Hello everyone. I have not been on the message board for a while now. My Dad (age 64) was diagnosed with cholangiocarcinoma in Nov '05 and died in March '06. I am writing this because I really miss my Dad and want to share my thoughts on our experience. I feel that I/we made some mistakes and perhaps something I've experienced can help someone in some way.
My father was an energetic, otherwise healthy man who had a physical just one or two months prior to beginning of his symptoms and was given a clean bill of health. The only thing that his general practictioner said was to drink more water, because his kidney "levels" (I can't remember the term) were high, which seemed odd, since he always drank a lot of water daily. His liver was functioning at a normal level. Anyway, he didn't think much of it at the time. In November of '05, he started getting very sharp pains in the area above his liver, to the point that he could only take shallow breaths. To make a long story short, an x-ray showed a large tumor (11 cm) in his liver and eventually they found that it originated from his bile ducts. My Dad was a fighter and decided to have radiofrequency ablation, although the surgeon said that his cancer was terminal. They were going to try to perform the radioactive sphere treatment, if he could handle it (which he never could). My Dad was very stubborn and only went for one opinion (with his wife). He was private with health matters (he didn't was his children to worry), so he didn't want us to go with him to appointments. He told me that he felt comfortable with his doctor and said that I needed to respect the fact that he was going for one opinion initially and then he would go from there (after the surgery). He was in terrible pain and I think that he couldn't bear getting out of bed and making the trips. My point is that once he had "an aggressive" ablation surgery, everything went down hill. He developed a huge clot in his leg 4 days after the surgery and almost died. ***Please make your love ones get another opinion!*** I believe that my Dad's kidneys were compromised from the onset and the doctors did not respond accordingly. I don't think his body could handle the toxins from the ablation (since his body had to absorb the tissue). I know that many hospitals take a "round table" approach, where different specialists review each case and decide on a treatment. I truly believe that this would have helped. I know he wouldn't have lived forever, but I think he could have lasted longer. ***Also, stay away from THORAZINE, which my Dad was prescribed for hiccups.*** He had very strange hiccups that started around the time the pain started. They were very painful, because of the pressure they put on his abdomen. After he developed the clot in his leg (which was supposedly several inches long), he became bloated and was near death. He was taking a lot of Throrazine, which I later read "should be administered with caution to people with kidney...or liver disease". Once I learned this, I was furious. After they stopped the thorazine and around the same time, gave him albumin for his kidneys, he made a dramatic improvement. Who knows if the thorazine definitely hurt him or if it was just the albumin that helped him, but in my gut I feel that the Thorazine contributed to his decline. What bothered me most is that if the drug isn't supposed to be used on someone with liver disease, why did they do it? ***Please try to keep up on your loved ones treatment, including drugs prescribed. I'm certainly not an expert, but I don't believe that doctors/nurses always get it right. They are human and make mistakes. We need to be there to ask all the right questions. Finally, we had several issues in the hospital, mainly with the quality of care (ex. 1) morphine pump not working after "being fixed" about 4 times - we finally had to physically watch to see that it was or was not moving 2) being told after four days in the hospital that his kidneys were operating at 20% when he was admitted and only then being seen by a renal specialist). I guess this goes back to the point that you should really try to find THE BEST doctor and hospital possible. We all want this, but sometimes we feel so emotionally and physically drained that it's easier to go with the closest doctor or hospital in town, when this may not be the best choice.
Well, I hope that this post isn't too negative, I just felt that I had to get these thoughts off my chest. I know that most of my comments are pretty obvious and logical, but I still wanted to express them...just in case someone is out there who needs some advice. I wish all of you fighting this disease the best of luck. There is hope. Please stay informed and positive! Lean on your family, because they want to help you...they don't need to be protected! I will keep you in my prayers.