Please join us in welcoming rpooo as your new Community Leader for the Cirrhosis of the Liver Community! rpooo has a lot of knowledge and experience as it relates to Cirrhosis of the Liver. We look forward to working with your entire community!
This is very exciting that MedHelp has added a group where we can discuss our day to day triumphs and knowledge we have learned to make living with Cirrhosis as tolerable as possible. Please feel welcome to post your questions and concerns for myself and other MedHelp members to assist. I also welcome anyone not comfortable posting in the group to send a private message (email) and I will do my best :) Welcome to MedHelp "Cirrhosis of the liver community".
Thank you so much for this forum. Looks like I've beat Hep C. Have my 6 month blood test the end of this month. Have been undetectable which I am grateful for but now realizing that a lot my symtoms were coming from cirrhosis and not so much the hep c.
Trying to make a list of the things that worry me the most but still not sure how to go about bringing it to my doctors attention. I'm finding nausea and stomach troubles still persist.Fatigue and weakness, wondering if that is from the low platelets. Mine are now dropping into the low 50's. Wondering if doctors know to start talking to us about our cirrhosis now that treatment is done or do we need to bring the subject up. So many questions I don't want to overwhelm my doctor but that's how I've been feeling. Wondering if anyone else is feeling this way.
Congratulations on eliminating the hep C that has been injuring your liver for many decades. That is a huge accomplishment!
Fatigue and weakness are two of the commonest (?) symptoms of liver disease. Unfortunately there is no pill or treatment to counteract these symptoms. Moderate exercise and being active is the best thing that many of us have found helpful and maintaining over strength and energy.
The liver coverts sugars from food into energy. When the liver is damaged and not working properly there is very little reserve energy stored in the liver. That is why we are easily tired. We are always running on empty! This is one reason cirrhotics are suppose to eat many small meals per day. To maintain a constant input of food energy.
Platelets are used by the body to clot blood. For example when you cut yourself. Platelets travel to the break in the blood vessels causing the blood to clot so you stop bleeding. Patients with advance cirrhosis have problems clotting blood and have dark patches under their skin where they have bled from any small bump or spontaneously. Blood clotting (INR/PT) is used to determine who illness a patient is when they are waiting for a liver transplant. It is 1/3 of the MELD score.
Nausea is common in cirrhotics. I experience nausea to different degrees probably 50% of the time. Sometimes I am so nauseous I can't even walk any distance without feeling like I am going to vomit. Not good for the social life if you know what I mean. I have been given Prochlorperazine 10 mg for nausea. Others find other drugs helpful.
Some of the nausea I experience may be from the diuretics and beta blocker I take daily to manage other more serious complications of End-Stage Liver Disease.
I am not sure what you mean by 'stomach problems' so I can't comment on that one.
Perhaps you can write down you questions as you think of them and then ask them when you have formulated your ideas?
Liver disease is a very complex disease which effects many other body processes even our brains. While we have many similar complications and symptoms each person experiences them is there own way and to various degrees. So what may be problematic for one person may not be a major issue for another.
Hang in there. Your liver is no longer being damaged by hepatitis C replicating a billion times a day and that is a very good thing. I am going to have to cure the virus either before or after my transplant so hep C is always an issue until we are free from its harmful effects.
Hello Streamline and welcome to our new cirrhosis of the liver community. Congratulations on your Hep C recovery.
It's a very good idea to make a list of symptoms you are concerned about. Your doctor should at this point be monitoring the condition of your liver with lab testing and imaging. A CT scan or liver biopsy should be performed to diagnose what stage of cirrhosis you have reached.
Your doctor will understand you are very concerned and provide you with information concerning diet, exercise and medication. Learn all you can about cirrhosis so you may better communicate with your doctor and to decide what treatments are best for you. You have done great so far. Obtain copies of your lab results with each test performed. Using resources like search engines and group members can advise you on how to make changes in your lifestyle to help correct the enzymes that are out of range. Compare each test to the last and see the difference you can make. Abstain from alcohol completely as it will kill off healthy liver cells very quickly and cause your cirrhosis to advance more rapidly. A low fat/low sodium diet may be necessary.
Now that the Hep C virus is cured or dormant your liver can finally begin to make leaps of recovery with the exception of the severely damaged areas. This recovery can take years and in many cases full recovery is not probable but we can learn to survive many years with this disease. Don't hesitate to talk to your doctor he/she wants to help you the best they can.
I wish you the very best and I look forward to helping you along the way.
Thanks for the encouragement. Supposedly I'm Stage Child Pugh A. My platelets are quite low for that stage I think, I'm in the 50's now 6 months off triple therapy, but I'm not the doctor so I'll take the early stage. The nausea and stomach pains are what I am concern about most right now. Waking up in the morning is the worse. I guess this disease never makes us feel rested no matter how much sleep we get or maybe it's just me. Trying to find out what I can and can't eat or find a medicine that will sooth my stomach. What I am doing is writing down my symptoms I have because it seems that when I feel well I forget about what really is making me feel ill. I'm also finding that I get nerve tingling through my legs and feet.Everyday seems to be a new and different experience. I don't drink or would never touch alcohol. I find that we don't have many pain medications that we can take as cirrhotics so I stick with codeine/fioricet for headaches/migraines, Excedrin I would rather take but I think it is worse for me and my stomach can't handle aspirin. I also find the codeine/fioricet helps with the stomach pain.What a mess this whole thing can be to figure out. Trying to do the best I can, but it's not easy. Hoping to see some liver repair I'll take as little as I can get at this point. I think with this disease as probably with any disease not being able to trust our bodies can be quite stressful.
You might already be familiar with the child pugh scoring but just in case I thought I would mention to you the range it 5-15. So "A" puts you at 5 or 6 range. This is good news for you since this indicates your liver seems to be functioning quite well.
Child pugh scoring doesn't seem to be as commonly used as MELD scoring:
Although the Child-Truscott scoring system was the first of its kind in stratifying the seriousness of end-stage liver disease, it is by no means the only one. The Model for End-Stage Liver Disease (MELD) is used increasingly to assess patients for liver transplantation, although both scores seem to be more or less equivalent.
INR, Bilirubin and creatinine=MELD
Using your lab results you can follow this link to calculate your MELD score:
Use caution when taking medications OTC (over the counter) or prescription. Medications that metabolize in the liver can cause further damage. Here is what I found on codeine fioricet: The following other conditions may worsen while taking Fioricet with Codeine: asthma, chronic obstructive pulmonary disease (COPD), sleep apnea, liver cirrhosis, porphyria or liver or kidney disease.
Please ask your doctor to recommend something that may be more suitable. Maybe add this to your list of questions.
Also add the nausea to your list of questions since evaluating your medications or further testing may be required.
I know it feels like a lot going on right now and it's very uncomfortable but keep doing your best to stay active and eating healthy. Adjusting your lifestyle may seem difficult at first but after a while it becomes the normal and without even realizing it you will find yourself doing healthy things to pamper your liver for the best recovery possible.
For muscle aches try stretching and light cardiovascular exercise. This will increase blood flow to the muscles and flush out the toxins your liver is unable to filter. Be sure to consult your doctor concerning exercise as well.
How long will it be before your next visit? I hope some of this information will help you feel better, Take care.
Thank you for the meld score calculation.It's a good way to watch you own liver functions. I put my numbers in from my April blood work and came up with a meld score of 7. That last evaluation was a year before treating so it has been two years now. Looks like my cirrohsis might have progressed. Have to read up on now.
The pain medication is on my list. I get headaches/migraines. All of my doctors know about the medication and they all seem to be OK with it as long as I take as needed. Codeine is hard on the stomach at times and would like to find something kinder and not so addicting but as far no doctor has offered an alternative. I think I may need to see a neurologist but again it is on my list of questions. My appt.with my liver specialist is the end of June. Great information from this sight as usual. Thank you very much.
After putting my numbers in it looks like I am a child pugh A 5. Very good information to watch for progression or regression.... Two years ago they said I was child pugh A 4. Have to look for the blood work and see what changed.
Wow looking back to 2008 through all the medications and years nothing has changed but hopefully I'll maintain SVR.My enzymes are normal now but the platelets are a lot lower then when I started out and my hgb is lower then in 2008. Fascinating what the body can take and still survive and I guess that would explain why I still have a lot of the same symptoms as pretreatment.
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