Discussion Board Forums General Discussion When it rains…

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  • #45466
    32coupe
    Participant

    Hi Betsy,
    “What’s a girl to do?” indeed. Well you have been doing it. You’re fighting back and not letting it discourage you. You’ve had a bunch to deal with and are doing it with grace. Kudos to you!

    I too am taking ursodiol 3x a day. Have no way of telling if it helps but it sure can’t hurt.

    Still praying…

    bob

    #45465
    betsy
    Participant

    Hey Bob –
    when you say the bile is flowing but slowly do you mean the bile is thick and sludge-like? If yes, do you know about ursodiol? You probably know about this medication but I take it 2-3x/day to keep my bile thin. Let me know what the docs decide to do.

    My surgeon has proposed ablating the piece of liver where the leak is but my IR doc doesn’t want to go that route yet. So, I’m still stuck in a holding pattern. I suppose I could push for surgery but I trust my IR doc (he has taken care of me for a year now) and I hesitate to second-guess his judgement. As you and I know all too well, its never a straight forward procedure when it comes to your liver and there can always be complications. So, what’s a girl to do?

    I am so grateful to be alive – I know how lucky I am to still be here. Thanks for the prayers.

    Betsy

    #45464
    32coupe
    Participant

    Hi Betsy,
    Yes, I had a three day hospital stay first of Nov. for cholangitis while in Phoenix. So… the year long tube procedure seems to have been ineffective for the long term. Bile is flowing but is slowed which allows for an occasional flare up. As for the PSC diagnosis, they are now backing away from that and thinking it is more from radiation damage.

    I am so sorry that your situation hasn’t changed. Is there discussion taking place to find another solution? I’ll continue to pray for a remedy. We need to get those tubes out of your body… it ain’t natural.

    In the meantime, keep giving thanks that you are a survivor.

    God Bless!
    bob

    #45463
    betsy
    Participant

    Hi Bob – cholangitis again? have you had an infection since they removed the tubes this summer? is this because of the possible diagnosis of PSC? I’m disappointed for you but I’m so glad you heeded the warning signs and got yourself to the hospital.
    Hopefully you are going home soon and you will be able to hold baby Chloe.

    I’m still hanging around with 3 drainage bags. I was allowed to try “capping” one bag. After 5 days I became symptomatic and had to go bag to the bag. That was 3 weeks ago and since then the drainage numbers have been too high to try capping again.

    Betsy

    #45462
    32coupe
    Participant

    Thanks again for the congrats and well wishes.

    Betsy – I should get out today. Another episode of cholongitis which I’m sure you too are familiar with. Between bouts, my life is so good I can’t hardly stand it. So the liver wizards here at Swedish are going to meet again and discuss my case to see if there is a non-surgical remedy. As you know, cholongitis can be serious but I have been fortunate so far. Since I haven’t seen any recent posts, things must be OK with you.

    Lisa – I know Stanwood. My son and his family lived there for a few years. Nice town.

    #45461
    jennifers
    Member

    Congratulations Bob – the EXACT same thing happened to Dad when my sister had an emergency c-section last week when he was in the hospital… these things happen when they are meant to :)
    I LOVE the name – absolutely gorgeous. Enjoy Christmas with your beautiful new Granddaughter!! What a blessing!

    Jen

    #45460
    marions
    Moderator

    Bob…Congratulations on the early arrival. What joy these little ones bring to our life! Please, get well soon.
    Best wishes,
    Marion

    #45459
    lisa
    Participant

    Congratulations, Bob! I hope you will be able to see your new granddaughter soon. A baby is such a blessing.

    Sorry to hear you are in the hospital again. I hope you will get better soon. I didn’t know you live in Seattle. I live about 60 miles north of Seattle, in Stanwood.

    #45458
    betsy
    Participant

    congrats Bob on your new granddaughter! I also love the name…beautiful! how are you? are you in the hospital or out?

    Betsy

    #45457
    32coupe
    Participant

    Thanks to all for the congratulations. This is my first grandaughter in twenty years – do you think she may get spoiled a bit?

    Lainy. I think it is a beautiful picture of your “strong but gentle” ‘T’ kissing Chloe Grace and sending her on her way to meet her papa. BTW, I have a theory about that new baby smell that is on every newborn. That is the fragrance of heaven…

    God Bless!
    bob

    #45456
    lainy
    Participant

    CONGRATULATIONS Bob and Donna!! Another Miracle. May I have the audacity to believe that Teddy kissed her goodbye as she came down to you?
    I love the name Chloe Grace. Strong but gentle just like her Grandpa. Because I have had the good fortune to meet you both I can see you going nutso now. ENJOY and get rid of that infection pronto!

    #45455
    andie
    Participant

    Congratulations and what a beautiful name.

    God bless you and your little angel.

    Best wishes

    Andrea

    #45454
    slittle1127
    Member

    No greater blessing than a baby – Congratulations! As always embrace the good and hold tight during the bad. Blessings, Susan

    #45453
    tiapatty
    Member

    Bob,

    Well, you are certainly adept at multitasking! Congratulations, grandpa!

    Patty

    #4466
    32coupe
    Participant

    And boy is it raining here in Seattle today. But that’s not what I’m referring to. Yesterday morning we headed north to Everett to be with one of my closest friends and his family as he underwent liver surgery for cancer. When we left the house, I felt like I had somewhat of a fever but ignored Donna’s suggestion that I see the doctor. I was determined to be with my friend. Well, within an hour or two, I began to have all of the familiar symptoms of infection and knew that I needed to get into the hospital myself, and soon. So my ever patient wife drove me back to Seattle and checked me into Swedish through ER. They barely had me hooked up to the IV’s when we got a call from my youngest son to tell us that they were admitting his pregnant wife and were going to induce her (a week early). And for the first time in my journey, I was mad at God. Why today God? Monday or Tuesday – but today – really? So I was sitting at Swedish while my new grandaughter (Chloe Grace) came into the world at UW Med Ctr without my greeting. I’ve quickly forgiven God (He was sweating that one out) because he sent us an angel today. God is good!

    May God bless you all,
    bob

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