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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: 5
Hi all and again thank you for your support and ongoing prayers to you and yours. I am sorry it has been a while since I have responded. My father's illness escalated and things unfortunately went in a not so good way. His liver completely failed and am sorry to report, began to effect his brain.. My dad quickly disappeared behind a sweet gentle very confused man. I went to spend time with my father and mother nearly daily to help give mom a break and to visit with dad and help where I could. Sadly on the morning of October 31st the angels came and took my father home while he was in my mothers arms. My heart, prayers and support goes out to each and every one of you and if I can be of any assistance.. even just a warm hug or ear to listen I am here for you all.. All my families love prayers and support to you and yours.
Thank you Katie.. I am sorry to hear that your family also has had to experience the bad bedside mannerisms and insurance difficulties.. I wish you and yours lots of love, luck and hope
Thank you all so very much.. I will definitely look into the information you have given me As for the question about his stent, My father initially had a plastic one placed. They waited a couple of days and made the decision to have him go to a larger hospital.. we live in a small timber community between Seattle Washington and Portland Oregon.. so there are some fantastic specialists in either direction of us to help. At the larger hospital they used the ultra sound wand and determined that the plastic stent seemed to be doing its job and was not blocked.. but they found other issues and the doctor referred to it as "the tumors are bursting from the liver" and there was need for them to place a metal stent.. So they placed the metal stent somehow to bridge things... from what I understand they were puzzled because the gall bladder should have been partially tucked by the liver and it appeared in all the scans as though his gall bladder has basically fused itself to his abdominal wall. ... They called a number of specialists in and even brought students in on his case as I am sure it was a learning opportunity and they seem to be a teaching hospital on rare cases.
Thank you again for your kind words and the information you have shared. I am terribly sorry that we are all members of such a awful club of sorts but thankful for the peer interaction and my heart, my prayers, my sympathy and my biggest warmest most supportive hugs go out to all of you.
Thank you so much Lainy,
Per your questions, Yes, he has had a second, third, and even fourth opinion on the matter unfortunately all with the same glum outlook. As far as the home hospice.. I should clarify on this matter.. He is still getting constant current care by a regular physician, a specialist, and a oncologist. Professional home health care nurses also check in on him at least weekly at home. I too am concerned about my mother taking on such a huge responsibility mentally and physically. I know that she loves him with all that she is and she feels as long as she is doing this then she is contributing to helping him in a situation that offers little opportunities. Very true on the liver flukes issue and how many others are being diagnosed without that connection. It begs the question why? and how come there is not more information circulated to help folks? Is there anything that can be done in the form of early screening?
I am glad that there is at least online information such as this for families to locate in their times of need. Thank you again for your warm welcome and support
I am new to this so please forgive me if I am not clear in my words or ramble for far too long. My father was 58 years old on July 4th of this year. A relatively healthy active man who was working full time for a local mill to support himself and my mother. On July 4th a co worker called us during our family picnic to explain that my father was close to collapse. He told us that he had called for the ambulance to check him out. We rushed him to the ER and while there they came to the conclusion that my dad's kidneys were not functioning at 100% and not to worry they would treat him and things would be fine. A few minutes later a second doctor appeared and immediately started off the conversation with " well you most likely have worked your last day" we were all stunned not understanding what he meant. Before we could ask he followed up with "so do we know what kind of life extending measures you would like us to take?" after a second we began to digest what he was saying and asked him what he was referring to. After all we were just told that he was needing some mild I.V. antibiotics to increase his kidney function back to 100% and we should be on our way.. He just said that he could not be sure at this moment and that he wanted us to know how sorry he was and abruptly left the room. We sat in silence for several minutes trying to digest everything. For the next 5 hours a whirlwind of nurses,phlebotomists,and at least 3 different physicians came in and out of the room each one repeating how sorry they were but not one of them telling us why. They decided to keep my father overnight. By morning they were able to do the CT scan. The surgeon came in and let us know that it was the gall bladder that was looking to have caused all the issues.. She opted to do exploratory surgery and told us that she needed to get some tissue samples if she was able. Having 3 other family members who have had gall bladder surgery we were all relieved. I waited with my mother while they did the surgery. We were then ushered to a side room for private consult with the surgeon. When she entered the room she looked immediately to the ground and began with the now all to familiar words " I am so sorry" we were stunned .. we asked if my dad was okay.. she assured us that the surgery went fine and that there were some other things going on. She told us there appeared to be infection in the tube leading to the gall bladder. She had placed a temporary stint in place to relieve the pressure.She then said how sorry she was once more and how life changing this was going to be for our family. so I pressed the doctor and said "stop telling us your sorry please... we don't know why folks keep saying this.. is it because he doesn't feel well or is there something more?" She then told us that as of the initial visit to the ER that the blood test had detected cancer cells..She continued saying it was stage 4 and that the liver was fully engulfed, too many lesions to count. She told us the cells were in the upwards of over 50,000 per unit of measurement. We asked if she had or was going to disclose this information to my father.. she told us that she wanted to do so later that day when she could get other important staff in on the conference.We were left with one parting statement.. "please if you do nothing else, think of quality of life vs. quantity as this is not a fixable situation" long story short.. the hospital released my father two days later without a doctor/surgeon uttering one word to him about his condition.. on the top of his release paperwork were the words "possible cancer" my father went home and two days later developed a serious fever and was rushed to a larger hospital hours away.. they rescanned him and found that the tumors had grown in number and size and that he was very anemic. After being told that it was time for my dad to opt for a medical retirement he was advised to file with SS and also the VA as my dad served in Vietnam in the Navy. He was finally diagnosed with Cholangiocarcinoma suspected to be caused by liver flukes (parasite) and they have told us that it is intrahepatic and extra hepatic.. he has had numerous stints placed and yet still is quite jaundiced.. he has had several blood transfusions Two weeks ago he developed an acute deadly bacterial infection of his blood. Since July he was given a max life expectancy of 6 months if he chose to try chemo. They told him after the last hospitalization he should consider hospice.. my mom took a crash course in home health and he wants to leave this earth at home with her taking care of him.. As of two days ago he developed swelling in his legs.. They have found that he has acute amounts of blood clots in both legs as far up as his groin area.. So we have been told it is almost more likely that we will lose him to the blood clots now before he succumbs to the cancer.. My heart aches with the helplessness.. it seems to get harder to deal with every day not easier. If things were not already tough enough there is the constant hurdles of the insurance companies and the fact that he made too much money prior to the illness to qualify for some things and yet he is too young to qualify for others. I think it is awful that patients and their families have to go through so many rough patches of red tape with insurance companies etc. while already facing such a difficult battle.
There has got to be better ways of detecting this and much better bedside manner for patients and their families when this is discovered..
I just don't understand why a doctor who has the information of my dad's military history and was seeing him on a regular basis was not informed enough to screen for this. I have made it my mission to get the word out via newspaper and those that will listen to get checked.. I would not want one more family to go through the torture.
Thank you for letting me share.
My heart and prayers and healing goes out to each and every one of you and yours that are fighting this battle.
Posts found: 5
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