Catheter installed but bilirubin keeps rising
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Michael: Tom had a left resection in 2008 and they took out about 70% of his liver, the entire left lobe and part of the right lobe. I don’t think they would even consider him for this type of stenting as there is no ‘junction’ left anymore. And with his overall health, he most likely would not be able to survive any type of major surgery. He is 6ft and weighs 112 lbs or so. Just not a good candidate for any more invasive surgery.
They have even tried to get past the tumor by one doctor going down the inside of his body (ERCP) and the other doctor accessing the live from the outside of the body….their wires came within milimeters of each other but with the tumor between the wires. They suspect that the bile duct that has the tumor has been destroyed by the tumor or that the radiation could have destroyed it as well. So I believe that there is no way around having that dratted external drain bag. Mayo clinic has also tried twice to get an internal stent in, and my thought is that if the Mayo clinic doctors cannot get the stent in then on one can.
Although the external drain is a pain in the butt, we’re OK with it as it is keeping his bilirubin level manageable.
Thanks for the advice though!
Hugs,
MargaretMargaret, If Tom is up to it you might want to get an evaluation from Dr. Bulent Arslan at Moffitt Cancer Center in Tampa. I didn’t think it would be possible to join the left and right stents together at the junction into the main duct, but he had done it successfully three times and those patients have been clear over a year. We talked about it for a while, there is of course a chance that the joint could be susceptible to infection, but I would rather treat infections occasionally than manage the external tubes daily. Not all is internal yet, there are tiny tubes still in until we can confirm that all is well, and thanks to the infection I’ve got a PICC line on my arm which is probably permanent unless I start chemo and need a port.
Thank you everyone for the cheering words. It is indeed good to be home!
MichaelHi Michael,
Thats great that you are getting home. Home is much better than the hospital and I know you will love getting home! Also, thats great that you got the internal stents inserted and I am sure that you will start to feel a lot better real soon.
Best wishes,
Gavin
Wow ! Michael that is just AWESOME news. I know how much Tom would love to ‘loose’ his external tube and bag, but they have tried about 7 times to get a stent internalized, and Mayo Clinic has tried twice – all attempts were not successful
so we just continue on with the external drain tube. He will have that for the remainder of his life – unless by some miracle, the tumor simply gets reabsorbed into his body and allows the doc who does the tube exchanges to get his wire past the tumor. (He checks every time) The doc would also love to get an internal stent in.I’m so happy for you because I know what a pain in the behind dealing with an external drain tube can be!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Michael……the shunts should eliminate tons of problems for you. Great news. Home is awaiting. Take care and please, stay in touch.
All my best wishes,
MarionWELCOME HOME!!!! Goodbye infections! Hello internal tubes!! So long external tubes. Its a good news day!!!!
Well I decided to internalize the tubes. We put in two steel/teflon shunts in the left and right ducts, joined at the main branch through the magic of Dr. Arslan. This should keep the tumor from closing the ducts, at least for a year or two. We’ll deal with figuring out how to replace them when we cross that bridge. Another week with two #5 access tubes, then no more external tubes!
Except for the PICC line, which is going to be around for a while. Just as well because I need to take IV antibiotics at home for four weeks. Stupid bacterial infection. The PICC line is kinda cool, though. I love technology.
Going home today! Ten days in hospital is ten days too much.Michael, I’m so sorry, I just realized that I called you ‘Adam’ on my last post…must have been tired with all that is happening here on this end! I hope they find out quickly what the issue is with those drains, cause that should not be happening!
Please keep us all posted!
Margaret
Thanks Margaret,
The colored liquids appear in both the left duct bag and the right. The left catheter is larger and older, the right catheter is only a few days installed and still flowing slowly. So liquids appeared first and primarily in the left bag. When the left bag was lifted above the shoulder, liquids flowed freely into the right bag. Tests so far have not found a fistula or other likely path such as a mis-placed catheter.
Thank you so much for your posts and concern!
MichaelAdam: Biliruibin is actually measured by the 1,000’s so when they say 24 it’s really 24,000 and when they say 3 it’s really 3,000. Either way is correct.
From your post regarding the change of color after ingesting certain foods it sounds as if whatever you are ingesting is going into your liver and coming out of the bag…but don’t you have two external drain bags? Is one in the liver and the other ‘not’ in the liver?
If so which bag is it that has the strange colors? If it’s not the one in the liver it could be that you have some type of stomach or intestional ‘leak’ or ‘rupture’ – I know that Tom’s doc’s are always concerned about watching for ‘food particles’ in his drain bag and since he only has one now and it’s in the liver we have never had an issue such as that and we did worry about that issue when he had the 2nd drain tube that was outside the liver.
Yes, the Tegaderm film is expensive but Tom is a Veteran so we have been lucky in that the Veteran’s clinic sends us all we need.
Hugs and I hope they figure it out soon!
Margaret
walkingthepath…..the CT scan should provide the answer to this. You know there is always something new on this site. We have had blockages (for various reasons) preventing food from passing through the digestive track but, I don’t recall anyone posting on your problem. Hopefully this is sorted out really soon.
Hang in there. You appear to be in good hands.
All my best wishes,
MarionMarion, Yes the team here has treated over 200 CC patients. The problem with liquids and solids is that there is obviously a direct route from the digestive tract into the bile ducts. Anything I eat or drink has a high chance of contaminating the liver. Until we find out what that route is, a regular diet is unlikely.
Walking the Path, OK, by now you know I cannot resist your post about your bag turning red. Here we go…..you give new meaning to the term, “you are what you eat”. With jokes aside, I am wishing for you to get things resolved and to get the heck home! We will be awaiting your scan results.
walkingthepass…appears that with liquids the drainage is working just fine; now if you could just eat some of your favorite food! The scan results should show a clearer picture as to what is preventing you from digesting solids. I forgot to ask you whether your physician has ever treated a Cholangiocarcinoma patient?
Crossing my fingers for a good CT report.
All my best wishes,
MarionMargaret, Great post and thank you for all the information. I’m confused by the bilirubin numbers you gave in the tens of thousands. Are we using a different scale? I love tegaderm, too. It is pricey, but worth it. Your bandage change instructions are pretty close to how we do it, except the doctor specifically said not to flush and didn’t give us a syringe. The medical stores won’t give us one without a prescription. I will definitely have a talk with my doctor about that. Thank you again! Everyone on this site is so helpful!
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