My father needs help

[Sarainino]

Hello, my father was diagnosed with Hep C 10 years ago. Ten years later started feeling Chronic fatigue, abdominal pain/back pain, cold feet and hot hands. On Nov 5, 2012 he began Clinical Trial: drug name: B120335 protease inhibitor (Boehringer Ingelheim) including Pegasus & Interferon.  On April 19 finished therapy, the chronic abdominal pain was constant during therapy. April 20th was taken to ER & had Cat Scan found tumor in his liver, soon after had Chemo Embolization and MRI every 3 months, the tumor did shrink however, he continues to have Chronic abdominal pain w/back pain. He also has had a Colonoscopy and his Hepatologist says his colon looks fine. He does say that he has stool backup and gas. My father has done Miralax, prune, lots of water and coffee enemas daily and moves bowels daily. He has seen a Neurologist for the back pain and now seeing a different GI for abdominal pain.  
The new GI is testing him for H-pylori, celiac etc.

This situation is creating depression and he is feeling that he is not being heard by the medical establishment, we have done chiropractic treatments and acupuncture. In addition his belly gets really large and hard. Not common for how he looked before the tumor was detected.

Hope I can get some help for my father .

[Sarainino]

Thank you for your feedback!

[ceanothus]

The bloated abdomen sounds like ascites, which is fluid building up in the abdominal cavity, and yes, it can be painful. Have they done procedures to drain the fluid off? Is he on diuretics and on a salt-free diet? It can be dangerous to let the fluid build up too far, so the doctors need to be aware of this. If they seem to not be paying attention to the problem then either they aren't very good doctors or perhaps the patient isn't making enough complaints. I would strongly advise that you go with him to every doctor appointment. People who are really sick are very rarely able to concentrate well enough to remember all the things they need to bring up or to remember all the things the doctor tells while they are there. Having a family member or close friend along helps immensely. I'm nowhere near as sick as your father is right now, and I still get huge benefits from having my husband accompany me to my hepatology appointments. You can probably help him more if you educate yourself on the specifics of ESLD (End Stage Liver Disease). I wish I could be more helpful but you will find more people who are far more knowledgeable about this at the Cirrhosis of the Liver community, and you can search either that community or this one for threads on the subject by typing ESLD into the "search this community" box at the top right of the page. One thread there that I found especially informative can be found at http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/ESLD-without-bleeding-out/show/1830974, but I'm sure there are many others. Good luck to you and your father.

[Sarainino]

My apologies for having the dates off, the treatment was 6 months right after treatment he went for a cat scan and after found the tumor, then the emoblization. He has a very good Hepatologist in NYU. The lesion was found on the upper dome of the liver, yes he says its cirrhosis, and he is in the liver transplant list.

He is getting bloated his abdomen  is very hard with lots pain which radiates up to his back he has been to so many doctors we want to know if anyone knows anything about having this situation with having liver disease.

[ceanothus]

Welcome to the forum! You've found an excellent resource here, as many members are extremely knowledgable, generous and caring. I'm afraid I'm a little confused about what happened when however. You said he started treatment for the Hep C on 11/15/2012 and finished it on 4/19/2013, is that right? And then he had the Cat Scan that found a tumor in his liver on 4/20/2013? It sounds like a lot of stuff jammed into a very short period of time if he's already had chemo embolization done. What exactly were the results of his treatment and have they said if he cleared the virus? Do you know if he has cirrhosis? It sounds like he might, as liver cancer is far more common with cirrhosis. Where is he being seen? If he has cirrhosis or liver cancer he truly needs to be seen by a good hepatologist AT A LIVER TRANSPLANT CENTER! These are the only doctors with adequate training and experience to handle all the complications of these diseases. Do try to give us a little more detailed information, as I'm not sure I even have the time frame right for this. I hope you will post more details soon!

[Idyllic]

Hi I am sorry your father is not feeling well. I just wanted to welcome you and ask what stage of fibrosis your father is. I found a link about the med he took (Faldaprevir (BI 201335) a protease inhibitor Faldaprevir and BI 207127, a non-nucleoside polymerase inhibitor) and I was wondering if your father cleared the virus. And if his cancer is completely gone.  I am thinking if your father's problem was more than irregularity the doctors would have detected it. You probably have been told this already but healthy eating & fibre in the diet can help promote regularity.

Be sure to check back as there are others who might have insight.