Alcoholic Liver Disease Online Support Group

I don't understand how I keep reading comments people make on this site about being diagnosed with a liver disease and then they are referred to a transplant center. I was diagnosed with cirrhosis almost 2 yrs. ago when i had variceal bleeding and almost didn't make it. I am just now getting mri's done but no liver biopsy ordered. I am thinking it's because my plalettes are low and liver is about 1/3 damaged. Is my doctor afraid of going in to the liver unless it's absolute necessary. I will be on my 2nd MRI in August to check the spot on my liver again.

Is my doctor not taking good care of me or is he just being cautious?

My doctor has never even mentioned a transplant center!

lorily07,

Is your doctor a GP, Internist, Gastroenterologist or Hepatologist? If you have cirrhosis, I would think you should be seeing one of the latter two specialists. How was the extent of liver damage determined, and by whom? Has he/she calculated your MELD or Child-Pugh score based on labs? Patients are often referred to a transplant center once their Meld reaches a certain number, which can differ depending on where you are in the country (assuming you're in the U.S.). I have cirrhosis and a MELD of 12, which is the threshold in my area for referral to a center. Do you have other complications such as HE or ascites? It sounds like you might need more information than you're getting- I haven't read your previous posts so forgive me if you've already answered all of these questions. I would be curious to know how they are saying "a spot" is proof that your liver is 33% damaged. There are many very knowledgeable and experienced folks here in the ALD group, as well as the Cirrhosis group. I'm sure if you post all the relevant info here and in the Cirrhosis group, you'll get some really helpful advice and feedback regarding your care. I'm sorry you are going through this, and I hope you get some satisfactory answers and explanations from your docs!

Two different doctors told my husband the biopsy really wouldn't give them that much information and the risks were not worth the benefit. His cirrhosis was diagnosed from a CT scan. His doctor said he'd mention transplant center when needed. His cirrhosis was from alchohol (why I am here) and he's got to be clean and sober at least six months. I would assume you just aren't that sick but best is to ask next appointment. Good luck to you.

Hi Lorily,

I'm sorry to hear of your troubles. I have limited knowledge on transplant evaluation as i'm fairly early on. In the UK complications such as bleeding Varices, HE etc etc are not automatic reasons for Transplant evaluation if the complications can be controlled. Patients can live a long time even with the nasty complications that go along with the disease. Unfortunately as there is a major shortage of donor livers they wait until you are very very near complete liver failure until transplant is carried out.Complications are merely controlled until this is no longer possible.

Hey Lorily!

Just wanted to pop in and say welcome to the group! The others have all given very good advice! MommaMac hit the reason for no biopsy (yet!) square on the head--a biopsy, regardless of the method performed, is an invasive procedure. You are at risk for extensive bleeding with your platelet count being low. Thus the doctors don't think this risk is worth the procedure.

While biopsy is the "golden" standard for specifically determining if a patient has cirrhosis, imaging tests, particularly CT or MRI scans, can often give a better picture of your liver's condition. Sometimes a biopsy is useful when the cause of liver damage is not apparent from a patient's history or lab work.

Hi Lorily,

I agree with dmanflan on this. From what i've read a biopsy can be a very unpleasnat procedure and would perhaps have little inpact on future treatment if the cause of disease is already known . As far as Transplant evaluation in the US, I would assume that a large proportion of people sent for Evaluation will be told they do not yet require transplant and return when symptoms can no longer be controlled? Perhaps Dennis can confirm this as I live in the UK. If you are not yet at Evaluation stage then take this as a good sign!

In the US, an individual is not generally listed for transplant until their MELD is greater than 15. A referral to a transplant center can occur at anytime but the actual evaluation for transplant, which must be completed before listing, may not occur until your doctors begin to consider your condition warrants proceeding with a possible transplant.

Check out http://mysickliver.weebly.com/meld.html for information about what MELD is and how it is calculated.

Yes Dennis,

I think it's similar in the Uk. I notice many people on the Cirrhosis speak of transplant. Although it may be necessary for some in a late stage I think it's important to remember that not everyone will need one and depending on the stage of illness they may not require even evaluation for many many years. Cirrhosis in the UK is considered more of a slow controllable syndrome than a terminal illness.

Post edited by: Guitar, at: 07/15/2012 12:12 PM