* That way, I can see what’s going on in your bile ducts, get a better look at what’s going on in there, and maybe take a biopsy.” An alarm went off in my head. “Uh…” “So I’d like to schedule that as soon as possible,” he said. “But I can’t have that done, can I?” I said. “Because of the weight loss surgery?” “Oh!” he said, and I could almost hear his palm hitting his forehead. “You’re right, I’d forgotten about the gastric bypass. You’re right, we can’t do an ERCP since you had the surgery.” A long silence as he thought about it. “What we’ll have to do is keep a close eye on your numbers. Like I mentioned when you were in the office, there’s a higher risk that you could develop bile duct cancer – 10 percent of PSC patients develop it – and I’d like to do a tumor marker test on you at least yearly.” I wrote frantic notes, wishing I had a recorder on the phone, because I was sure there was going to be something he said I wasn’t going to remember right. “Now there’s no way to cure PSC – it’s a disease of the biliary tree – but there’s a medication I’d like to start you on. You’d take it three times a day… no, wait. I think I’ll prescribe Urso. It comes in 500 milligrams, and you’d need to take it twice a day.” We had a brief discussion about where I wanted the prescription called in. “Now, the only other thing – PSC is often associated with Ulcerative Colitis. You don’t have Ulcerative Colitis, do you?” “No,” I said. “Your bowel movements are okay?” I blushed, even though he couldn’t see me, and no doubt as a GI he’s elbow-deep in shit the majority of the time. “Yeah, they’re fine.” “Okay, well I’ll call in the prescription, and you’ll start on it twice a day. Call the office and make an appointment to see me in three months for a routine followup, so we can see how you’re doing and check your numbers, okay?” “Okay,” I said. “Have any questions for me?” he asked. “No,” I said. “Okay, well, take care and I’ll see you in a few months!” “Okay. Thanks for calling,” I said. I hung up the phone and went upstairs to tell Fred that the doctor had called, and what he’d said. And Fred started asking me questions to which I had no idea of the answer so we both came back downstairs and spent a good part of the afternoon Googling and finding out more about PSC. For instance, Primary sclerosing cholangitis is most prevalent in males (3 to 1 ratio to females) under 50 years of age in association with ulcerative colitis (75%). Most often, the first manifestation is biochemical, with elevation of alkaline phosphatase. Further advanced disease may result in episodes of acute cholangitis, with fever and perhaps jaundice. The disease is still considered relatively slow progressing, with a period from asymptomatic to symptomatic disease of 10 to 15 years. Once symptoms develop, liver transplantation is not uncommon within 5 years. Not only did we spend a good part of the afternoon Googling; we really spent most of the weekend sporadically Googling around, and the more we Googled, the more we realized we didn’t know. By 4:30 Friday afternoon, I decided I was going to make an appointment with Dr. GI so that I could see and talk to him face-to-face, and I was going to make Fred go with me. I wasn’t able to get ahold of the office Friday afternoon, so first thing Monday I called and ended up with an appointment Wednesday at 3:15. After I called the office and made the appointment Monday, I did a stupid thing. I opened up Google, and I typed in “Life expectancy for Primary Sclerosing Cholangitis patients”. And what I found scared the SHIT out of me. Because I was seeing five years, I was seeing three years; the longest life expectancy I was seeing was 17 years. I’m 38. 38 + 17 = 55. 55 is TOO YOUNG. I didn’t want to die when I was 55! I immediately started having mini panic attacks, where I’d be doing something like folding clothes, and I’d tear up and couldn’t breathe, and had to go lay down until I could breathe normally again. I was able to hold it together when Fred was home – because he was distracting me from my worries – but during the day it was happening once or twice an hour. I think it’s safe to say I was freaking out. I told Fred on Tuesday that I planned to ask Dr. GI what the average life expectancy is for patients with PSC. “WHY would you want to ask such a morbid thing?” he objected. “Because I want to know!” I said. “Well, I don’t!” “Then I’ll ask you to step out of the room so I can ask him,” I said. “I don’t think you should ask,” he said. “Well, we’ll see,” I said, knowing that I was going to ask. Wednesday came, and all day long all I could do was worry about the office visit with Dr. GI. What if he told me I needed to get on the organ transplant list right away (my Googling indicated that sooner or later all PSC patients need a liver transplant)? What if he told me if I were lucky I’d get 5 good years? What if he wanted to do another liver biopsy? I took Fred to work Wednesday morning, then left the house at 2:45 to pick him up and head for Dr. GI’s office. We only waited for a few minutes in the waiting room, then went back so that the nurse could take my blood pressure, temperature and pulse (all of which were higher than they’ve been recently; more on that in the next section). We sat in the exam room waiting for Dr. GI to come in for a few minutes and made nervous conversation. Dr. GI came in and basically re-told Fred everything he’d told me on the phone. He went over exactly what PSC is again, we had a long conversation about the disease, and then I got out my list of questions. 1. How do you know this is Primary Sclerosing Cholangitis rather than Primary Biliary Cirrhosis? (Primary Biliary Cirrhosis is seen more often in women than men, and has a lot of the same symptoms) Because Primary Biliary Cirrhosis doesn’t involve abnormal ducts the way PSC does. 2. What percentage of PSC patients end up needing a liver transplant and in what time frame? (Because Google seemed to indicate that it was pretty much 100%) He couldn’t really answer this, because as he said, PSC patients don’t need a liver transplant until cirrhosis occurs. He personally only has two other patients with PSC, and it’s such a slow-moving disease that he hasn’t seen cirrhosis in either of them. 3. Since the ERCP is the definitive test and I can’t have it, are there other options? Surgical options? Fred asked if there wasn’t a way to get in there laparoscopically, go through the intestines, and get into the liver that way. Dr. GI said that it was possible, but the recovery time from something like that would be too long to make it worth it. There’s something called a Percutaneous Transhepatic Cholangiogram where they basically go into the liver from the top, inject dye into the liver and get better x-rays. If they’re concerned about cancer showing up, they might do that, but for now he’s confident enough in his diagnosis of PSC (which he got to by eliminating other possibilities as well as following the signs that pointed to PSC) that he doesn’t want to do the Percutaneous Transhepatic Cholangiogram. 4. There are Vitamin A, D, E & K deficiencies with PSC. Do I need to worry about that? Those deficiences only start showing up when there’s an issue with cirrhosis. Since I’m not cirrhotic at this point, it’s not a worry. 5. Do I need to get vaccinations for hepatitis a & b? Definitely (this is the first question where he appeared impressed by a question), because if I were to contract either of them, it could be a bad hit on my liver and could cause problems. Guess where I need to go for the hepatitis vaccinations? The Health Department. FUN. 6. Is my bilirubin continuing to go down? It is; it went from 4.1 to 3.7, and has gone down further than that. Dr. GI went on to say again that PSC is a very slow-moving disease, and that with the medication he was prescribing for me, it would probably slow down even more. In fact, he said “Once you start the medication, you may never show another symptom.” Fred smiled at me. “You might as well ask your morbid question, now.” Dr. GI looked questioningly at me and I blushed. “He doesn’t want me to ask what the life expectancy is for patients with PSC,” I said. Dr. GI said, basically, that since it’s such a slow-moving disease, he just didn’t know the answer to that. I might never develop cirrhosis of the liver, never need a liver transplant, and like he said – as long as I stay on the medication, I might never show another symptom. I’ve gotta say, he made me feel a lot better about the whole thing, like it wasn’t a death sentence. Might I develop cirrhosis and need a liver transplant at some point in the future? Sure, maybe. I also might be driving to Target tomorrow and get run over by a semi. We’re all going to die; I was just glad to hear I had a chance get old and crabby (instead of young and crabby. Ha!) As we were ready to leave the exam room, Dr. GI pointed out that some doctors might be annoyed by our liberal consulting of Dr. Google, but he thinks that it’s a good sign – someone who’s done a lot of research about their disease is concerned about their health and interested in being informed as much as possible. That’s how I feel about it, too. Then I suggested that Fred and I should have t-shirts made up that said “I got my medical degree from Google”, and he (Dr. GI) laughed. On the way out I stopped at the lab and had blood drawn so that we could get baseline numbers to go by in the future. I made an appointment for December, and then we were out of there. And that, my friends, is what’s going on with my liver. I have a disease that predominantly affects young white men, a disease that is very slow-moving and will necessitate taking Ursodiol for the rest of my life. Please note: I love you all and know how helpful you like to be, but please keep in mind that I am under the care of a very competent gastroenterologist, one I trust a great deal, and he and I will determine my course of treatment. I’m not going on any herbal diet, I’m not going to try this medication or that, I don’t want to hear about your uncle’s cousin’s mother’s brother who had PSC and died a horrible, painful death, okay? Please. Thank you. Mwah! Unsolicited advice makes my liver hurt. * This is not really what he said; I got the explanation via Google to explain it to y’all!
“Argh! I know there’s a way through here….”
And yes, she’s a month old as of yesterday (that’s with a guesstimated date of birth, granted), and we’ve had her for two weeks now. It’s amazing, the amount of change she’s gone through in those two weeks. Here are a couple of pictures to compare her then, and her now:
Like Fred said, she looks more like a cat and less like an alien now. Look how much her ears have grown!
All of today’s pictures can be seen hither.
This is Charlie, who belongs to Treena. Treena says, This is Charlie – she looks pretty ferocious, right? It’s all an act, she’s a total flirt – her nickname is Saucy Whore.
My husband randomly snapped this pic like six months ago, and to this day is way more pleased with it than he should be. He uses it as his icon for EVERYTHING…and sends it to me at least once a week under some clever ruse. I am really going against my better judgement sending this to you, because if you post it, I’ll never hear the end of it
I am somehow charmed by the idea that he sends the picture to you under some clever ruse, Treena. That completely sounds like something I would do – and I have to say, I’ve used this picture as about every user icon I have, so I can relate to being proud of a picture.
This is Dusty, who belongs to Carol. Carol says, Dusty is my wonderful Lawrence, KS humane society kitty. He has lived with us since March. We also have a 19 year old from the Pensacola, FL humane society.
This is Gimp, who belongs to Amanda. Amanda says, I think you have seen this picture before, but I think ol’ Gimp is ready for
the big time now. Sweet Gimpy is the only creature in my house who will yawn for the camera…
I also have two other cats, a husband and a 2-and-a-half-month-old baby!
They sure hate when it rains (though Tommy has been known to go out and play in the rain. No one told him cats don’t like to be wet).