Discussion Board Forums Good News / What’s Working tubeless in seattle?

Viewing 15 posts - 46 through 60 (of 60 total)
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  • #41109
    32coupe
    Participant

    Betsy,
    I was fortunate to have no leak issues so my experience was different – thank you God. I’m glad they believe they can solve this for you. I’ll be praying Friday for the doctors and for you for a really good outcome. Be sure to let us know how things work…

    As for me, I remain ‘tube’ free with no symptoms and I am gaining strength and stamina daily. Though I am feeling great, they now believe I may have PSC as a result of months of infections. They are watching it with monthly blood work. Thanks for asking…

    Grace and Peace to you,
    bob

    #41108
    betsy
    Participant

    thanks Mary – I’ll let you know how it all turns out.

    Betsy

    #41107
    marylloyd
    Participant

    Wow, Betsy. They have resorted to trying to glue you back together?! At least they haven’t suggested using our favorite fix-all, duck tape!! Ha! Seriously, I really hope they can figure out what’s going on and do something about it. You’ve suffered with this way too long! Best wishes for a very successful procedure! Take care, Mary

    #41106
    betsy
    Participant

    Hi Bob,
    My IR doc has scheduled an MRCP for me this Friday. Its going to be a 3 hour test – never had this done before but from what I’ve read, its just like getting an MRI. After this test, he is hoping to be able to see where and what is causing my bile duct leak. The next step is to use “glue” to seal the leak. This will be done under general anesthesia. Any experience with these procedures?

    Hope you are doing well without your tubes.

    Betsy

    #41105
    32coupe
    Participant

    Gaby,
    I’m sorry but the “clinical trial” was for my specific case. It just amounted to a test of the ducts in the liver to see if they would drain on their own after being ‘strectched’ for many months. I pray for God’s best for your father…

    Grace and Peace,

    bob

    #41104
    briola24
    Participant

    HI Bob, do you know if they’re doing those “clinical trials” in California. My Dad also has stents attached to outside drainage bags. Yesterday they tried to internalize one of them to connect it to the intestine, but were not able to. The cancer is still blocking and they wanted to go through the previous tube they were using to expand the duct. Sorry, I need to look up all the technical terms, its a lot and then trying to translate to Spanish for my Dad throws me off.
    Gaby

    #41103
    linda-z
    Participant

    Bob,

    It’s wonderful to hear how things do work. Don’t ever think things are too trivial to mention. Look how you may have helped Betsy. Keep the good news coming. And it’s also so good that you found this website isn’t it?

    Continued best of everything,

    Linda

    #41102
    32coupe
    Participant

    Hi Betsy,
    So… Tuesday per schedule, I had the small tube removed after a dye test still showing good bile flow. Actually, it was sort of anti-climactic. I am now tubeless and waiting to see if we can get a long term good result. In the meantime, I am being prescibed a bile thinning drug to help the flow of bile through ducts which have been narrowed, probably due to the many sepsis and cholangitis episodes.

    I keep myself from becoming “tired of it all” by recognizing that I am so blessed to be a survivor. It could be so much worse. In my eyes, I am one of the fortunate ones. In the book of Psalms it says “It is a good thing to give thanks to the Lord” so I often begin my day considering all I am thankful for. I like to tell people that I have lived a “charmed life”. So it isn’t will that keeps me out of slumps, it’s expressed gratitude to a loving God.

    May God continue to bless you and give you hope.

    bob

    #41101
    betsy
    Participant

    Hi Bob,

    I had so many questions to ask you but they’ve been answered by reading your posts. I am going through everything you’ve gone through and I’ve followed many of the same steps you’ve taken. I hope your appointment this week goes well.

    One thing that really resonated with me was how, in the beginning, you followed doctors orders and everything went well. But then along came these bile duct issues and following doctors orders wasn’t always the best plan. I’ve tried so hard to be informed and understand what is going on with me – I’ve gotten second and third opinions – but it is such a complicated issue and there are so many knots to tease apart – and often times, the information is too technical for me to understand. I am so incredibly tired of it all. I just can’t summon the will to get out of this slump I’m in.

    My IR doc said there are so few patients out there like me, and, like you, its amazing I’ve survived the septic episodes not to mention remaining cancer-free. It gives me hope hearing your story. Please continue to post so I know how you are doing.

    betsy

    #41100
    32coupe
    Participant

    Hi Betsy,
    The procedures have been at Swedish Medical Center in Seattle. Most recently I’ve been dealing with Dr. Andrews. Hope that helps and hope you can get free from the tube…

    bob

    #41099
    lainy
    Participant

    Hi Bob, and for people who don’t know we have actuallmet and had dinner with our Donna & Teddy. We are so very happy for you and don’t you ever apologize for your great news. Looking forward to seeing you on your return to Phoenix.
    Stay well and keep up the good news. Love to Donna.

    #41098
    betsy
    Participant

    Hi Bob,

    I’m so glad to hear you are doing well. Would you mind sharing the name of your IR doc as well as what hospital he works in. I’ve had bile duct issues and I also have stents attached to external drainage bags…..I’m going on 8 months now.

    Thanks.

    Betsy

    #41097
    marions
    Moderator

    Bob….a long awaited positive result with great drainage, yellow urine, a duct resurrected, makes for a happy patient. Wonderful. I am thrilled to hear it.
    Just love good news,
    Best wishes,
    Marion

    #41096
    devoncat
    Participant

    WOW. Sounds so complex. I am very happy for you Bob. One more step to normalcy.

    Kris

    #3937
    32coupe
    Participant

    I wasn’t sure I was going to post this at first – my issues seem so trivial compared to most of the postings here but…here goes.

    About three years ago, I began having symptoms – severe chills, high fevers, dark urine – indicating something going on with my liver. They would eventually clear up on their own. Of course a bunch of tests were done with the fear being “recurrence”. In Sept., it came to a head when I was hospitalized with a severe infection. Turned out to be blockage of what was left of the duct leading from the left lobe of the liver to the jejunum probably caused by radiation treatment. Unable to place a stent via ERCP because of my altered anatomy a stent was placed at IR with a capped off external drain if needed. The initial plan was for this to be in place “4-6 weeks” at which time it would be removed and that “should solve the infection issues”. After some research on the part of one of the IR docs, it was decided that the solution was to gradually stretch the duct opening over time with a balloon procedure and incrimentally enlarge the diameter of the stent and then allow 6 months to a year for the duct to form over the stent. The initial step of the “clinical trial” ,where they remove the stent up from the intestine just inside the liver, was going to be in early July, then late July, then early Aug. Finally, Monday I went in for the start of the “clinical trial”. They removed the enlarged tube and replaced it with a very small tube such as is used in heart catheters. This tube was placed just into the liver to maintain the track in the event the larger tube would need to be replaced and also for dye tests to see how the duct was doing on it’s own. Tues. morning I went in for a dye test and I watched the screen as the tech shot in the dye. It ran directly into the intestine!! It was a beautiful thing!! Even the IR doc was shouting. This is what we were all about the last eleven months. Over the last several days, my urine is now yellow for the first time in many months (I love this site – I can come here and talk about my urine, the nature of my most recent stool…). Now…I go in next Tues. for a follow up dye test and if there are no surprises, they will remove the tube, let the hole heal up and see if this works long term.

    BTW, had I not had this infection cycle episode, I would not have found this website and you wonderful folks. God uses everything that comes into our lives…

    Grace and Peace-
    bob

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