Re: Intro and questions ...cpl more questions. (Sandi)

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Sandi,

Thank you so much for your reply to my questions. I'm sorry to hear you have been in the hospital, but glad you are no longer there. I'm sure you feel better just being home.

As for Nick's diagnosis- our liver specialist told us it was severe liver disease,but not PSC even though that was what he was leaning towards first. We were told it is some place on the spectrum between AIH and PSC. That is confusing to me. He said it was though Nick's bile ducts were the limbs of a tree getting smaller as they spread up through the liver. He said it looked like someone had over pruned the tree. He told us a significant amount of Nick's small bile ducts were just not there anymore. I think he said they had scarred up and broke off.(Not sure bout that tho.) He is calling it secondary biliary fibrosis with portal hypertension.

Also, thanks so much for posting the list of questions for me. Thanks to Ross Heil for compiling the list originally. This is going to help out a lot. There were definitely somethings on there I hadn't even thought of. So far the doctor has told us to keep doing what we are doing as far a diet. ( normal diet) Doc mentioned we could add a children's multi vitamin, so we have.

Just to warn everyone- I have a few more questions bubbling already....

Thanks,

MO.

son, Nick(9) liver disease 09

Subject: Re: Re: Intro and questions ...cpl more questions.To: Date: Sunday, March 29, 2009, 10:21 AM

,Hi! I've been in the hospital for a bit and I'm sorry it took me a while to get back to you. It sounds like the doctors aren't sure about Nick's PSC diagnosis. Is that right or did they definitively diagnose PSC at this point? Don't beat yourself up for not knowing the "right" or "specific enough" questions to ask. All of this is hugely overwhelming at the beginning (and sometimes after) and I can't even imagine how much more so when it's regarding someone you love as much as your child! We all get a little brain-scattered in the face of the docs, so let yourself off the hook a bit and just be doubly prepared next time! :)One of our members (Ross Heil) has compiled a list of questions to ask doctors. They'll need to be modified a bit, but I figure at the very least they could give you a starting point. Here's the list:PSC Questions for New PatientsShould Ursodiol play a role in my management of

PSC? If yes, what dosage?Should I consume alcohol containing products?If I experience itching from my liver disease, also known as pruritis, what can I do to gain relief? Is grapefruit juice ok to try? Phototherapy with tanning beds?Is it safe to smoke Marijuana with known liver disease such as PSC?Are fish oils an acceptable supplement? If yes, what dosage would you recommend?How often should I follow up for an office visit?How many cases of PSC have you managed in the past and currently?What do you think about getting a second opinion?At what point would you want me to call regarding symptoms, and forwhich symptoms would you want me to go straight to an ER?Can I have my routine labs drawn before my appointments so that wemay discuss the results in person?Are any of my current medications problematic?If I have a headache or musculoskeletal

pain what over the counter medications would you recommend? What should I avoid?PSC Questions for follow up visitsUpon average, when does bile duct cancer (cholangiocarcinoma , aka the Klatskin tumor) arise from the time diagnosed with PSC? Does Ursodiol decrease the incidence of cholangiocarcinoma? What about decreasing the chance of colon cancer?If bile duct cancer is suspected and brush scrapings are done, will you send the sample to Rochester Mayo for FISH staining?How often do you recommend an ERCP or MRCP?How often should I have a colonoscopy?How often should I have an abdominal ultrasound? How did my gallbladder appear? Any evidence of ascities? Any specious lesions?How often should a CA 19-9 level be drawn?How often should my INR/PT, Albumin, AST, ALT, Alkaline Phosphatase, Total Bilirubin, and Direct Bilirubin be drawn?What is my MELD score?Can I have a

copy of my blood and diagnostic test results?How frequently should I be checked for fat soluble vitamins (Vit A, E, K, D) levels?Should I take Fat Soluble vitamin supplements? If yes, what dosages?How often should a bone density test be done?What vaccinations are required since I have liver disease?I hope these help! Sandi in VA/Rochester