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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 10
I really hate to hear all of this. My prayers are going out to you and your family. You are not too far from me and I went through a similar situation 2 years ago with my husband. Thankfully we caught his in time. If you ever need someone to talk with just call 540-616-6960. I have been in your shoes with little children too. We live in Pulaski. I will help you through as much as I can or just listen if need be.
I haven't got to get on here in a while because I had to let go of the internet. I was the only one working and couldn't afford it. My husband was diagnosed with CC in July 2010. He had a liver resection followed by 5 weeks of chemotherapy and radiation. I am very happy to report he has been cancer free for almost 2 years now. He still goes to his regular checkups with the oncologist but they say he is doing great. I want to thank everyone for the prayers while we were going through this. It meant alot to have people to talk to that understood. We are now a stronger couple because of this. I am happy to have my internet back so now I can stay on here more often. You guys are great. I wouldn't have made it through without your advice and kind words. Words will never be able to express my grattitude.
Just got off the phone with my husband. The doctor came in and told him when they opened him up to do the surgery he had so much infection in him that he was lucky he didn't die. If our primary doctor had not switched his antibiotic then he probably would have.
On a good note however he may be coming home either tomorrow or Friday. He has to come home with a JP tube but I am OK with that. That really is easy to take care of not to mention it is not forever. It is only to drain all of the fluid off of him and the infection. Once all of that is over it will be removed and he will finally be tube free. We still have not got the final pathology reports back but the preliminary showed negative margins. Keeping our fingers crossed on that one. He got to eat solid food today and is tolerating that well. He is walking around so much now that they are telling him to slow down before he hurts himself. He said he actually feels good. He is in some pain but as long as he stays on top of it and takes the medicine like he should he can work with it. They took the pain pump away from him. He had quit using it. He is now taking medicine orally.
This is twice now since he got diagnosed that I almost lost my husband because the doctors didn't catch something. These doctors knew he had an infection and just kept changing his tubes hoping that would help it. All it did was aggravated it more. I am so thankful for our family doctor because he has actually saved my husband's life twice now.
As far as his attitude it is getting better. I know he has a long road ahead of him but if he will keep the good attitude then I know he can make it through anything. I just hope we can make it.
Thank You everyone for the great advice. I am not at the hospital with him because I had to come home and go to class. If I miss I don't get a paycheck and I am our only income right now. He is actually doing better since my last post. He told me Sunday night that he is giving up and I told him when I got home on Monday I was going to take a picture of the two little boys he is giving up on and send it to him. His whole attitude changed Monday morning. He is pushing himself (still within his limits) so he can come home healthy. He actually got to start eating today and the doctor said he could probably come home in a couple of days. I hope he sticks with it. He seems to be doing a whole lot better without me there. That kinda hurts some but the main thing is he is getting better. The nurses have already talked to him about a social worker and I think one is coming in today. I hope he gets the help he needs. He seems to be getting a positive attitude now. I just wish he would let me vent my emotions too. I am very glad I have found you guys because it has helped me more than you will ever know. Just to find people going through the same thing you are.
I am very sorry to hear about that. Your family is in my thoughts and prayers.
My husband is getting very lazy and feeling sorry for himself. I am trying to motivate him to get up and work the soreness out so he can start to heal but he is thinking that the world owes him a favor. I am trying to push him and he keeps jumping on me to the point I don't know how much more I can take. He is relying on pain meds and staying in the bed instead of walking. The doctors are trying to get him up and make him walk but he just won't do it. The surgery was a success but he has given up and I don't really know what to do. We have two little kids who are missing their daddy and he is not even trying. I have to leave the hospital tomorrow because I have school and my children are crying wanting me. I don't know what else to do. His mom and brother will be here with him but they will not push him. They just baby him and let him lay in the bed. I have tolerated all of the verbal abuse from him during all of this telling myself that he was just scared. I don't know how much more I can take. I am an emotional wreck. He will not even let me express how I feel. He tells me that I am being selfish. I could really use some advice.
My husband had the right lobe of his liver and part of the left lobe removed today. He came through surgery great. He is in some pain right now. He is not too happy that he has a gastric tube but he will get over it. He doesn't understand he needs it right now. It will probably be removed tomorrow. He was in recovery for about 3 hours because his heart rate was too high but after they let me come back there with him he started to settle down. He is resting good right now. The best news of all is the preliminary results show a negative margin. We will know for sure Tuesday or Wednesday when the final results come in. The doctor is almost certain he got it all. I am keeping my fingers crossed.
I want to thank everyone for all of the prayers and well wishes for today. You guys have made things alot easier for me to deal with this.
Sorry I haven't been able to post lately. I have been very busy taking care of my husband and I am also a full time student. We have been through alot of ups and downs. He had is portal vein embolization on September 17th. He came through that great. He has also been having alot of infections. I have now learned how to take care of a pic line at home. I was giving him IV antibiotics every 6 hours. He has came through this like a trooper. We went to see the doctor Friday to see if the left lobe of his liver has grown. They said it is more than enough to sustain life so they scheduled the surgery for November 4th. The doctor is very optimistic that he will not even need chemo after the surgery. He thinks where the tumor is located he will be able to get it all. We will know for sure after surgery is complete. It has been one heck of a ride but now we finally see the light at the end of the tunnel. The doctor said he should really be ok after the surgery and there is a 75-80% chance that the tumor will not reoccur.
I would like to thank everyone for your support during all of this. I may not have been able to post but I have gotten on here and read. Everyone has given me the strength I need to help him through this. Our kids are so excited that now daddy may be able to get in the floor and play with them.
My husband went for a second opinion on Thursday about exactly what to do. We live in VA and when he was first diagnosed we were sent to NC to the Baptist Hospital. I had heard good things about this hospital, however our time down there was not so good. The doctor acted like my husband was only more money to him and was not very compassionate. He would not answer any questions we asked him. He did not have a good bedside manner. Since he was jaundice he had the biliary stents put in. The tumor is located at the confluence of the right and left bile ducts so he had to have two stents. The tumor is only 1.5 cm in size so that is good. When they put the stents in the knicked the bile duct and did not tell us. A week later I am rushing him back to the hospital in kidney failure because of the infection that had set up. The doctor in the ER told me if I had waited one more day he would have died. Thank god the tube started showing signs of infection. He spent a week in the hospital. They put bigger stents in while he was there and capped them off to the outside so he would drain inside. He came home feeling alot better. We talked about the doctor and how he did not make us feel really comfortable but instead of doing anything we scheduled a liver resection surgery. He ended up getting an earache and went to see our family doctor and something didn't sit right with him about all of it so he sent us to UVA to get a second opinion. He went to UVA on Thursday and the doctors are so nice up there. I couldn't be with him because I am a full time student so the doctor called me himself so I would know everything going on. The cancer has not spread anywhere. It is confined to the bile duct. On Friday September 17th my husband will have surgery at UVA to cut off the blood supply to the right lobe of his liver to make the left lobe engorge and grow. About 6 weeks after that they will do the liver resection. He prefers not to do the transplant because he is young and will be at higher risk for diabetes and so forth. Not to mention the medication he will be on the rest of his life.
The first thing the doctor did was a biopsy of the lymph nodes around the tumor and then he ran a camera down his throat to look at the tumor to make sure he could do the surgery.
All in all we were told if we would have went through with the original surgery I probably would have lost my husband because there was not enough of the left lobe of his liver to function.
I will let everyone know how the surgery goes on Friday.
My husband is 35 years old and he was diagnosed a month ago with cholangiocarcinoma. He went for a second opinion today and while the doctor said it is cancer the good news it has not spread anywhere. He is a candidate for surgery. We will schedule it tomorrow. I was just wondering from the people who are dealing with this...How do you handle it? He is pushing me away and I don't know how to help him. I want to be there for him but I don't know really what to do. We have two young children and I want him around to see them grow up. I would appreciate any suggestions.
Posts found: 10
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