Bipolar = No Liver Transplant?

My brother, age 51, contacted Hep C 30 years ago but only found out 10 years ago. 3 years ago he was sent to a hepatologist and cirrhosis was confirmed but my brother continued to drink and do drugs instead of take the disease in hand and slow the progression down. Now he is suffering violently with severe edema in the legs/ankles; ascites (which was drained two weeks ago) and soon will need to be again; up until yesterday he had not slept for 3 weeks straight; 2 months ago he had to have an emergency surgery due to an umbilical hernia; he has been in the hospital 4 times in the last month. His meds include 40 mg  2x day of lasix, 100 mg 2x day of spironolactone, lactulose, and 30 mg every 4 hours of morphine. After the umbilical surgery, he started to see a hepatologist who said that he probably would not pass the psychology test in order to be considered a candidate on a liver transplant list. Has anyone heard of this reason? Also, has anyone who is reading this post ever known someone to continue long-term with the brief conditions I've given? What is the best help I can give to him right now as I am the only person involved with his care 24/7. He needs assisted living as his care is progressively requiring more than I am capable of providing. The hepatologist just took this case 2 weeks ago and is only beginning ordering tests. My brother had a doppler done on his legs last week and will have an echogram next week, but then the hepatologist will be on vacation so we will not know results for many weeks to come. Because of this delay on staging his disease from the specialist and no primary care giver on board yet, I can not request hospice to assist in managing his comfort. Any suggestions?

[spectda]

I am very sorry to hear of your brother's condition. He is lucky to have you at his side. I am not sure I have any good answers for you, although others on the forum certainly might.

I assume that a hepatologist has coverage when on vacation for seriously ill people. Have you already spoken with the doctor or whoever is covering for the doctor about the hospice situation? Is the doctor already on vacation. Does the doctor recommend hospice care at this point?

I don't know your financial or insurance situation, but perhaps in home or hospital care is available to you if necessary to manage his comfort.  

Hopefully someone more knowledgeable about advanced disease will be able to help you,

Good luck,
- Dave

[Diane12855]

I don't have any info for you either but to say that I feel for you. It is really hard to be a 24/7 caregiver.

Has he finally stopped drinking? The fact that he continued to drink after knowing the condition of his liver may be what the hepatologist was talking about when mentioning transplant possibilities. There are so many people waiting for healthy livers that they can't take a chance on giving someone a new liver if they aren't going to take care of it once they get it.

Hang in there,
Diane

[fretboard]

I am really very sorry to hear about your brother.  That said, liver transplants are extremely difficult to get and not everybody who needs one will be able to get one.  That's the way it works.  I am a bit confused about the bigger picture tho'.  I also have a brother who is a bi-polar alcoholic but neither one of us are unclear about his future.  My brother is not HepC positive and is not cirrhotic tho.

After your brother had the process to remove the ascites from his belly didn't the doctor explain his future?  

Is he still drinking or does your 24/7 care stop him?

I am sorry to be so blunt but I also have a sister who is an alcoholic and is having trouble with gall stones.  I also have a very good friend who has ascites and continues to drink.  

[HectorSF]

I am sorry you are stuck in the middle of this. It is a very, very difficult and painful position to be in. No one person can be a caregiver 24/7. It will destroy your physical and mental health over time. Depending on the insurance he has you should try to get some outside help with this. If he ends up in hospice that is one way you can be relieved.

The best think you can do for him is to love him and remember it is the drink and drugs that are controlling him now. But don't let him manipulate you into doing anything you will regret in the future. Don't enable his drinking in any way. You need to be at peace with yourself no matter what happens. Easy to say but hard to do.

If your brother stops drinking and drugging his condition could stabilize to some degree. How much, I can't say as I don't know his true condition. But his substance abuse is like pouring gas on a fire. It overrides how much the meds can help him. They will probably help when he is in the hospital away for the drugs but once he starts drinking and drugging again the meds will become ineffective even if he continues to take them.

I have experienced all of the complications of cirrhosis you mention that your brother is experiencing. But with similar meds and living a healthy lifestyle I still have probably a few more years to live before I'll need a transplant to continue living. So it is possible to continue to live a limited, but good happy life if he takes care of himself.

Do you know his MELD score? You should ask his doctor. That is a number calculated from 3 of his blood levels. It will tell you have ill he is and about how long he will be able to live without a transplant.

Yes people can be keep off of the transplant list if the transplant center people don't believe he will take care of a new liver. There is a huge waiting line in this country for livers. Many people die every year waiting for a new liver. The transplant center would rather give it to someone who has a better chance of surviving in the long run then someone they believe may go back to drinking and drugging. Receiving a new liver is a sacred thing. Some person who died was generous enough to give their liver so someone else can live. If your brother continues drinking and drugging and doesn't take his post transplant meds he will kill the new liver in a short amount of time and someone else who was waiting for that liver may die. This is serious business.

I believe the reason they may denying him a listing is the alcohol and drug taking. (Remember the hepatologist said "probably") Unfortunately this is very common. People would rather die then stop their addictive behavior. As for the bipolar illness, he can take meds to manage that.

If he really wants to live there are things you can do. But in the end it is up to him. Only he can save himself. He can have AA and NA having meetings in his hospital room to show he is changing his ways. He needs to pull himself together. He MUST be compliant with whatever the transplant people tell him. If he is argumentative and hostile and many alcoholics and drug addicts are, he will pay for it with his life.

It is really up to your brother to change his way of living after I would guess decades of abuse. This is no easy task. But I have seen people do it.

Do you understand what will happen if he continues his current behavior? If you want to know more info and details just let us know. It my help you prepare when the time comes.

Please take care of yourself first.

I wish you all the best.
Hectorsf

[Firefly53]

Dave,

Thank you for your kind remarks and concern!

There are two other hepatologists in the office who will be covering while my brother's is on vacation - but emergency status only. I'll find out sometime next week whether or not Hospice can be called upon now or if it is a future option.  We have an appointment next Friday and then the doctor goes on vacation. Who knows how long it will be before the doctor comes to a conclusion regarding the current damage and future condition of the disease. i'll keep you posted.

I hope you are doing well - take care!

[Firefly53]

Thank you so much for responding to my cry! This is so hard to go through and I appreciate your understanding and advice.

My brother is currently not drinking, and I am not sure how long it has been since he's stopped. I do know its been at least 2 months which is not that long and has been on the morphine for two months, so I do not know if there is an exchange in chemical dependancy going on. I do trust the doctors' perscription regiment aqnd will not allow my brother to reside here should he decide to drink.

The good news is is that my 29 year old daughter is coming on Sunday and staying here to help out. I am so glad!!!

Thanks and God's blessing to everyone who will watch for and accept them,
Beverly

[Firefly53]

Your response was greatly appreciated, as were the others. I am sorry that you have gone through so much and it is advantageous to hear from someone who knows what my brother is going through.

One question I have for you is in regards to your statement "Do you understand what will happen if he continues his current behavior? If you want to know more info and details just let us know. It my help you prepare when the time comes." Well, I guess I don't know enogh about what to expect, so yes, please, let me know.

Thanks ever so much and take care,
Beverly

[orphanedhawk]

My guess is your brother's dependence on morphine is his main obstacle in getting a transplant.
First of all since there are more people waiting for transplants than livers available, they are given to those in the direst need who are also most likely to survive and take good care of the new liver.

This is just my guess but I had a transplant and was put onto morphine. I can say I didn't have any pain but I did have surgical psychosis. I can't imagine a transplant being done on anyone dependent on  opiates or already with severe mental problems, but I am not a doctor.

For your brother's health, he should be on a low ( as close to no) salt diet, not eat red meat and avoid processed food.

I'm glad your daughter is coming to help. Please take the time to care for yourself.
Good luck,
OH