Cirrhosis Support Group

Symptoms and treatments vary from patient to patient, however not drinking and avoiding any kind of medicine or drug, except those prescribed by her doctors, with the knowledge and consent of the hepatologist, are the two main factors that might help improve her situation.
Also appropriate food intake, not only in regards of type of food, but amount and quantities, is a must.
There are lots of posts about diets on this group, specially by Craighome, you should check them out and go over those dietary suggestions with her doctor.
Good luck,

Musteac64,

It is my understanding that liver transplants are the second most common transplant surgery in the United States next to kidney transplants. It is also my understanding that liver transplant recipients have a very high survival rate, and many patients go on to live 5, 10, and even 15 years or more!

You, your daughter, and grandson remain in my steadfast prayers!

Jeff

There are many side effects of cirrhosis, some of which can be managed or treated, some of which cannot. The bruising and itching is common, bruising could be down to lack of vitamin K or portal hypertension, the itching could be as a result of high levels of bilirubin, or could be just itching!

I'm not sure quite what you mean by 'thinning' but I assume you mean loss of weight which can be treated using supplements.

The fact that she has already had a TIPS done suggests that she has been ill for some time now and if her husband died from cirrhosis, she should have a fairly good understanding of the ins and outs of the disease. It is a little bit surprising that she is only now going for a transplant evaluation.

Her TIPS an be fixed, it is not uncommon for them to get blocked.
Her prognosis of only a year to live is also surprising. Doctors rarely mention prognosis for cirrhosis as there are no known timescales unlike some cancers. There are statistics which will give an average life expectancy but statistics are just statistics.

Most people could probably write a book (including me) on their experiences with cirrhosis and they will all be different! It would be better if your daughter joined this site and had a direct dialogue with members here because then any advice given can be more targeted without having to write a new edition of War and Peace!! :-) Trying to communicate through third parties is difficult especially by typing.

I'm sure there are countless members here who would be more than happy to talk through stuff with your daughter on the phone if she thought it would help. But at a minimum I would suggest she joins DS and fills out her profile about her current condition and the meds she is currently taking. That gives us all a good starting point to help her if we can.

I hope this response helps.

Craig

musteac64,

I completely agree with Craig that the most effective communication would result by having your daughter join this support group. There are many people here that would love to provide her the support that she needs.

However, I also believe that dealing with any type of disease like cirrhosis is equally emotionally challenging for the loved ones of a person who has been diagnosed. So if your participation in this support group helps to address your needs, your continued participation is always welcome as well.

As you can tell, Craig is probably the most knowledgeable one here and has been very instrumental in keeping this support group going when other members are unable to participate from week to week because of various reasons (e.g. life experiences, responsibilities, or when people just need a break from being on the internet).

Interestingly, Craig had also posted a thread not too long ago, explaining how nice it would be to hear back from some of the members here that have received transplants that could better answer some of the questions you have. Perhaps you could post some of your questions under this topic titled, “Transplants Etc”, with the hope that some of these members will respond.

I realize how hard all of this must be for you. If it were my daughter, I too would want to know everything that there is to know about this disease. I hope the other members here will be able to continue answering some of your questions.

I also understand how concerned you must also be for your grandson. It sounds like he has already been through so much with him losing his father. He too, is so very much in my prayers!

Jeff

"thinning and itchy skin" mentioned above..the thinning I believe she is talking about is when the skin gets very thin and fragil,this is common in the elderly. The skin gets to be paper thin,so thin that a simple bump against something,ie,doorway,even turning in one's bed,can tear the skin. Even the adhesive on a bandages will rip the skin off if you try to remove one. Hubby has had this condition and the doctors prescribed Cholestyramin powder(mixed with juice). It worked well for another gentleman on this site,hubby refused to take it because it was gritty.

I would like to say thanks to all who responded to my posting about my daughter. I have suggested to my daughter that she connect with this support group. She promised me that she would.
She gets very depressed at times and for the past year up until this past visit in October with her communication was strand. On this past visit we sat down as a family and was very confrontive with her in that we were committed in helping her use every resource available to set her on a path for recovery. She committed to going to counseling to help in coping with her illness.
Due to the fact that she was released from her employment last January, 2009 that brought her insurance coverage to a halt and only had her son's social security and unemployment as her financial means and it took forever to get her
receiving medicaid to help with medical and medicine bills - all of this was very overwhelming for her. And in addition to all this she fell and broke her ankle in May which really set her back.
At our last visit we helped her get the medicaid operating correctly, apply for disability and helped her realize that we are there for her.
Emotionally and physically this has been an uphill battle for her.
We talk everyday; always keeping to the positive.

To answer the question why she is just being evaluated for a liver transplant: all I can say is that last August, 2008 her meld number was not high enough to put on the list. That when the doctor recommended the TIPS procedure. To my knowledge nothing was spoken of in regard to correcting it malfunction since we were down in October. I don't know what her meld number is now. I will
make sure she finds out.

On the subject of the medical bills - what have any of you experienced with being on medicaid in regard to receiving a liver transplant?

I have to say she is not drinking at all for since our family meeting we stressed to her that her refraining from this was paramont in her being put on the list. Our grandson was a part of this meeting and he supported us in all that we talked to her about. Since that meeting her behavior has changed for the better. She is in counseling. Our conversations now are real and honestly between all is utmost exhibited.

Her appointment with the liver transplant is on November 17th. Continue to pray for her.

Thanks to all for your information, encouragement, prayers and support.

God bless you and all your family involved in this ordeal. It is a tough road to travel as I have no words of wisdom except to try to stay positive. YOu will have days that you need a pity party and its alright to get it over with and start back fighting again.

If your daughter smokes, she will need to be nicotine free for six months before they will place her on a list. At least, that is what we have been told by several places. And, they will do blood work to be sure you are not just saying you are not smoking. You have your hands full and I am not going to burden you with my family story right now.

Depending on what part of FL she lives in, there are numerous hospitals there that do transplant surgery and not like where many of us are where there ix only one or two within a 3 hr drive.

FL Hospital in Orlando does some transplants, Shands Teaching Hospital in Gainesville does livers and I know there are several others in the Orlando area. Mayo in Jax.

I wish your daughter the best and your family as well. Please remember to care for yourself as you won't be much help for her if you get sick by over doing things.

And please let us know how things are going.

My daughter is living in Orlando and she will be seeing the doctors at FL hospital. She does not smoke thank goodness. That is a plus.

I did some research on hospitals in VA since that is where we live.
I am very impressed with VCUHealth Center in Richmond. We will see how things progress in FL for her in regards to the liver transplant team there. I have talked to VCUHealth Center regarding the possibility of her transferring there after she gets on the list. They were very helpful to me. The Center also has a living donor program there as well.

Also we are only 50 miles from Duke University Medical Center and I just met someone who had their liver transplant there.

We continue to pray for wisdom in seeking God's best for her. Thanks for responding.