Baba, thank you for the additional information. I'm sorry you are having to go through this. The best suggestion I can give you is to read the educational thread, as I mentioned in my previous post--especially Stages of ESLD.
I would go ahead and take the pain meds as necessary. They are not going to harm your liver any more than the other meds you are taking, and there is no prize for suffering. Has a transplant been mentioned?
BaBa, I go to Mayo Jacksonville! They are fantastic. They literally saved my life, as I had inoperable liver cancer when I first went to them. You made a wise decision. And just let me say that if they don't accept your insurance or you have none, go to Mayo's financial offical and ask for the application for charity help. Since '95, they have been picking up the balance of my bills, after what they get from Medicare. If you have any questions about this, you can e-mail me. (Just click on my name and it's in my profile.)
I'm glad to hear you are getting more pain meds. Keep us posted!
Yes, Rick has come a long way and so have I, although I still have hep C and cirrhosis.
BaBa, which Mayo are you going to?
I have never been a candidate for transplant as my labs have always been fairly good, even when I had liver cancer. I have never been in liver failure. However, the surgeon told me that if the cancer came back in the remaining left lobe, I would need a transplant. Conversely, my hepatologist said that they would catch it early enough to be able to eradicate it surgically or by other means. I have blood work and a scan done every 3-4 months.
I'm sorry, I can't answer your question about bilirubin. While mine is a little elevated, it's never been really high. In fact, none of my labs has been off the charts, so lab work doesn't really tell the whole story with me.
Since Mayo Rochester is the original one, they are still first with new treatments, etc. I had TheraSphere treatment for my cancer, which had never previously been done at Mayo Jax, but had been in use at Mayo Rochester for a couple of years. So you are in good hands. When you see the doctors there, they will have you undergo a lot of tests, even if you've had them previously elsewhere. Be sure to take a list of questions with you to ask them. That's one thing I truly love about Mayo docs: They never rush me and always give me as much time as needed to go over test results, their treatment plan, my questions, etc.
The way that transplant is handled now, where the MELD score counts for so much, a person generally has to be within 5 days of death before a transplant will be done. With the large demand for livers and the short supply of them, they have to go to people who are literally at death's door.
Baba, we have a thread on itching if you'll do a search. Some say that Gold Bond lotion and oatmeal baths are helpful. I'm not sure if my itching is from liver disease or dry skin, but I find that Dove Cream Oil Body Wash or Dove Pro-Age Body Wash applied with a long handled scrubby is helpful. I also use bath oil on damp skin after my shower.
With the dumping syndrome, I imagine you have to eat easily digested foods, but is fish and chicken a no-no? If you can eat these at least 3 times a week, I would think it would help maintain muscle mass.
The MELD score is calculated based on your labs. If you will look in the Hepatitis Resources at the top of the page, I believe Penny explained it in the educational thread. It's a combination of serum bilirubin, INR, and serum creatinine. If a patient is on dialysis, that's also figured in. Obviously, the higher the score the more one needs a transplant. I've forgotten how high it needs to be to be listed for transplant, but I believe it's 15 or higher. Someone here will know.
Congratulations to you on making the decision to take control of your situation!
Post Edited (hep93) : 6/11/2009 4:24:56 PM (GMT-6)