Bostonmike, hello, and welcome to the forum! You sound like you have been through a lot, but it all sounds like progression of liver disease. Oddly, I had problems with edema and ascites for the first time when I had liver cancer and a hip revision surgery in '06. I was diagnosed with hep C in '93. The edema/ascites took months to resolve, with low-sodium diet and diuretics. Also, the more active I became the less fluid retention I had. I have some cramping of my toes and also some pain in my feet. I think the pain is from nerve damage when my feet were so swollen. There are also times when the tops of my feet itch something awful.
We have a member (David) who recently had a liver transplant at Mass. General and is doing great, so I think you have finally hit upon a center with a good liver treatment team. So is it a colonoscopy you are having or an endoscopy? You might end up having both, especially if you are evaluated for liver transplant.
Good luck with your test and let us know what the follow-up reveals.
BostonMike, thanks for bringing us up to date. I also had to juggle my diuretics a lot in the beginning. Now, I'm weaning off of them. I feel that you are in a great place for treatment and will be well cared for.
Isn't swordfish one of the fish that's warned against due to high levels of mercury? It's good that you are eating fish, though. Poultry is also good. Stay away from red meat. Also, ask for a meeting with a nutritionist when you return to MGH. Some people need to watch their intake of protein, due to the liver's inability to break it down. Remember that beans are also a good source of protein, as are eggs and low-fat cheeses.
Mike, next time you go to MGH for followup with your doc, ask that your medical records (including labs and scans) from there be sent to you after every visit. My hep doc at Mayo does this automatically. However, other doctors haven't and I've had to request copies from Medical Records at $2.00 a page. That can really add up, especially if you have a hospitalization.
Mike, in the future ask the doctor at the end of the visit to send you recent labs and scans. If he/she is agreeable, this can save you a little money and hassle. Be sure to follow up on the nutritionist, too. I think you are doing really well, thus far, though, in being proactive with your health.
Just a reminder about the protein. Its much better if you stick to soy protein because of amonia problems. I would make my husband smoothies with soy protein. That helped a lot.
Bostonmike We found the liver specialist do not check your blood ammonia as a rule. They just go by how you act. BUT our gastrointerologist would check it frequently. Jerry said he could tell sometimes when his got high but then if he got to the point of no return he didn't care. Once I caught him headed out side with a butter knife to trim the trees. We just learned to stay away from the animal based protein. As my daughter would say if it has a MaMa its the wrong kind of protein!!
I heard or read somewhere that beef is the hardest thing for the liver to break down. Even in a healthy person, it takes 48 hours to go through the system and be eliminated. So it makes sense that a person with liver disease shouldn't stress his liver even more by eating beef, although a small piece once a week is not likely to kill you.
In her book, Hepatitis & Liver Disease, Dr. Melissa Palmer says that people with unstable liver disease or decompensated cirrhosis should lower the percentage of protein in their diets to 10-15%. She further states that a diet high in animal protein (which contains a lot of ammonia) can precipitate an episode of encephalopathy. She states that people prone to encephalopathy should curtail their use of animal protein, and notes that even a lean, trimmed cut of beef contains 50% fat.
With all this taken into account, I personally think it's better to err on the side of safety. I'm not a total hard-nose, though, as I'll eat a filet mignon about once every 4 months...but it's definitely an exception rather than a normal part of my diet.
Post Edited (hep93) : 1/16/2010 4:48:00 PM (GMT-7)
Hey one of our favs was 1cup plain yogurt, awesome for intestinal flora, fresh fruit with 3 ice cubes in blender and a splendor for sweetner..... brain freeze
Mike, sorry you continue to have problems with fluid retention. Actually, 40 mg. of Lasix (furosemide) is not a lot. I've known of people who regularly take 80 mg. The Aldactone (spironolactone) is only a mild diuretic. It was explained to me that its main purpose is to balance the potassium lost from the Lasix. Originally, they put me on Lasix alone. My potassium plummeted. So then they tried adding potassium tablets, which were so huge that I had difficulty swallowing them. I would have to break them in half and coat with honey just to get them down. And I was still having problems with fluid and low potassium. So they added the 100 mg Aldactone (in place of potassium tabs) and it finally straightened out. They also raised the Lasix to 60 mg. Now, as I stated previously, I am working on eliminating diuretics completely. Currently, I'm only taking 40/50 twice a week.
Don't feel that you are being a bother--either to us or your doctor's office. If they are open tomorrow, give a call and let them know what is going on. See if your Lasix should be increased. Meanwhile, try elevating your legs above your heart for 20 min. at a time, 4 x a day. Also, are you using compression stockings (TEDS?)
Mike, I am so sorry you are having a hard time with the fluid and cramps. The Mag Ox will help the other prescription may not be filled cause of insurance, that seems to be the biggest issue with meds. Although sometimes they will not fill without more info cause of conflict with other meds or medical issues and the Dr will have to speak to pharmacy. We ran into that a few times..... they want to be excused from responsibility. I know there were times Doug would be on 100 spironolactone and up to 120 of furosimide after they blocked his shunt. I so feel for you having a rough time. Whenever I see these post for everyone I just feel so sad that I cant help more. I dont have these issues but I so remember what my sweetie went through and I feel that same frustration not being able to make it easier for everyone.