Cirrhosis Support Group
Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and...
We are all just looking for ways to feel better and survive this awful disease. As you may already know is that there are three major causes of cirrhosis alcoholism, obesity and auto immune. In my case alcoholism was the cause. I was diagnosed 03-23-10 and stopped drinking immediately. I never have given it another any consideration. I spend a lot of my time in alcoholic forums attempting to help others that may be heading down the same path as myself.
I bring this up to share a little about myself but also to possibly help others that have cirrhosis for the same reason as myself. Hepatic encephalopathy (HE) is very common for cirrhotic patients and very difficult to deal with at times. My ammonia level commonly stays around 70. Until recently I thought living with HE was very difficult until after going through several tests with a neurologist an EEG showed that due to nerve damage from years of drinking my brain has tiny seizures all day long one right after another. They are so small that I dont feel them. This is called neuropathy. I mention this because the side effects are very similar to those of HE. There is medication available to help control these seizures called gabapentin. 300mg twice daily seems to be helping. This medication is the only one of its kind that metabolizes in the kidneys so you are not running the risk of damaging your liver any further.
Well thats about it, I just thought I would pass this along so that maybe it could help some others going through the same thing. I still live with HE but this helps.
Randy
I bring this up to share a little about myself but also to possibly help others that have cirrhosis for the same reason as myself. Hepatic encephalopathy (HE) is very common for cirrhotic patients and very difficult to deal with at times. My ammonia level commonly stays around 70. Until recently I thought living with HE was very difficult until after going through several tests with a neurologist an EEG showed that due to nerve damage from years of drinking my brain has tiny seizures all day long one right after another. They are so small that I dont feel them. This is called neuropathy. I mention this because the side effects are very similar to those of HE. There is medication available to help control these seizures called gabapentin. 300mg twice daily seems to be helping. This medication is the only one of its kind that metabolizes in the kidneys so you are not running the risk of damaging your liver any further.
Well thats about it, I just thought I would pass this along so that maybe it could help some others going through the same thing. I still live with HE but this helps.
Randy
Diet and exercise are key to feeling much better. My MELD score is down to 11 now from what use to be a 17 in the beginning. How long since your diagnosis? Also how often are you being seen by a specialist? With every lab test you have done at the time of your results ask your doctor for a copy of them. There is no charge. Bring home the copy and use Google and other search engines to learn what each level means. Myself and others here will be glad to help you with this. When you look at the lab results on the right hand side of the page there will be a range of what your level should be in. Using the resources I mentioned above you can challenge yourself to do what it takes to make significant changes. This can be quite rewarding at times and the one to benefit is you! Place the lab sheet in a folder and do the same thing with each lab data you receive. You will be able to compare the labs and see what changes in your diet and exercise are required.
When the liver does not function well anymore toxins from the things you ingest build up in your body and not just in the blood stream either. They also deposit in your muscles and joints causing them to ache, so its important with your doctors approval to do cardio vascular exercise, this will increase the blood flow to the muscles and tremendously help relieve the pain. stretching every chance you get will also help. I even do a small stretching routine before climbing into bed. You will notice the exercise will help with the hepatic encephalopathy as well.
Xifaxan works great but you should also keep on hand lactulose. If you dont have any prescribed then talk to your doctor. The side effects such as diarrhea can be awful but that just means you need to lessen your dosage. Do you know what your ammonia level is at? Protein is what is directly responsible for the creation of ammonia in the body so the amount you ingest is to be limited. So a low protein, low sodium and low fat diet is what you need to try to maintain. No one is perfect and this lifestyle change may seem tough at first but after a while it feels very normal and you can decide for yourself on that very day if you can eat an unhealthy meal based on how good you have been doing and feeling. Foods that are high in anti-oxidants are very beneficial as well. One last thing is cirrhotic patients no longer absorb nutrients as well so vitamin deficiencies are very common. To start with a multi-vitamin without iron would be helpful. This type of vitamin is normally used by seniors.
I also suffer with anxiety really bad. It is hereditary and also very common amongst us alcoholics. I was an engineer in television for many years and I finally reached a point I could no longer drive or even pick up a pen to take notes during important department head meetings. My head would twitch around large groups of people and even a few times had to leave the movie theater because of it. I finally talked to my general doctor and discovered a little miracle pill called Lexapro. It takes a few weeks for the pill to become totally effective and the correct dosage to get figured out by my doctor. In my case was 40mg, pretty high for this medication but sure worked very well. Most people in my family have anxiety/depression. Nearly the same medication is given to treat both. After two years there were some side effects of the medication I decided not to live with anymore so after researching what my liver can handle and talking to my doctor I was prescribed Xanax. This is also another good medication. The problem with this medication is that it is commonly abused and for an alcoholic to be trusted taking it doesnt often happen since alcoholics have addictive personalities. When this drug is abused it can seem very similar to the buzz alcohol would provide. I use it very carefully and only as prescribed. I quit drinking the day of my diagnosis 03-23-10. So it's been nearly two years for me.
My main point here is there is medication for anxiety/depression that is reasonably safe for you to take without further damaging your liver. You need to talk to your general doctor about something that can help you. I understand how you feel since I've felt how your feeling. The depression hasn't been much of a problem for me since I kind of expected I might be in this boat someday. Drinking 23 beers a day I knew I couldn't get away with that forever! So dumb!!!
Support groups: Well Since you ask there are a coupe others I would like for you to check out and please keep in mind that Daily Strength has wonderful people here that love to help and understand what you and I are going through. Keep in mind it is very possible to live for many years with cirrhosis depending on your circumstances and having a MELD of 10 I would have to say that you could be feeling quite normal. So some other groups to check out would be MDJunction and MedHelp. Another group here often mentioned is cnlc.us It has a lot of good people and resourceful information regarding cirrhosis. I just dont get along with the site owner/developer but I want you to have as many resources as you possibly can. Support groups can really lift your spirits and you can find people that like to share anything they know to help you feel better and recover as well as possible. You can find me in all these groups as Rpooo with the exception of cnlc..Lol If you have any other questions or just need to talk all of these news groups notify my phone with every reply or email you send. You can also email me at rpooo@live.com and Ill get back to you as soon as I possibly can.
I really hope the best for you Annabelle and God bless you. Take good care of yourself always.
Randy
I somehow came across your post and thought I should check on you and see how you are doing? I hope to hear from you when you have a chance :)
Randy
Randy
Luckily never hit anybody, but I've got lots of little dents in my car from scraping the side of my garage, ripping off my passenger side mirror, etc.
Never heard of Lexapro, will mention it to my GI in August and get his opinion.
I tried Xifaxin for about three months and while it worked fairly well, the cost was way beyond my means. Lactulose I refuse to take any longer, haven't had it in about three years. Even modifying the dosage, it was just to uncomfortable for me.
Exercise and diet to make a big difference. I do an hour a day of treadmill and weightlifting a day, which has made a big impact. My memory, my coordination, just everything in general has improved. HE particularly has completely disappeared, my mind is clearer than it's been in years.
I also take Xanax, not a lot, but just enough to calm my nerves, mainly to help me sleep at night. It can be highly addictive, but like you, when I got ill, I stopped drinking immediately and never looked back, so am also very careful with the Xanax.
Keep up the good work, hope to run into you again on this forum.
rpooo, I noticed you said that there are 3 main causes of Cirrhosis, alcoholism, obesity, and auto immune. You left out another main cause, which is Hepatitis C.
I have been very active in the hepc group, but since things seems to be heading for Cirhosis for me now, I'm going to be more active here.
I had a transplant 2 years ago after my Hep C had finally led to early Cirrhosis and liver cancer. Now, my new liver is in trouble. I'll know very soon if I have advanced to Cirrhosis. Even though the biopsy I had done in April showed stage 2 fibrosis, I'm showing symptoms of Cirrhosis. I'm having an endoscopy on Sept. 6, because right now, there is a partial blockage in my left portal vein, and I have ascites in my abdomen, much swelling in my feet and legs, low platelets, etc.
The only treatments available for my Hep C since my transplant, because of my genotype, is interferon/ribo, which I've been told holds less than a 50% chance of helping at all. So far, I've chosen not to do that.
I'm going to ask you, rpooo, to be on my friends list, so you can read my posts about all I've been through.
I'm praying for all of you here, and many of you, I already am familiar with from the Hep C group. God bless you all.
Your friend, Marilyn
Of course Hepatitis C, the second leading cause of cirrhosis in the US from what Ive read and any other causes I failed to mention I apologize. Im really sorry to hear of everything you have been through and I admire your strength and courage. I remember reading some of your posts before but it has been a while since I have been here on Daily Strength. I will gladly read some of your latest posts but unfortunately I am not real familiar with Hep C. Are you taking medication for thrombosis to assist with dissolving the blockage to reduce the possibility of varices and splenomegaly? Stage two fibrosis in April to cirrhosis by the end of August seems like very rapid advancement but as I mentioned above I am not too familiar with Hep C. How are your lab results reading?
I have a few other suggestions I would like to mention to you in a PM if you dont mind. I hope the very best for you Marilyn. Take care my new friend.
Randy
P.S. Pugdaddy always good to hear from you. I hope you are doing well!