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Viewing 15 posts - 1 through 15 (of 23 total)
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  • I hate the smell of alcohol
    I hate 4×4 squares of gauze
    I hate measuring bile from my drainage bag
    I hate how pathological I’ve become about taking my temperature
    I hate that I can’t enjoy an apple martini anymore
    I hate that my kids worry they might “catch” liver cancer


    in reply to: repairing hole in bile duct #36623

    Still dealing with leaky bile duct. The doctors are considering using a non-porous sheath to cover the hole. I guess this sheath is used for repairing arteries not bile ducts. I’ll let you know if they decide to go ahead….could be a good thing if it works. If it doesn’t work, its back to the drawing board. In the meantime, I’m still draining to 2 external bags, taking 2 antibiotics, trying to stay out of the hospital. The good news is I’m feeling pretty good, have put on some weight and can get out and about so something must be working :)

    in reply to: Third time lucky– right?? (bile drain) #38374

    Hi Kristen,
    I’m assuming yesterday’s drain #4 was done as outpatient, right? Is there any way they can admit you and do this procedure? That way, you’re right there if something goes wrong and they can fix it. Yes, this will get resolved for you and you will start to feel better. I’ve gone through several types of drains as well. My doctor modified one by putting more holes in it.
    Kristen, I’m sending hugs and kisses.

    in reply to: Third time lucky– right?? (bile drain) #38369

    Hi Kristin,
    I’m sorry to hear you’re having problems with this drain. Perhaps you have called the doctor by now. Let me know how you are. Everyone’s giving you great advice re. this problem and I can’t think of anything else to add except to say,”Hang in there sister!”

    in reply to: What to expect? #37334

    if you need a second opinion regarding the stent placement you could try the interventional radiologist I use, Dr. Mark Sands. He is with the Cleveland Clinic downtown campus. i have lots of issues with my bile duct and i’ve been seeing him off and on since last april. he’s very bright, thorough, kind, perseveres even when i feel like giving up, always good for a pep talk! hope your dad feels better once the stent is in place.


    in reply to: External Drain, raising biliruben levels…. #38096

    Hi Jennifer,
    By external drain, I’m assuming you mean internal stents attached to an external bag. I have 2 external drains and I agree that it needs immediate attention. I have had lots of problems with my drains getting “plugged” up with bile but I’ve never seen food come through the way you are describing. Does he have a temperature? I’ve always been sedated for the drain placement procedure – they give me a combination of versed (mild anesthesia) and fentanyl (pain relief).


    in reply to: Its Whipple Time Again #37878

    Good luck! I’ll be thinking of you and sending good thoughts your way. Please let us know how everything goes.


    in reply to: repairing hole in bile duct #36619

    I feel like I’m losing my mind. Every time I see my doctors I get different versions of the same story! First, they can’t find the leak, then they can find the leak, then its a new leak, then its a stricture…its making me nuts! I really pressed my surgeon for some sort of plan other than see you in 3 weeks and he said he didn’t know…the leak should have healed by now and since it hasn’t maybe I can qualify for a liver tansplant if I make it to 2 years w/o a reccurence…..but at this point, a surgical fix doesn’t seem to be an option. So I asked, “What am I supposed to do until then?”…no answer. So then my radiologist said he could see the leak and it should heal and if not, it can be surgically corrected. I don’t know what to think anymore. Sometimes, I think this is just too complicated for me to understand but then I think, I’m no Albert Einstein but I’m no dummy either. I’ve decided its time to seek another opinion. Maybe another set of eyes can clarify things for me. I’m talking to the Mayo Clinic in Rochester.


    Hi Kris,

    Kirs, I really feel for you. I hope you can get going with your treatments soon. Who knows, maybe this time things will work out better in Linkoping. But I do understand how emotionally and physically fragile you are feeling. You are one tough cookie.

    Hugs from me,

    in reply to: Does CC Cause Chills #37716

    I get the chills all of the time and I’m supposed to be cancer-free (my docs keep checking and checking for a recurrence). The only time I get the rigors or really violent shaking is when I’m running a temp. and an infection is coming on. In my case, if my temp. rises, even to 99 degrees, I’m on the phone to my doctors. I echo what everyone else is saying about putting a call in to your doctor.

    Hope your Dad is feeling better soon.


    in reply to: repairing hole in bile duct #36618

    Well, not much news regarding my recent tube change and cholangiogram. The doctor said the abcess cavity is smaller (good news) but the bile duct is still leaking. My next appointment is in about 2 weeks.


    in reply to: frustration reigns #37646

    Kris – I am so upset for you. I haven’t got a clue about what goes on during surgery but it seems like common sense to get a tissue sample of a tumor. How can someone “forget” something like that? C’mon doctors – get it together!


    p.s. YES, you deserve a break…you’ve been through so much.

    in reply to: Advice on — PICC Lines, Portal Catheter etc. #37640

    I have had PICC lines 4 times and they are truly wonderful!!! It helped ease my needle anxiety in the hospital and at home. I have had PICCs inserted from my hospital bed and also in the Radiology department. For me, the procedure is a little nerve-wracking and painful but once its inserted, its pretty comfortable. Removing a PICC line is easy and painless. I had a “power PICC” so that blood could be drawn, dyes injected, meds administered, etc…. I also had 2 “lumens” so I was able to receive 2 antibiotics at the same time. I never had problems with infections but have had numbness down the back of my upper arm due to some nerve damage (the feeling is returning). I have also found that only a nurse trained in using a PICC line can do the blood draws, etc….I highly recommend PICC lines.


    in reply to: how to help #37387

    Dear Friend,
    I didn’t have the whipple surgery but a liver resection….its major surgery as well. It took me about 6 months before I was really feeling like myself again. I was 48 years old and in pretty good shape prior to my surgery. The things that really saved me and continues to help me are DVDs…I subscribed to Netflix and got hooked on TV series. My friends also pitched in and bought me an Ipod touch! Can’t tell you how much I use that. I couldn’t manage without it anymore. It was wonderful to have in the hospital because I could download anything I wanted right from my hospital bed. Everyone does heal differently and at his/her own pace but you might consider cautioning your friend to lower her expectations just a little bit. I know I was told I would be up and around in about 10 days and I was really concerned and disappointed when I wasn’t.


    in reply to: repairing hole in bile duct #36615

    Hi All,
    I ran into problems yesterday when one the bags stopped draining for about 8 hours. So, I had to go in today for a tube change rather than wait until Monday….didn’t want to run the risk of becoming septic again. The only information I was given after today’s procedure was that the cavity formed by the abcess is smaller. I’m going back in 2 weeks for another look. I get so annoyed because the more I try to pin my docs down for information, the more confused I become. I really need to whine tonight. I’m so sick of being stuck with needles, poked with holes, having dye pumped through my liver, being sedated, taking antibiotics !!!! Anybody else out there feeling the same way today?


Viewing 15 posts - 1 through 15 (of 23 total)