fightforlj
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Thank you both Lainy and Marion for your replies as well as your personal phone calls!
We are out of ICU but not out of “trouble”. Bilirubin still elevated at 13.1, infection not clear and found another pocket of fluid collection now on his left lobe of the liver . They are unsure if this is an abscess or just bile collection from narrowed ducts. The pocket is to high to stent with an ERCP but can be reached with a percutaneous drain. Problem is, they are afraid of placing another drain then he may run another risk of infection, bleeding and a pocket to pop up elsewhere. The doctors ask us, where do they stop with poking him and placing drains all over. My brother is growing emotionally tired fast b/c of this continuous problem.
As for the liver dialysis, the chairman of the liver dept came to discusss with us liver dialysis. He reminded us that they are still experimenting with it and has never been used on cancer patients. But he said he will talk to the company and get back to us. But, of course, we can’t do or consider anything until this infection is cleared.
My brother is choosing to go home and hope these “pockets” don’t turn into another abscess. He just wants to go for Christmas, and I understand. After all, he is the one being poked and stuck. We just feel SO frustrated.
The MD Anderson doctor gladly reviewed my brother’s situation with our doctors and MD Anderson had no new ideas.
Please let me know if you all think of anything or anywhere to go! If anyone out there on this website has had similar reoccurring abscess and infection experiences with elevated bilirubin, please let me know of any plan you used that “fixed” it. We just want him to get to chemotherapy!!!!! THANK YOU EVERYONE!!!
Well, I wanted to update the status of my brother. He had the 2nd ERCP and found an abscess that doctors said was too big to heal with IV antibiotics alone. So, despite the risks, they placed a JP drain and are administering IV antibiotics for 4-6 weeks. The JP drain has been successful and is still in him draining well.
We are heading out next week for our first appt with MD Anderson. He has lost some drive/focus with all the complications with surgery and repeats of stents/ERCPs but I think he is back on track again. He has lost about 20lbs and trying to focus on weight gaining and keeping physically strong to get ready for chemo.
My questions to you all…does anyone know of any good nutritional tips for weight gaining? I know I am going to search the site but I wanted to just put my question out there. He is naturally a weight lifter, runner, athletic guy who is used to eating well.
Also, devoncat, or any other “survivor”, would you be willing to email my brother personally and shed some hope for him!??! I mentioned this website to him and he is still a little hesitant to read it. But I told him about some “survivor” titles on these profiles and his eyes light up!!!! He never heard the word “survivor” and “cholangiocarcinoma” in the same sentence. He keeps hearing bad prognoses and death sentence scenarios. He needs hope from someone in his shoes. Help!
I am back again! I am more frustrated today than ever. My brother is in the process of recovering from his right colon resection. Almost two weeks postop, his legs are swelling, his abdomen is still distended, his eyes are yellowing again and his WBC is 25 and bilirubin is back to a 5 (from a 2, needing a lower level for chemo to start). Now they believe the stent placed (about 2 weeks ago) in his common bile duct is infected again. They are doing an ERCP again today to evaluate the stent. Also, we are fighting with MD Anderson to get all our files/papers collected, slides received and an appt set up. They are saying the first appt is Dec 15 which is too far away for me. My brother looks weaker and thinner than ever and I feel like I am just spinning my wheels! Should I take my brother somewhere else to reevaluat the stent, and start chemo. This waiting game is killing me!!! HELP!!!
