Post Edited (mybrother) : 8/18/2010 2:06:35 PM (GMT-6)
Mybrother, it is not a matter of just having the money to pay for transplant. I'm guessing that the reason he might be screened out due to his mental problems has to do with being able to follow directions prior to and following transplant, as there are many medications and appts. involved. They may also take his past drug and alcohol use into consideration. The best thing is to have his primary physician make a referral to a transplant center. Then let them tell him or the family what is required.
Is he seeing a hepatologist? That is who should make the call on whether he should be drained. The fluid can become infected, but the procedure to remove it also carries the risk of infection. I would think that Lasix together with spironolactone would be prescribed before going on to the next step of paracentesis. I take 20 mg of Lasix together with 50 mg of Aldactone twice a week, but when I had cancer it was 40 to 60 mg of Lasix and 200 mg of spironolactone (Aldactone) daily. I never had to be drained.
Muscle wasting is part of liver disease. His diet sounds okay, though he could use some fresh fruits and veggies.
It depends on what the ESLD is caused from. I had HCC and no longer have it, but I am a walking miracle. Be sure to get the best care for your brother that you can. You can at least slow the disease process and possibly put the HCC into remission. Did he ever have treatment for hep C? I doubt that he could have it now that he has cancer, but take care of the cancer first...or try for a transplant.
My brother, I think the doctor makes a good point about the portal vein. My tumor, which was in the rt. lobe of the liver, was 12 x 11.5 cm. It had metastasized into the inferior vena cava (a large vein that comes off the liver.) The first hospital said there was nothing that could be done. That's when I contacted Mayo. I was told that without treatment, I had 6 mos. or less to live. So first I had chemoembolization, which is pretty standard for the first step in treating liver cancer. Had to wait a couple of months to see how much that shrunk the tumor. Then they decided to treat it with a study drug, TheraSphere, which is microscopic beads of radiation that are directed right into the tumor via the femoral artery. More waiting for shrinkage of the tumor. After a few more months, the MRI showed that the metastasized part had shrunk back into the original tumor and that the tumor was dead--but so was my rt. lobe. So I had surgery to remove the rt. lobe with the dead tumor in it.
I have been cancer free for 3 yrs. and 3 mos. They keep a good check on me with MRIs and blood work every 6 mos. This doesn't mean that it may not come back at some point, but since it wasn't in my lymph nodes, I have a better chance of survival.
So I think you should see about shrinking the tumor before anything else. It's true that statistically the cancer does seem to come back after a transplant. So it's really important to shrink and kill it, if possible.
Post Edited (mybrother) : 8/22/2010 2:33:08 PM (GMT-6)
Post Edited (mybrother) : 8/22/2010 3:30:47 PM (GMT-6)
I did have ascites and also my feet and calves were swollen up to the point that they even "wept" fluid. It took quite awhile before they prescribed diuretics for me. That was prior to cancer surgery. I was never drained. And I haven't had a transplant. I still take Lasix and Aldactone twice a week. I'm trying to reduce it to once a week, but I do notice considerable swelling when I do that. Diuretics are hard on the kidneys, which is why I reduced the dosage. Also, I didn't seem to need as much as I was taking. The doctors have kind of left it up to me. I am very in tune with my body.
I was never agitated nor have I ever had elevated ammonia.
The things you are doing to calm your brother sound good to me! I am suspecting that it is the decrease in psych meds that is causing his agitation. It could also be a reaction to being physically ill, that he may not understand fully. How much does he know of his condition?
Because of the tumor having metastasized to the inferior vena cava. That's why I suggested focusing on shrinking your brother's tumor. Once it had shrunken back into the oiginal tumor and been killed...they decided to just remove the rt. lobe. No need for a transplant as the left lobe was functioning okay.