PTC/biliary catheter placement
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My husband had a bile duct resection where they were able to get rid of his tumor entirely. Unfortunately, one of the common complications of this surgery is a stricture(narrowing) where the surgeon joins up the two ends of the bile duct. Three months after the surgery, David started itching terribly and having sweats and chills. His Bilirubin went up to 8.1 within two weeks. He was normal prior to that.
It was decided that he needed an internal/external biliary drain put in. . It was explained to him that they would keep changing the catheter increasing the size of it every time. They started off with a #10 and now he has a #14. This is the largest it gets. Hopefully, they can remove it entirely in August and his bile duct will be able to once again work normally.
Problems: The drains either leak or stop draining. He is going in for his 7th one in 4 months tomorrow.
He has a drainage bag we have named Sam. This will be the 7th SAM. Yikes. It is a royal pain, but it did bring down the Bilirubin to 3.9 before it started to go up again. Right now David is very jaundiced and his Bilirubin is over 12; however he feels good! Go figure. He had a PET scan which showed no cancer even though 5 months ago he had tumors in his omentum. He just had an MRCP which also showed no biliary obstruction of any kind. The doctors are baffled.
We are hoping that the Interventional Radiologist, NO TECH, can find out what is wrong.
Dr. Lee says that people move and the drain does not so it can easily be pulled out of position in the small intestine. It is frustrating. It is scary.
David had a liver transplant in 2003 due to PSC so they are super careful with him.
Your husband has problems we have not encountered yet. I wish him all the best. This is a
lousy disease made moreso by the lack of knowledge on how to treat it.
Chemo is not effective even though they push it. Sad. David is on CBD and has been since his surgery when they told us his CC had metastasized to his omentum. Maybe that has gotten rid of the nodules, maybe not. We are cautiously optimistic, but extremely concerned about his high liver function tests.Lee….everything crossed on this end for a quick turn-around of a complicated situation.
Hugs and love,
MarionSO sorry, Lee. Just a thought but since he has had so much trouble with the bile stents I am wondering if the same person is installing them. Perhaps asking for another Tech to do it may help . Teddy NEVER had a problem with his stents and he had them for years plus one was also put in his ureter. No problems. I am sure you both are at the pinnacle of frustration. I am wondering what the ONC has to say about all this. There is no reason to suffer like this!
Thanks KrisV and Gavin!
The PleurX was placed and he has lots of pain on top of what is already going on with his biliary catheter/stent. The pain has been mostly managed by pain meds, but his bilirubin came down initially and now went back up. He has been hospitalized since last Wednesday and is so frustrated about the drainage/stent. He is scheduled for another ERCP. tomorrow I really hope IT WILL WORK THIS TIME!! I PRAY…
Lee
Lee –
I am with you. I really hope that it works for your husband. I know when they first did it for Mark it did help some. He had the option to has his left in and got home but he didn’t want to. He hated it because it hurt so darn bad. Maybe he would have stayed longer if he had but he wouldn’t have been happy about it. It is so hard. I have my fingers and everything crossed for the two of you.KrisV
Hope that all goes well for your husband today Lee, keeping my fingers crossed for this. Hope that this will indeed relieve some of these symptoms and bring him some relief from them all. Please let us know how things go.
My best to you both,
Gavin
Hi KrisV,
Thank you so much for the detail information regarding your husband. I know exactly what you and your husband have gone through and am very sorry for your loss (I read your posts previously and was hoping your husband would pass the 2-year mark and remain cancer free….).
My husband is scheduled for pleurX today and I hope it will help relieve some of his symptoms (shortness of breath, rapid heart beat). We are hoping to go home tomorrow.
Lee
Lee –
My husband’s was only on the Left. The initially did a needle drainage of the effusion to look for cancer cells but found none. He did 10 days of IV antibiotics at home after that. He truly felt fine and other than some breathlessness especially at night. We went back a few days after the antibiotics were done and they found it had the effusion had returned. The next day they went in with a small video camera and biopsied the site which was now a mass then drained the effusion and the the pleuradesis which is the talc in the space to make the pleural stick to the lung. He had a chest tube in for 3 days then out it came. We went home 4 days after the surgery. He was on oxygen now though which was new for him. We did find out if was the return of the cc. And he did unfortunately pass away a few days later.
I will say that his was a very unusual case and VERY surprising to all of his docs. They all said it does not go where it did. My husband also had significant underlying lung issues from previous radiation to his chest as a teen. So there were a lot of other factors in this too.
Lee, please feel free to email me if you wish. I am more than will to help and guide. My email is;
dazoo3563@comcsat.net.Hugs and Love to you both,
KrisVThank you Marion and KrisV! His chest CT showed suspicious nodules (bilateral) although small less than 1cm. The plural effusion is bilateral with significant more on the right side. CT did not mention about abnormal plural and the onc did not say where is the effusion could be resulted from.
KrisV – was your husband’s effusion bilateral or one side?
Lee
Dear Lee, agh! Not want we wanted to hear. Before any new treatment of any kind including when we had to call in Hospice Teddy would always ask the Doc, “What would you tell me to do if I was your Father?” The ONC always gave him a straight answer and it really helped. This is one of the hardest decisions to make but once made, you both will find a less stressful life.
Oh Lee, I am so sorry, I know exactly what you are going through, having done this exact same thing with my husband just two months ago. I wonder is it in his lungs or actually the the pleural lining around his lungs. My husband had it on his pleura after being told it never went there. I think it might be time for a frank discussion about what your husband wants out of life. Does he want to stay in the hospital or does he want to go home for care? Also talk about quality of life versus quantity of life. These are tough decisions to make and I wish you the best as this journey continues.
Please feel free to ask any questions.Hugs,
KrisVLee….so sorry to hear the latest news. The good in palliative care is that they highest level of comfort can, and will be achieved. The reduction of fluid in his lungs already relieved your husband of major discomfort. Pain and all other symptoms can be addressed as well either, in the hospital or in a home setting.
Stay strong, dear Lee, and know that tons of good wishes are heading your way.
Hugs,
MarionThank you all! The results of cytology showed malignant effusion (found adenocarcinoma cells). Now they are trying to decide if they should do a chest tube or Pleurodesis. His albumin is low (2.4) and he had edema. Other liver enzymes are improving. He has lots of pain in abdomen. His onc talked to us yesterday about pain control and palliative care.
Lee
Lee,
Sorry to hear this news about your husband. Will be keeping my fingers crossed for your husband and hope that he continues to improve with the treatment. Please keep us updated on everything.
Hugs,
Gavin
Lee –
So sorry to hear of the change in your husband. It’s hard to deal with stuff like that. I wonder did they do general anesthesia for the placement. My husband just did a local and some pain meds for his placement. I know that plleural effusion can be a result of anesthesia. Sounds like docs have a good handle on it now.
Hugs,
KrisV
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