Liver Diseases Support Group: Let’s connect

@ccballer45 Welcome to Connect. I'm fully aware of how alone you must be feeling with those uncomfortable symptoms and not knowing what is the cause. I was diagnosed with liver disease years ago, and over time, I experienced some of the symptoms that you are experiencing. In my situation this was a gradual health decline.
Since you have already seen a liver specialist, and they have ruled out liver disease as being responsible for your symptoms, I believe you should contact your primary care doctor (PCP) for further investigation. They will likely want to get you in to see another specialist.
Do you have someone to go with you? It is always helpful to have an extra set of ears - (especially since family thinks you are making this up).
Do you have a primary care doctor that you can contact?

@ccballer45 I have hemochromatosis I was tired with some brain fog. Have your iron checked. I have to have a philbotomy every month. Mine is hereditary. There are other types of hemochromatosis so having your iron checked is important.

I was diagnosed about 8 months ago with F3 liver disease with advanced cirrhosis. I started exercising and being more mindful of my diet, cutting out a lot of processed food and sugar. I have suffered from anorexia and body dismorphia in the past so this is starting to trigger that thinking! I am feeling lost on what and how much I should be eating. I am currently down to 85 lbs. Any advice?

I am Tia. I am 43. I had alcoholic cirrhosis. I had a liver transplant in 2024. I am looking for others that have similar experiences. I want to help people. I feel the strong urge to get involved because I was in the worst shape before transplant. Post transplant, I am feeling so blessed and well. I still remember the mornings that I couldn't even sit up on my own. I remember dying slowly. It can and will get better.

@alexandern I've looked through a lot of posts to find someone with about the same level of liver disease as me - from my MRE report I'm between a stage 3-4 with fibrosis. I received this diagnosis from my MRE report last month but I don't see my hepatologist again until April so I really don't know anything about it except what I've been reading. From everything I can tell, diet is the most important thing I can do for myself right now. So, I've been researching liver healthy foods and eating very light. I have lost nine pounds and feel pretty good. The only symptoms I've ever had have been some discomfort under my right rib cage (which has been going on for years). I really want to keep it this way so I'm taking all recommendations. The question I have for you is, do you think it is okay that I won't be seeing my doctor again until April? I was surprised when these results came back and she didn't call me to discuss them. I messaged her on the patient portal and her only response was to tell me to continue eating lean protein and keep trying to lose weight. I then asked about Rizdiffera (which we discussed at my last appt and had decided to hold off on) and she told me that it was too late, that my liver disease was too far advanced. I sort of feel abandoned (?) at this time. Last year we did blood work every three months for a whole year and now, after my results came back worse, we are doing nothing until April. My questions for you are: How often do you see your doc, do bloodwork, etc? Do you think this is normal protocol? How long has it been since you were diagnosed at this stage, changed your diet, started losing weight, etc? I'm trying to get a feel for how long it might take me to see results? Also, do you have symptoms, anything I should watch for? Again, I know diet is the most important and key thing to do and I am doing that but I also don't want to miss the ball on something else important (like I did with the Rizdiffera). I'm also curious to see if anyone answers your question about your diet, it seems that you are doing the same thing I am - I don't feel like there is much more I can give up and still feel like I have any kind of food life lol!

@kristinbrooke I think that 85lbs is very scary and you should definitely talk to your doctor and friends and family about getting help. I can only imagine that it is very confusing being diagnosed with this disease and every web site telling you that losing weight is the key to better health yet you are already suffering from malnutrition so what are you to do? It sounds like you need a good dietician to help you come up with a high calorie healthy diet, maybe even some nutrition drinks that don't have added sugar would be helpful? Definitely get with your doctor on this and don't wait any longer because you need to put on some weight to be safe.

After RUQ pain, it's been found that I have a 6.5 cm biloma.
Apparently a non emergency according to the ER, and the folks scheduling my MRI. I'm on team 'fix it now'...
Any insights or experience with this?

@kaljean my wife has similar size Biloma on her liver. Fistula or drain created from the biloma fortunately created a drainage path right into her bowel. A good thing as infection from the biloma draining elsewhere will certainly be a problem. Long term strong antibiotic therapy and a drain placed near the biloma has helped. Shrunk to 1.1 cm and recently no fluid from the drain indicating it might be stopped finally. Interventional radiology also placed a stent to help with drainage as we also had a small tear in rebuilt bile ducts. The goal with biloma is to shrink it and eliminate it with antibiotics or ant fungal medication and make sure that the fistula or drainage path from it is managed so you are not putting infection back into your body. Sepsis issue tough to deal with and happens fast. Monitor for fever and blood pressure. If either becomes a concern get to the ER fast. Best to you.

@advocate4her Thank you. It's so rare...so glad to hear from you.

@tiabean ,thanks for your post.My wife is going through the steps required to get on the "list". Its daunting when this must be faced by a family. All the changes that must take place,i.e soc sec,medicare, I O P, The list is massive, but after reading your post I know We can get through this. Again thanks Merry Christmas...mike