9/25/06

* 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!

* * *
Addendum: Dr. GI called this morning to let me know that he’d gotten my blood test results, and my liver panel is lower than it’s been in the last few months. The tumor markers came back completely normal (ie, there’s nothing indicating that I’m tumorous) and everything looks good. He also made sure to say that I should keep taking the new medication (which, yeah, I was planning on doing), and he’d see me in three months.
* * *
When the nurse at Dr. GI’s office was taking my blood pressure, temperature, and pulse, I noticed that they were all higher than they’ve been lately. I don’t remember what my blood pressure or pulse was (they were well within normal ranges, anyway), but my temperature was 98.4, as opposed to the 97.3 it’s been. “I think my blood pressure and pulse have gone up because I’m stressed!” I said to Fred when we were waiting for Dr. GI. “I don’t think so, Bessie,” Fred said. “I think it’s because you’ve gone off the Metoprolol*. Its job is to lower your heart rate, which it did, and I bet that’s why your temperature was low, too. Have you been less cold lately?” “I have!” I said. “Then there you go.” Indeed. *I took myself off the Metoprolol because I felt like between the supplements I have to take every day and the Metoprolol, Synthroid and Birth Control pill, I was always popping a pill. So I went off the Metoprolol and the birth control (since the only reason I was taking it was to regulate my period, and lately it wasn’t doing that worth a shit), conscious of the fact that if I started feeling heart palpitations I’d have to go back on it. It’s been a few weeks now, and I’ve really only had one episode of my heart palpitatin’, so I’m planning to stay off it. The irony here is that no sooner do I get rid of two medications than I get prescribed another one I have to take twice a day. Urgh.
* * *
By the way, what THE HELL did people do before Google? How did they ever find anything out? I know that there was a time when I could somehow figure out what a song was without being able to type in part of the lyrics in a Google search box, but I’ll be damned if I remember HOW I was able to figure that out. Google’s going to take over the world, isn’t it?
* * *
Miss Maddy continues to do well. She’s a little more interested in the soft food. Over the weekend I took to putting some soft food in an oral syringe and squirting a little into her mouth at a time. Yesterday was the first day she was actually interested in having more of it. Not interested enough to eat it off the plate, mind you, but we’re heading in the right direction, anyway. I know she can lick, because she licked my arm last night, and I know she can bite, because she’s a bitey little brat, now all I have to do is convince her that she wants to eat food off a plate rather than having it shoved in her little princess mouth at every feeding. She’s up to 15 1/2 ounces as of this morning. She’s been playing a lot more, and showing interest in the big cats (who lose their little minds and run away when she runs toward them). Fred scared her last night, and she hissed at him. My baby is growing up! I think she’s going to be a feisty little thing. Oh, and did I mention she’s using the litter box exclusively? Pooping AND peeing. No more cat pee on my hands – and I can’t say I miss it! She might have a ways to go in the brain department though – really, what can you expect from a one-month old? – because she’s not quite getting the whole “doorway” concept. When I go in to the kitten room and she sees me, she gets all excited and runs over to the door. I open the door, and then she does… this:   “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.    
* * *
Reader yawny pet pics!
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!
You guys have got some seriously gorgeous (and funny!) cats. I’m loving the pictures I’m getting – thanks for sharing, Treena, Carol, and Amanda!
* * *
Dsc01201 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).
* * *
Previously 2005: No entry. 2004: No entry. 2003: I’m sure my tendencies toward dumbassery has something to do with it. 2002: Sometimes when I’ve just finished doing my Firm tape, I feel like my brain is leaking out my ears. 2001: Maybe I should just shave my head. 2000: No entry.]]>

43 thoughts on “9/25/06”

  2. I don’t know if it’s b/c I’m hormonal or what, but I laughed so hard at the pics of Maddy trying to get out of the “door” to her cage that I cried. I REALLY needed the laugh today, so thank you very much.

  3. Gosh, I hate to say this, but I know someone who nearly died of horrible painful Google-induced stress… ;-D
    Sounds to me like you’re doing all the right things, and that your doc is not only competent but appreciative of the humor we’ve all grown to know and love from you and Fred. Can’t ask for better than that. As for the “morbid question,” I’d have been right there with you on it; I’d sure want to know!!!
    I shall continue keeping fingers and toes cross that all keeps going well with your health (and that the trip to the Health Department isn’t utterly heinous!!!). Well, when my hands aren’t flying to my face, gasping at the Maddy cuteness, that is.

  5. Robyn! Wow – you have had a lot to deal with health-wise, lately. I can totally understand your panic, but I’m SO SO glad that you have a great (patient, understanding) doctor. Big keeses to you and your poor little livah.

  7. Robyn…Hugs to you!!! My one burning question…Are you going to tell your MOTHER?
    You will live to be old and saggy!!

  8. The photo of Maddy trying to figure out how to squeeze through the bars of her cage was great. It’s so typical cat.
    I’m curious to know if your liver issue has anything to do with gastric bypass or if this would’ve happened even without the gastric bypass?
    Also- most of the doctors I’ve dealt with have been very encouraging of me doing research online, but the ones who poo-poo the Internet have been giant jerks, so there you go.

  9. follow-up comment:
    Blew diet pepsi out my nose seeing Maddy trying to get out the “door” of her carrier! That was soooo funny!

  10. Robyn-
    I haven’t been on your site in many months but I was shocked to see the discussion about the liver problem…because I think I could have the same thing! I had two HIGH Alkalyn Phosphatase tests (more than twice the upper limit) this past summer. I had an ultrasound but they didn’t find gallstones, just a fatty liver. They aren’t doing anything else, just redoing the tests in a few more months. Is that how this started with you? Did you have an ultrasound? I think I might mention PSC to my doc.
    Anouré

  11. I’m sorry to hear you were diagnosed with that. However, it’s better to know now since your doctor will follow your condition closely and there is medication to help you.
    The picture of Maddy squeezing under the open door is so cute! That’s great that she’s finally peeing, and pooping, in her litter box. Before you know it, she’ll be a big girl and into everything 🙂

  13. Of course I didn’t want anything to be wrong with your liver, but I am glad they finally figured it all out. {{{hugs}}} You will be fine, I just know it!

  14. Robyn, I’m so sorry you had to go through such stress, worrying about what effects the disease could have. I’m banking on you being around for a looooooong time to crack us up with your bitchypooness. 🙂
    That picture of Maddy trying to get out the door of her cage is one of the funniest things I’ve seen in ages!

  16. I know you said you don’t want advice, but…… HA! Just trying to be smart ass per my usual self. 😉
    Maddy is so cute trying to get out of her cage! She’s going to be a pretty little girl when she’s all growed up. Yes, I did type “growed.” LOL!

  17. I’m glad to hear that you FINALLY have a diagnosis of what’s going on with your liver. Take care of yourself and make Fred do all the housework. Use “my liver hurts” as your excuse!!!!! 😀

  18. I’ve often wondered the same thing about what we did before Google. (re: your livah — sounds like you have a great doctor, and I’m sure you’ll grow to be old and crabby along with the rest of us.)

  19. OMG – I laughed so hard at Maddy’s pictures. Her little, squished face with the cage.
    Good luck with the liver. OBW – livers and kidneys are “easy” to transplant. “IF” you ever need one. LOL. My aunt has the kidney and will need the liver someday but not now. Thank goodness. Her friend donated the kidney without a 2nd thought. She had 3 offers that were matches on the blood/tissue types, but only needed 1!

  20. I have a favor to ask and I normally don’t ask anyone for favors, but I’m participating in the AIDS Walk for Atlanta, GA and was wondering if you would list the link to my donation page on your site.
    It’s legitimate, not a scam and I’d be more than happy to link others blogs to mine at http://www.thesecrazytimes.blogspot.com.
    The link to donate is here:
    http://walk.aidatlanta.org/site/TR?px=1206207&pg=personal&fr_id=1070&s_tafId=3561
    I’m walking because I believe that AIDS affects each and everyone of us and that the beginning to a cure is through loads of education.
    I hope you’ll help.
    Sincerely,
    JR Estelle

  22. “what THE HELL did people do before Google?”
    I can tell you – Medical books. They were right next to the dictionary in the bookshelves in the book store. Most people I know have one or have one that belonged to their mother or MIL. I. Am. Not. Kidding.
    My book is red and is called, Modern Home Medical Advisor (Your Health and How to Preserve It) By Morris Fishbein, MD. It was probably published in the 1960’s, I haven’t really picked it up for years and years.
    So, before the internet people scanned through these Medical books…my BF’s mother still looks in hers when someone says they have something. LOL
    Sometimes these books are just as scary or more so than Google.
    Anyway, I am glad you’re taking your meds and I am confident you will be fine. 🙂 Take it easy.

  23. Robyn, you will live to be a hundred and twelve, because I said so. So there!
    Seriously though, sending love and hugs, and keeping you in my prayers.

  24. Hey Robyn,
    Good luck with that liver thing. 🙂
    I also wondered if it had to do with the w.l. surgery.
    Did you have jaundace when you were born or anything?
    Boy! the baby kitty really has changed! She’s soooo cute. I just remembered while reading this post that we used to start our baby kittens off on the kitten formula mixed with that “flakey” gerber rice baby cereal.
    They usual took to it right away.
    I’ve never had a doctor who appreciated my “google degree” lol

  28. Robyn, here in Texas most pharmacies, even the ones in the grocery store, will do the Hep. Vaccs. Maybe one around you will save you the multiple trips to the Health Department? (I hope that doesn’t count as advice. If it does, I fall on my knees in apology!)
    I’m so glad you have a good doc, a good medicine, and a *healthy* dose of Google-cillin!

  29. I think I told you before but in case I didn’t a co-worker who is also a very close friend just had a liver transplant this past Spring. She had non-alcoholic cirrohosis. Her Dr. told her that the biggest bug-a-boo was Tylenol! She used to take it by the handfulls when she had boss from hell.
    Remember we love you Robyn 🙂 And are just concerned. We know you don’t want or need advice.
    And I agree. What did we ever do before Google??

  30. I am googling my lung CT scan results as we speak – heh. I am in a clinical study for early detection of lung cancer … (in order to qualify I had to prove I was stupid enough to smoke cigarettes for almost 20 years.{I quit in 1989})… so many medical terms, so many googled websites. This will keep me busy for a few days.
    Robyn, I know you (and I) will be fine, because only the good die young. Keep that as your mantra!

  31. ROBYN!!!!
    Your poor bile ducts! Bad bile ducts! Bad bile ducts!
    I knew you were one in a million—just never knew it was because you had PSC ;D
    Glad to hear your numbers are coming down!
    Try not to worry and good luck with it all.

  32. little maddy is really changing, she is a cutie.
    I have 5 kittens(was 6, one got a new home) that i found 3 weeks ago as feral kittens. They are taming down real nice and hope to get homes for all of them.
    If you know of anyone in central Indiana looking for a kitty, let me know.

  33. Robyn would you stop with the medical concerns already Cripes, ENOUGH. (I am sure you feel the same way…) We worry about you!
    Love the kitty pic in the blue room at bottom. Great contrast with the white windows. Great job by Fred.

  34. Wow, can’t believe how much maddy has changed in 1 month!
    another one wondering about possible connection of wls surgery and this liver disease.

  35. The little kitty is so cute. Thanks for the many laughs that the cat pictures give me every day.
    I know you will take care of yourself and be wise about your health.
    FYI…I hate getting any kind of vacincations because the only place that has them is a clinic which is filled with cranky toddlers for MMR or crabby teens who need menengitis or hep shots.
    Just the place for middle aged woman who needs a hep shot. Good Luck with that.

  36. Hmm…..I notice Fred was the first one to respond!
    Having faith in one’s doctor and Google is a wonderful thing. Seriously, trusting in your doc is quite important in your treatment…duh! Like I’m telling you something you don’t already know.
    Hugs and positive thoughts/affirmations coming your way, girl.

  37. Before Google – I’d ask my mom, the hospital nurse. After Google – I found out just how wrong my mom was 9 times out of 10. Sorry to hear about your liver Robyn!

  39. Hey Robyn, I don’t know why bad things happen to good people. Please know that I will be praying for you every day. Indulge me in my faith. I love you guys.

  40. Good for you for being your own health advocate. I always say that no one cares about your health and future like you do, so you are a fool to simply take what a doctor says and not question it or do more research. My reproductive endocrinologist was often impressed with my knowledge of my issues and treatments and the ultrasound technician told me I should consider a career as an UT because of my ability to “see” and understand the ultrasounds I had. I’d explain them to my husband. (When you have one almost every week of your pregnancy you get pretty good at picking out all the different parts.)
    I’m sorry you got the diagnosis you did, but I’m glad you went back to your doctor with questions and got them answered. Fortunately the answers he gave were positive ones, considering. I freaked myself out so badly when I googled my issues after I got pregnant that I swore I wasn’t going to google or read anymore about “% of live births” and “infant mortality”. Sometimes a little information can be a dangerous thing too.
    And pictures of the little kitten trying to get out of her cage with the door wide open is the cutest things I’ve seen in a long time.

  41. Snerk. Those pictures of Maddy crack my shit up.
    Re: what people did before Google — My father was addicted to the tried-and-true Merck Manual. Once when I was about 6, I was thrown from my horse, and my dad called my pediatrician to ask all these questions about head trauma (I landed on my ass, but apparently my dad got the two body parts confused). My doctor was finally like, “LOOK, are you a doctor?” To which my dad replied, “No, but I have a Merck Manual.”

  43. Pingback: 9/2/10 – Crooked Acres Thursday | The mirror site for that other site.

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