Discussion Board Forums Introductions! My Husband and Cholangiocarcinoma

Viewing 15 posts - 16 through 30 (of 285 total)
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  • #34633
    mlepp0416
    Participant

    Want a little bit of a chuckle? Before they would release Tom today, they were setting up home health care to have someone come in daily and flush the drain tube and change the bandage….now is a bit late to be concerned about that don’t ya think? Who do they think has been taking care of it for the past 10 months? Maybe a little elf or a munchkin?

    His doc did not come in to see him this am cause they (the hospital?) was waiting on home health (so the nurses said) and when his doc came in at 12:30 his first words were “Please do not throw anything at me”! His doc does not know who ordered home health care because he did not.

    Now they want him to come in every 2 weeks to get a sample of the bile and will watch for infection. If it comes back they will put in a PIC line so that he can get IV Antibotic’s at home rather than to have to be in the hospital for 5 days. FINALLY they are using their heads! And they are also going to get him on a schedule for tube exchanges, something like every 4 – 5 weeks and the tube exchanges will be automatic. This is something I suggested and finally they are listening to me! Go figure eh?

    Well, on that note, I will just say once again, “THANK YOU ALL for all your support and prayers”. I can’t tell you how much this forum has helped me out in the past 10 months.

    Go with God and KEEP KICKIN’ THAT cancer

    Margaret and Tom

    #34632
    gavin
    Moderator

    Hi Margaret,

    Great news! Hoping that the great news continues for Tom.

    Best wishes to you both,

    Gavin

    #34631
    devoncat
    Participant

    So happy for you and Tom.

    Kris

    #34630
    lainy
    Participant

    Margaret, that is the best news to wake up to on a Monday morning. Hope that Tom continues on this path now and so very glad everything turned out so well. Enjoy!

    #34629
    mlepp0416
    Participant

    Tom will be released from the hospital today! He’s 110 percent better! And get this, his alk phosphate level is down to 500! YES, 500, it has not been that low in over 2 years! The ‘on call’ doc was so concerned about his alk phosphate level on Saturday and I asked her it it was 900 and she said ‘yes’ so I told her that 900 was actually GREAT for him since it had been over 1500. Then the blood work on Sunday was 500! So, don’t know why it went down but that is awesome news! His onc is going to be amazed. For whatever reason, Tom appears to be great at dodging those bullets!

    He’s crashed no less than 5 times during his 4 days in the hospital…can’t figure out why they won’t listen to the patient and his main caregiver about how much insulin he really needs! After the 4th time of him crashing then they finally started listening to me. Before I left last night, my final words were “Please do NOT give him insulin tonight!”

    He had a tube exchange yesterday at 5:30 pm because Dr. Dempsey was going to be gone today and that went well however Tom was not a happy camper at having to stay overnight, all he wants to do is come home and I can’t say that I blame him, however, to be on the safe side, they wanted him to have a few more rounds of the antibotic and I understand why they wanted him to stay.

    And it’s amazing what 7 1/2 hours of sleep can do to renew this caregiver. (I stayed at the hospital with him and sleeping on a cot just didn’t cut it for me and not having my bipap with me didn’t help either)

    Go with God and KEEP KICKIN’ THAT cancer.

    Cyber Hugs and Thanks for your prayers!
    Margaret

    #34628
    gavin
    Moderator

    Hi Margaret,

    It is good to hear that they have identified the bacteria in Tom’s bile and lets hope that the antibiotic does it’s job here. And a ton of positive thoughts and good wishes heading your way from over here.

    My best to you and Tom,

    Gavin

    #34627
    andie
    Participant

    Thinking of you both and sending prayers and hugs your way.

    Stay strong

    Much love

    Andrea

    #34626
    marions
    Moderator

    Margaret….I tidal wave of good wishes are heading your way.
    Marion

    #34625
    darla
    Participant

    Margaret,

    You’ve got it. Many prayers coming your way. Hoping for the best for Tom. Don’t forget to take care of you, too.

    Lots of Love & Hugs for you both,
    Darla

    #34624
    mlepp0416
    Participant

    Need some prayers gang….Tom now has Ascites….fluid building up in the abdomen. He looks like he is 6 months pregnant! This came on very quickly and they are monitoring him closely…but I’m heading back to the hospital to be with him….going to be a long night.

    He may need a paracentesis (draining of the fluid) and hopefully he will not need an abdominal external drain but apparently that would be kinder and less painful than having a paracentesis on a regular basis.

    On a more positive note, his white blood count is now down to 14,000 and they have identified the bacteria (which is in the bile) and started him on another antibotic to kill the bacteria. Some strong strain of ‘cillin’….

    Go with God and let’s KEEP KICKIN’ THAT cancer.

    Hugs!
    Margaret

    #34623
    darla
    Participant

    Margaret,

    Glad you got Tom in and things are being taken care of. Hopefully this is just another bump in the road and things will soon be improving.

    Love & Hugs,
    Darla

    #34622
    lainy
    Participant

    Dear Margaret, I am so sorry, I just saw this thread! Teddy had the same thing happen but it was years ago. It was an e-coli infection and they gave him Levaquin (sp). He had lost control of everything. He has yet to loose control of anything in the state we are at now. As for Hospice you just tell the Doctor you are ready and they set it all up and Hospice contacts you lickety split. I sure hope by now Tom is doing much better today.

    #34621
    gavin
    Moderator

    Hi Margaret,

    I am glad to hear that Tom was seen by a doctor, and as you say, he is in the best place for now. Let’s hope that they can find out what the cause of the possible infection is and get something done about it.

    Best wishes to you and Tom,

    Gavin

    #34620
    devoncat
    Participant

    Margaret, glad you got him to the doctor and those where the drugs they gave me when I showed up once at the er with an infection. Took of days to clear up, but it did so lets hope the same for Tom.

    Hang in there and we are all just a mouse click away.

    Kris

    #34619
    marions
    Moderator

    Margaret….I am glad to hear that Tom is being treated and am hoping for a quick result of the tests.
    Best wishes,
    Marion

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