wanted to stay in the hospital and have the surgery right now. The doctor patiently explained that the surgery would then be open (very messy, big scar), not laparoscopic.

Then he told me the alternative to leaving: psych ward. (Huh? Was he a secret agent for the psych ward?)

This episode could have brought on the psych ward business:  One night, about three days after admission, middle of the night, I went bonkers, screaming loud as I could, and all paranoid about what my completely bedridden roommate was doing to me.

This was because of all the morphine I’d been given. Every four hours, another big dose of IV morphine, over four days (96 hours = 24 doses). Up to the psych ward “offer,” I had given my care an A+; today I’d give them C-. Starting right out Day One, being offered one Tylenol for a full-blown migraine, my usual medication Imitrex. Then the continuous morphine. Newsflash:  Morphine and almost any opiate/narcotic turns ordinary people into beasts. Not a good hospital stay. So, psych ward? Weird at best.

Finally, I agreed to see a surgeon to decide whether or not removing the sluggish gallbladder would help. I left the hospital with some friends who took me home to my 1-1/2-year-old tuxedo kitty. (Violet had mixed feelings about seeing me, because cats.)

I went to the brand-new version of University of Colorado Hospital in Aurora, not near my home, to see my would-be surgeon. The first Hot Doctor I’d ever met. Fortunately, he was a lot more than just handsome, tall, blonde and blue-eyed – he was smart, honest and had a good sense of humor. He told me there were only two chances out of three that removing my gallbladder would cure whatever was wrong with me. I answered, full-on flirt by then, “Well, two out of three isn’t bad. I’ll do it.” Dr. Robinson (the Hot Doctor deserved a name by now) laughed, agreed and we set a surgery date.

I had to arrange two rides to and from the hospital. Two men, both boyfriends of two very good girlfriends of mine. Tim took me to the hospital, went to the second floor waiting room and we said goodbye, good luck, all that. He reappeared a few minutes later with a small blonde Gund teddy bear he handed to me. He said he was worried about me having to wait alone. Now I had this plush little bear to hold onto. (Yes, I still have that bear Timbo.)

I was taken to the OR after I was pre-sedated (that was fun), and breathed myself into a mask to sleep. Mid-surgery apparently was exciting, but I was still out. I did get the results of a discovery Dr. Robinson made with his micro-camera. He looked around inside and noticed the liver didn’t look normal, so he called the Liver Team mid-surgery and asked them what they wanted him to do.

I was in a hospital with a transplant center, in fact, the hospital where the first liver transplant was performed in 1963. (Well, first successful one was four years later – the patient survived). This was just a lucky quirk of fate and because of my insurance coverage (grad school, University of Colorado, remember?).

Liver Team told him to do a liver biopsy then take blood post-op for a metabolic blood panel and other tests that check your liver status. I had turned into a liver patient mid-surgery.

Dr. Robinson explained to me about the liver variance, but I was too groggy to understand the gravity of it. Liver something and biopsy. Then someone came and took four vials of blood. Still trying to wake up, I wondered, they must do this for all surgery patients? I was puzzled but too out of it to ask or be alarmed. Then Roger, my #2 ride, came and picked me up.

I had a post-op appointment with Dr. Robinson in a week, when he told me I needed to make an appointment with a hepatologist at the hospital. He also told me some worrying news (I excel at Worry 101 all the way to post-grad): The lab had found a small tumor inside the gallbladder and could see its cellular tracks all the way to the common bile duct (connects with the liver), where they had chopped off the little green organ.

My eyes welled up with tears and I couldn’t talk, but he told me not to worry and then some other stuff I forget now. Something like, we’ll wait and see, or I can send you for more tests, that kind of stuff that’s no fun to hear. He said the pathologist named it “Carcinoid.”

Since I had no idea what that was, I pushed the big Research button. I combed the internet, talked to people I knew, and found a woman in Florida with an advanced case of it. It was a terrible, very painful, debilitating disease. Just great. I’m trying to live my life here, Body.

I’m good (and now even better) at research so I found this doctor in New Orleans who was The Doctor to talk to about carcinoid. I wrote to him via email, and he replied right away with his home phone number. What?

I called him when he said it was a good time to reach him, and he got me up to speed on this new thing. He had one of those Bayou/Orleans accents, told me about his hound dog and good BBQ. He was funny but smart and to the point. And he reassured me. But still I had to wait to see if anything developed further with the “C” word.

I called the Hepatology Clinic at UCH in early June, but I couldn’t see anyone till August. In the meantime I got an infection in my bellybutton (where they pull out the gallbladder), so went back to Dr. Robinson. (I wasn’t minding these visits so much!) He asked me about the hepatology appointment, and I told him I couldn’t get in till August. It must have been more urgent than I thought because he asked his nurse to get “Lisa” on the phone for him. Then I had an appointment with Dr. Lisa Forman in June. Hot Surgeon to the rescue again; he got me an insider’s appointment with “Lisa” in a couple weeks.

Outpatient Clinic was back at the old building on 9th Avenue and Colorado Blvd. I went to Hepatology and checked in with Gerrie and had vitals taken by Norca. I’m naming these people because I got to know them really well over the many years to come; to the point I could just walk in and they’d greet me with, “Hi, Dana, how are you?” or “Dana, you don’t look so good,” and give me the wrinkled brow of concern.

I met Dr. Forman in the exam room. She was (and is) tiny, short and slim, with almost-black very short curly hair and dark eyes that didn’t miss a beat. She also had a small pregnant belly. She did a short exam of my abdomen and asked how I was doing after the surgery. I told her about the carcinoid.

Then she turned around to the counter by the window and pushed this dark red plastic model of a liver, about six inches high and eight inches across. “This is a liver,” she began, “and this is what a normal one looks like.” It was completely smooth and shiny. Then she turned it around and the surface was full of bumps and icky to look at. “This is what your liver looks like.” I grabbed that sucker and turned it right back around to smooth and shiny. I said, “I don’t like that other side.” So adept at denial. Then I saw her wry sense of humor when she gave me the first of many smirky little smiles she was famous for. I got her drift – you can deny it all you want. But it’s not going to change.

She explained that the bumps were fibrosis, what comes before cirrhosis, and that’s why Dr. Robinson had called the Liver Team mid-surgery. He had seen that icky, bumpy surface and trouble ahead. He was smart. But dang.

Her voice stayed the same way all the way through the exam and chat, if that’s what you want to call it. She wasn’t chatty. But I knew right then she was smart and perceptive as hell. I liked and trusted her.

She referred me to someone else for a procedure to start diagnosing what liver disease I had. The new doctor was an endoscopist, and from him I learned about Endoscopic Retrograde Cholangio-Pancreatography. ERCP. I saw this new specialist (whose name I’ll never reveal in this setting – see what I wrote above in para 3) in the Gastroenterology Department for consultation. Dr. Forman also sent me to an oncology surgeon about the carcinoid business.

The search for a diagnosis had begun in earnest now.