Looking for transplant center - ALD non-active drinker

[akoger05akog]

I used to drink but have not in a few months. I have been in a support relapse group for 1 month.
I’m 43 and have a high MELD of 33 and the doctors say I will most likely need a transplant soon. I hear there is a “waiting period” for people who have alcoholic liver disease to get listed. My question is even though my labs etc. will show my past alcohol usage will I have to wait to be listed? How do I prove I am not drinking and haven’t in months? I'm a changed person and I read more and more it’s important to get transplanted while still “healthy”.  I am jaundiced and have ascites. INR 4.3 - Bili - 15 Creatine .8 . Is it safe to wait or should I look elsewhere?

**My main question is are ther centers that will listed me immedialy? If so where? **
Thank you

[HectorSF]

Liver failure due to alcohol abuse is the second most common indication for liver transplantation in the United States. So your situation is not uncommon and is something many patients struggle with.

I understand more than you can imagine. My good friend who is supporting through my own liver disease and cancer issues went through what you are going through now. He ended up hospitalized, in and out of ICU was in a bind as he needed to show that he had stopped drinking and was in a recover program and would not drink again before they would list him. What he did was had AA meetings in his hospital room and reported all of his meetings and his progress overcoming his abuse of alcohol. Luckily with the help of his wife advocating for him, he was in time listed and received a transplant when he was on the verge of death. He had a ME:D score of 42 when he was transplanted.

One thing is clear, you will not be put on a waiting list because your blood levels are currently free from detection of alcohol. That is no indication that you or anybody else won't drink again. Any transplant center will tell you what you have to do to prove that you will not drink in the future because survival rates post transplant are very poor in those who return to drinking. I am not saying this is fair, I am just saying this is how the transplant centers look at it.

I understand about pain and suffering. Most of us transplant patients suffer physically and mentally for years before getting transplants due to the shortage of available organs. I decompensated in 2009 and have been waiting for a transplant ever since.

As you said policies at particular transplant centers vary. So I hope you find a way. In the meantime if I were you I would be documenting all of your AA meeting or whatever in order to prove that you have chanced.

We must all follow the rules of the system. For many it works out, unfortunately for others it doesn't. Many people die ever day waiting for transplants that don't come in time. This is the reality of advanced liver disease. None of us what to go through the complications of cirrhosis. It is a difficult process. I myself am now refused a transplant which is the only thing that will keep me alive. Am I content with possibly having to die soon? Of course not, but it is beyond my control. I am excluded for the same reason as you. We have a poor chance of survival even if we have a transplant. I have a MELD score of 34 so you might imagine I know personally what be excluded from transplant is about.

Best of luck.
Hector

[Advocate1955]

I'm sorry, but I don't have any other information about how T find a transplant center that does not require the six months' sobriety. You could try looking on the UNOS website, you could try posting on the Liver Transplant forum here on medhelp, or if you have no luck in this country, you might look into transplant options outside if the country. Again, because of the shortage of livers available for transplant, it's my understanding that approved transplant centers in the US must follow the guidelines. However, I am not an expert.
Advocate1955

[akoger05akog]

Thank you advocate1995 for your informative reply and Hector as well.
I understand where I stand and what caused all this. My issue is I need to find somewhere that will list me before 6 months ANYWHERE in the country. The six month rule is not a law but a guideline. It’s up the transplant team to see my case. I AM alcohol free I AM getting help to never relapse.
I am in a lot of pain, my ascites is out of control with weekly paracentesis. Even though doctors think I will improve during the “waiting period” that has not been the case. My MELD has been rising. My pain and discomfort is getting worse.
I’m not “shopping around” I need to find one of those “15 %” of transplant centers that apparently do NOT have a waiting period  when a person has truly stopped (which labs show) and is getting help.
I don’t want to go into failure and have my kidneys start weakening etc. I don’t even know if I can make it 6 months.
I screwed up . I’m sorry. I need a second chance. I am alcohol free, have been for months and will be. I need to find somewhere quick.

[HectorSF]

I would doubt that any transplant center will list you.
Most transplant centers want 6 months of sobriety at least.
Donor livers are not given to patients that haven't show that they will not drink again. A person who drinks will not be compliant and won't do all that is required to stay alive in the future. So it is considered a waste of a good liver that someone died to donate and that a compliant patients may live with for 10-20 years.

You need to ask the center what they require to proven you have stopped drinking and never will drink again.

With a MELD score of 33 you should be able to get a transplant soon in all but SF, NYC and LA.

Good luck getting a transplant.
Hector

[Advocate1955]

Hi,

I'm sorry to hear of your situation.  

With a MELD score of 33, you must be very ill.  I am hoping that Randy or HectorSF or one of the others who are more knowledgeable than I am about alcoholic liver disease will be on-line soon and may be better able to answer your main question.  I will tell you what I know, based on my limited knowledge of the process of being listed for a liver transplant.  

There are some national guidelines that every transplant center must follow, and then each transplant center may have their own criteria as well.  I live near the University of Washington Medical Center, which has a transplant center.  

My understanding is that it is a lengthy process that involves an initial appointment with a member of a transplant team (probably a transplant hepatologist) who reviews all of your history and your records, which must be sent ahead of time.  If he/she feels that you are in need of a transplant, which you are, then you will be sent for labwork and be given a list of other appointments, tests, and evaluations that may need to be done (possibly ultrasound, colonoscopy, endoscopy, dental work, X-rays, etc.).  These appointments need to be completed in order for the transplant team to know that you are otherwise healthy and a good candidate for a transplant.  If you have other significant health issues that might put you at risk for surviving the transplant, you may not be approved to be listed until those issues are resolved.  Of course, this all takes some time.  

After those appointments are completed, then you are required to take some classes and follow up appointments in the transplant center.  I believe that these classes are to inform you about the surgery (it's extensive) and the post transplant care (it's also extensive), nutrition, medications, etc.  This can take several days, full days.  I believe that you will also need to have a dedicated care provider, a spouse, friend, or family member, who will attend these classes as well.  This is because the transplant team must be sure that you are committed and your caregiver is committed to providing the proper amount of support and care that will be needed to survive the transplant and recovery period.  As I mentioned, there are national eligibility requirements that all transplant centers must follow, and within those guidelines there are some restrictions regarding BMI, age, general health, specific health conditions, as well as drug/alcohol use that may exclude patients from being listed.  Each center may have additional exclusionary criteria as well.  

To my understanding, one must be completely drug and alcohol free for 6 months before one can be considered for possible listing for transplant, but I could be wrong.  To my understanding transplant centers test and screen for non-compliance in this area and will not list a patient until they are confident that they are drug and alcohol free and have been for the period of time they require.

If I were you, I would start the process by locating the transplant center closest to you, request that copies of all of your records, including labs, imaging, and biopsy slides and reports be sent to that center, and schedule an appointment through the center.  They will have their own process that they follow.  Be honest about your alcohol use, because they will find out.  Start the process, which will take time anyway.  Get yourself established with them, and get to know every person that you come into contact with on that transplant team.  If you relapse with alcohol, ask them for help.  Since you have Cirrhosis and a high MELD score, you should be monitored by a hepatologist in a transplant center anyway.  A primary care physician or a gastroenterologist is not capable of taking proper care of you.  You need close monitoring for potentially life threatening complications (ascites, hepatic encephalopathy, variceal bleeds, liver failure, etc.) and careful management of any medications that you take.  No one can tell you if it's "safe" to wait, but I think you are going to find that you have no choice but to wait, because I'm pretty sure any transplant center will make you wait the required number of months to demonstrate no drugs/alcohol.  But if you start the process now, hopefully you will be able to complete the process before it's too late.

Since your MELD score is already 33, I'm sure you must already know:

No drugs/alcohol
No unnecessary medications without approval of hepatologist
Limit/no red meat
Limit/no iron rich foods
No iron supplements or vitamins with iron
Reduce sodium intake
Eat a healthy diet, fresh fruits/veggies, preferably organic
Eat small frequent meals rather than few large meals
Take all prescription medications on schedule
However, all of this must be done with the advice and direction of a qualified hepatologist.

Here are my opinions:
You really need a hepatologist to advise you because reducing sodium can be tricky.  You need help to manage your ascites (low sodium, diuretics), but it has to be managed properly.  You need to be monitored for hepatic encephalopathy and if you have it, it needs to be managed properly with diet and medications.  You also need to be monitored for portal hypertension to prevent bleeding or manage any varices that you may have already.  You also need to be screened regularly for liver cancer.

Just to clarify, I am not a doctor, so I can't give any medical advice, but based on what you've shared, I feel that you need to be seen by a hepatologist in a liver transplant center immediately.

Advocate1955