Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

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  • #34648
    mlepp0416
    Participant

    Friday ended with Tom being back at the doc’s office and they FINALLY decided to check out the fluid on his abdomen! He had a parentesis done Friday at about 5pm…..he feels much better however his pcp said that his tumor markers are elevating again. Good news/bad news, how much more can he take?

    Doc wanted him to go inpatient for the weekend to which Tom said “No way, I was just there for 5 days and this was NOT addressed, so if you can’t do it outpatient then it’s not getting done”. Doc got it all set up and the procedure was done and only took about 15 minutes. Gotta know when to stick to your ground!

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    #34647
    lainy
    Participant

    Gee, Tom is the Pee Pee Giant and I call our Urologist the Pee Pee God! Good news and keep up the “stream” of good news coming.

    #34646
    mlepp0416
    Participant

    My hubby is a ‘peeing’ machine! He started on the diuretic this morning and has lost 11 pounds so far just by peeing. I did have to laugh when he told me he was down 11 pounds…that’s a LOT of pee!

    Per his Onc that we went to see yesterday, he was septic when he entered the hospital and they pumped a lot of fluid into him. Because he was low on protein, his blood vessels then start seeping fluid and that fluid then collects in the belly cavity. She stated that an infection like this can and will kill him so he has to listen to me when I tell him that it’s time to go to the ER (Yipee) I’m so relieved that this is not liver failure! I’ll take the low protein and iv fluids any day over liver failure.

    The game plan now is for Tom to come in every two weeks so they can culture the bile in the bag and the minute it starts growing something they will install a PICC line so I can administer the IV antibotics at home (No more inpatient hospital stays for him)!

    Hopefully once Tom is done peeing (LOL) his weight will return to normal!

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret

    #34645
    gavin
    Moderator

    Hi Michael,

    I am sorry to hear about your dad. I do hope that you can manage to get your dad into the hospital soon so that this can be looked into in more detail, and hopefully something can be done about it. Please let us know how you get on.

    Best wishes to you and your dad,

    Gavin

    #34644
    gavin
    Moderator

    Hi Margaret,

    I hope all goes well today for Tom with the draining, my fingers are crossed for him! When my dads feet swelled up, his doctors also told him to sit with his feet up when he could and that helped a bit and I hope it also helps with Tom.

    Best wishes,

    Gavin

    #34643
    mlepp0416
    Participant

    Marion: They did blood culture’s when he was admitted to the hospital and those were fine, they also did a culture on the bile from his tube and ‘something’ started ‘growing’ (enteralcoccus) and then treated him w/massive doses of antibotics…

    #34642
    marions
    Moderator

    Margaret….I forgot to ask: Had blood culture been done?

    #34641
    mlepp0416
    Participant

    Marion: No diuretics prescribed as of yet, but I did put his compression stockings on this morning and that has helped the swelling of the feet a bit. Also got him in the recliner with the feet elevated.

    MVB70: I’m not certain who will be draining the fluid, but I suspect it will be interventional radiology. Tom’s tumor markers have been on a downward trend and his alk phosphate numbers are down to 400 which are all good signs. So sorry to hear about your dad. At this point, Tom is not too uncomfortable, what with all that he has been through in the past 2 1/2 years, I know there were others things that we went through that were worse than this. I know that Ascites is not a good sign and I’m certain that his onc will be on top of this now that she is aware of it.

    Go with God and KEEP KICKIN’ THAT Cancer.

    Magaret

    #34640
    mvb70
    Participant

    Margaret,

    I am sorry you and Tom are going through this and I can somewhat relate. My dad finished his chemo in July and we went on vacation in August. We just got my dad’s results from his first MRI since his surgery which was October 14, 2009. The results were not what we wanted to hear. The MRI showed that my dad has Ascites and a subtle enhancement / thickening in his peritoneum. His oncologist pulled me into a room away from my mom and dad and told me he suspects my dad’s cancer has come back. They did a drained his fluid from his stomach and we found out my dad has a bad infection. He was admitted to the hospital and things went down hill quickly from there. The crazy thing is they discharged my dad when his stomach was so swollen that he is having a bit of a hard time breathing. My dad went into the hospital with a tiny bit of fluid where I could barely tell he was swollen and was discharged looking like he was 8 months pregnant. We are trying to get him a room before making him go to the hospital so that he is comfortable when he gets there. He definitely needs to be drained.

    I hate seeing how uncomfortable he is now. He is so swollen he has a hard time sleeping and flips and flops back and forth and moves from one room to the next trying to find some comfort.

    Is radiology doing the procedure to drain Tom? I want to make sure my mom and I are going about the process so that my dad has the best experience possible or at least the least painful and aggravating.

    Best wishes to you and Tom.

    #34639
    marions
    Moderator

    Margaret……has Tom been given diuretics? Also, keeping his feet elevated might also help, as reducing the sodium intake. I am thinking of you and sending all my best wishes your way.
    Marion

    #34638
    mlepp0416
    Participant

    Tom goes in tomorrow morning to get the fluid drained off his belly. Today his thighs and his feet are huge….he has gained over 15 pounds and it’s all fluid. I know we want him to gain weight but not like this…..I find it hard to believe that while he was inpatient for 4 1/2 days they did not even address the ascites issue at all even though we repeatedly questioned it

    I made him call is onc this am with our concerns….his feet are so big that he cannot even get shoes on!

    Calgon take me away!

    Margaret

    #34637
    marions
    Moderator

    I agree. I believe that patients feel too vulnerable and therefore, are too afraid to speak up. Granted, some procedures will cause pain however, for those instances pain medication will be given. Many uncomfortable moments can be avoided when the nurse or technician takes a little extra care. My husband received chemotherapy by means of a port and never experienced pain except, for one time when a nurse simply was careless. I immediately addressed it. The following treatments moved along uneventful. An illness should not prevent us from speaking up in fact; it is of utmost importance that we do. It is your right to do so.
    Best wishes,
    Marion

    #34636
    32coupe
    Participant

    Margaret,
    Chuckle indeed. On most of my many recent stays at “Club Swede” (Swedish Medical Center), I insisted on changing my own dressings because they couldn’t seem to get it right – there would be tape in the wrong places so removing the old dressing would tug at the drain tube or the dressing itself would be wrapped in the tube. I considered having a tattoo applied – “CAUTION: Live Patient!” And sometimes when flushing the tube, they would apply too much pressure causing considerable ‘discomfort’ with an appropriate response from me. One nurse was even using a pulsing action – now that was fun…

    As far as a schedule, I was on a 6-8 week schedule and still managed to get sick several times in between – there was no rhyme or reason. OK, enough of my whining.

    Kudos to you for speaking up. Donna also had to get up in their face a few times. Tom is fortunate to have you as his advocate. I continue to pray…

    Grace and Peace,
    bob

    #34635
    darla
    Participant

    Great to hear Margaret and I’m glad those doctor’s are finally listening to you! :) You probably are more capable than the home health care people and know more about this disease than the doc’s and nurses at this point, so I hope they keep listening.

    Thinking of you both and hoping things are going well now that Tom is back on track.

    Love & Hugs,
    Darla

    #34634
    lainy
    Participant

    Man! Perhaps everyone who has taken and passed CC101 should have more attention paid to what they say!

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