Biliary Catheter Leakage/ bile + blood
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When Teddy had his stent exchanges he ALWAYS had like a twilight sleep. I would never have it done without that help. The patients who were totally awake on here were very few. I feel that they are enduring enough without taking on anything extra. I am wondering at this point if you have thought of going elsewhere or have asked for different people to do the stenting. Something does not sound right that after 2 years they have become problematic. Just wondering……
Thanks for for your input everyone, the three times we have been to the IR dept the radiologist said that the tubes were moved and hence had to be repositioned. They worked fine for two days and then we were back to the IR. She’s going to get her port disconnected and told me this morning there was about an inch of blood in the middle catather that went to the bag. I don’t know how this can be normal. We were doing well with the catathers for two years and now all this trouble.
It upsets me taking her back there under anesthia to get the tubes changed so frequently. Sometimes the leaking stops and some days it just leaks out to the bag and skin. The amount of money I’ve spent on gauze and tape is becoming a joke. It know escalates when chemo is going on so I’m going to monitor and eye how she is this weekend and then go from there. The right size is the biggest -14 French and the middle is 12. The radiologist did advise me that the last resort would be a 16french for the right side but it’s been known to move very easily hence the patient needs to return quiet frequently to have it replaced.
Another issue is that she needs anesthesia, I have read here some patients tolerate the exchange with just a little discomfort and don’t require anesthesia. Sometimes it takes a day or two for them to set up an appt since they need to get anesthesia on board.
Sorry for the long rant.
Hi,
I was searching the site for information on smell of bile that I’ve been noticing on my mom recently, and I came across your post. As a daughter myself, I completely empathize with what you’ve been going through. Seeing my mom in so much pain has been one of the hardest things I’ve experienced, and it’s not something I would wish on anyone. I’m so sorry for the hard time you’ve been having. I’ve been dealing with taking care of my mom and the financial aspect of her illness as well. I know how frustrating and difficult all of it can feel. Please know you are not alone. I am sending so much positive and loving thoughts your way right now.
My mom had a catheter for a day and a half when her first stent surgery was unsuccessful. The first few bags were almost all blood (or so it seemed to me). The nurses and docs said that was normal. But both my mom and I were freaked out by the sight of it, and I understand how disconcerting it might be for your mom. I hope you find answers soon, and I hope your mom find relief soon.
Caroline
I’m glad you got the insurance issues under control. There is enough going on without having to worry about that, too. I think Lainy had a good thought there and is something that should be looked into. I have no answers on the blood issue either, but hopefully someone else will come by with some ideas. As for the pain, that is definitely something that needs to be addressed. As Lainy said and I totally agree, no one needs to be in pain. Hoping things can be resolved quickly and mom will be feeling better soon.
Love & Hugs,
DarlaI am so very sorry to hear about Mom’s trouble with pain and bleeding. Sorry I can’t help on the blood issue but I can tell you that I live by the motto, “No patient needs to be in pain with all the Meds there are today”. That is not acceptable. Has anyone thought that maybe the catheter has dislodged? Like, why was it good for 2 years and now there is pain? Something needs to be done for the pain first. You know me I am going by my gut feelings here. I am so glad you got the insurance problem solved. Teddy had Cigna and when the ____ first hit the fan and we were out of town and had no problems with Cigna. I hope to hear quickly that the pain is under control. Please let us know what is happening and wishing Mom the very best.
Hi everyone,
Hope you are all well. It’s been a while since I last posted. Good news is that last Saturday I was finally able to get insurance up and running through Cigna. It’s been a long long battle and I’ve promised to shoot myself if I ever have to deal with insurance again
The bad news is my mom has been in and out of the hospital 3 times in the past two weeks due to her catheter issues. The right side has been giving her issues now. It was working fine for the past two years. She has them open to a bag but they seem to still leak through her skin. The radiologist advised me that the small amount of blood in the bag could be due to the tumor being irritated this much but today she has been complaining of seeing a tad bit more than normal. She doesn’t have a fever and has brought the chemo pump home.
The past 7 weeks have been really hard for me, seeing her giving up hope and also watching her in pain and let’s not forget the hoopla with the insurance.
My question to you all is has anyone ever had blood leak into the bag? Per Dr. Javle “in the absence of chemo this is expected”. I hate seeing her in pain and in discomfort. Any advice would be appreciated!!
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