Topic: tubeless in seattle?

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

Re: tubeless in seattle?

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

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: tubeless in seattle?

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

Re: tubeless in seattle?

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

Re: tubeless in seattle?

thanks Mary - I'll let you know how it all turns out.

Betsy

Re: tubeless in seattle?

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

Re: tubeless in seattle?

Hi Bob,
Can I ask how often you went in for tube changes?  I've been going every 4 weeks. 


Betsy

Re: tubeless in seattle?

Hi Betsy,
I was going in every six to eight weeks. I could usually know when we were getting close because when I flushed the tube I would experience pressure and occasionaly discomfort indicating that it was clogging. Do you experience occasional infections between tube changes? I had plenty - and often when they would change out the tube I would be sick a day or two after from stirring up bacteria.

I was looking for the results of Friday's procedure. Did you post it and I missed it? Did they find and fix the leak?

Grace and Peace,
bob

Re: tubeless in seattle?

Hi Bob,

Yes I have had many infections and I also feel sick for 1-2 days after each tube change.  My doctor also gives me demarol (sp?) if needed, and sometimes a bag of fluids.   I haven't had the discomfort you describe that happens right around the time you had your tubes changed.  But then again, I've been going every 4 weeks.  I usually have issues with not being able to flush. 

I didn't post results of my MRI yet.  Thanks for asking.  My doc says the MRI looks o.k. and there were no leaks on the delayed images.  I haven't spoken with him yet.  I'm not sure what the next step will be because I'm still draining 30cc/day from a drain that isn't leaking.  I'll let you know.

Betsy

p.s.  every time I post to you its under the "tubeless in seattle" thread....always makes me laugh!  sleepless in seattle was one of my favorite movies.

Re: tubeless in seattle?

Hi Bob,
  I'm just curious- have your CA19 tumor markers increased any degree the past few months during all of these infections and inflammation? My husband's seem to jump drastically every time he has an infection or a procedure done and they never come back down again. They are up over 3500 now. I'm not really worried about the cancer being back- they see no sign of it at all and the markers just started jumping skyward about the time they started stretching and biopsing his ducts every couple of months. I keep hoping they can just leave him alone for awhile and see if he gets better but that doesn't seem to be in the cards. He has 2 stents now that will have to be removed in a few weeks. I'm beginning to think he may be better off with an external drain like you had for awhile. If they can't get rid of these abcesses with stents then they need to do something from the outside so they don't have to keep doing all of these ERCP's. It seems like all they do is cause more infection and inflammation- a vicious cycle as you know. I'm glad you found this site- you are an inspiration to all of us.
                                     Take care, Mary

Re: tubeless in seattle?

Hi Mary,
First, I want to say how fortunate Tom is to have you as such an aggressive advocate. In the book of Genesis, before He created Eve, God declared "It is not good that man should be alone" -  my response is: "Well, duh. You didn't have to be God to figure that one out". Men would be in deep 'yogurt' without women. Kudos to you!

I've only just recently had CA-19 tests and they did seem to elevate due to procedures and infections - but not nearly as high as Toms. However, they were thought by the docs to be insignificant. As far as the ERCPs being an issue, IR procedures have their own set of gremlins. I'd take an ERCP over an IR procedure. I'll be praying that indeed Tom can be free of the stents in a few weeks. Let us know and we'll have a party... BYOBB (bring your own bile bag).

Grace and Peace,
bob

Re: tubeless in seattle?

Hi Bob,
  I can be a pain- he always says that when they ask him if he has any pain- none except for me! Ha! I don't take it personally! He knows he'd be up you know what creek without me. We've been a team for a long time. Anyway, I know the external drains are awful- he had several early on and it really was the only time he had discomfort. I just hope this time they've managed to drain the abscess that's caused all this grief the past few months. I've been researching supplements that can help reverse liver disease. I started him on Alpha Lipoic acid a few months ago but couldn't really remember why. Yesterday I read how it can really help with liver disease, cirrhosis, hepatitis etc so I am upping his dose of that a little to what was recommended. I don't know if any of this really works but he seems to get better and surprise the Docs quite often.
   As far as the bile drinking party - I don't think so. I read Valjees post about drinking that and instant nausea set in. I can barely get Tom to drink carrot juice occasionally let alone that. Really gross! Take care, Bob!! Mary

Re: tubeless in seattle?

Hi Mary,
How did you find out about Alpha Lipoic acid?  I always want to try supplements but don't know what's safe and what's not?

Hi Bob,
Did you work while you had your stents and bags?  I have so much time on my hands but feel I can't take on much of a commitment. 

So I guess the next step for me is another cholangiogram and an attempt to, once more, find the leak.  I'm not going in for that for another 4 weeks!  Seems like an eternity.   I'm trying hard to squelch the little nugget of panic that is taking place in my head.  How much longer can I walk around like this?

How are you feeling?  Any more news on the diagnosis of PSC?

Bets

Re: tubeless in seattle?

Hi Betsy,
I feel so bad for you. Four more weeks would feel like an eternity. Your situation is what really makes me worry every time they go in and poke and scrape Tom. How long before he starts leaking. It's very scary and a miserable situation for you. I have always done a lot of research on supplements and Tom has been taking them from the beginning. I really believe they have helped him a lot, probably some more than others. I concentrated on things that helped prevent cancer more at the beginning but now I've been looking more at things they recommend for liver disease and that's where the alpha lipoic acid fits in. You just have to decide whether you want to try them or not- since you're not doing chemo there shouldn't be any reason to not try them. Just do some research here about what we've all used and then decide yourself I guess. I hope things get better for you soon. With winter approaching it probably makes you feel even more down. Cleveland in the winter can be tough! Take care,Mary

Re: tubeless in seattle?

Hi Betsy,
I retired around the time of my 'issues' so, no I didn't work. But I was having trouble just doing some of the puttering I enjoy doing on my boat as by the time I began feeling better after one of the sepsis episodes, I'd get sick again. Plus, my daughter and my youngest son nagged me about not taking on too much - they feared fatigue would lead to another infection - which of course was unrelated. As for now, I'm feeling really good. God is good! I'm gaining stamina each day. PSC? We're still doing monthly liver scans and watching...

I can't imagine how frustrating this peristent leak must be to you. I continue to pray for a solution. As far as "how much longer..." can you do this? Without trivializing your situation, as long as you need to. Remember, you are you of the fortunate ones.

God Bless!!

bob

Re: tubeless in seattle?

Hi Bob,
   It seems like you and Tom are facing the same issues at present. I was wondering what scans do they do monthly and what else are they doing for you? Any meds etc? We are going to a new Doc on Weds. and I would like to compare what he suggests and what your Docs are doing. Our present Docs aren't really suggesting anything right now except to keep putting out the fires as they occur and hope for a liver transplant eventually. That really isn't something Tom wants to deal with, in fact he says he probably won't do it. Thanks for any info. I think it's good to sound informed when dealing with new Drs.     Mary