My borther's end stage Liver disease

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Helenaaz
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/31/2009 12:10 PM (GMT -7)   
Hi...I am new to this site and chatting. I need some feedback and reassurance that my brother has at least a few years left. He was diagnosed with HVC about 15 years ago. He hasn't had a drink since, he never was an alcoholic or anything like that, just had beer occasionally. He tried the interferon therapy and it seemed to be working for a little while then the virus came back. He pretty much lived in denial for 10 years but tried to eat a healthy diet. He was diagnosed with ESLD summer of 2008 when he had to be hospitalized with bleeding varices and ascites. At the time I thought I was going to loose him, but he bounced back. He is my last living relative. They managed to band 10 varices and remove 3 liters of fluid. He is in the hospital again because of the ascites. This time there was 4 litters removed and 2 days later the ascites is building up again. He hasn't been taking all of his medications because of financial restrictions. The only medication he was able to afford was the Lasix. To make a long story short he managed to get state subsidy insurance and will now be able to get all the meds necessary. The Dr said he is a good candidate for a transplant. My concern is the ascites and he told me today that his urine is a dark color. He said he still feels OK, the only time he has discomfort is when the ascites builds to the point that he is unable to eat. His diet is good. He is eating a vegetarian diet with limited animal product. Occasional yogurt and butter, mostly grains, beans and vegetables. I read other posts and it scares me. What can we expect once getting on the transplant list? What is the prognosis if he is lucky enough to receive a liver because of the virus? Taking suppresive meds for the transplant seems counteractive for the virus?
Thanks in advance for any and all advice and prayers offered.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/31/2009 3:08 PM (GMT -7)   
Hello Helen, I just want to welcome to HealingWell for now. I was just getting ready to walk out the door. Need to run some errands. I will post back later to you. We do have a lot of compassionate and knowledgeable members that should be of help to you and your brother.

See you later.........thoughts and prayers.............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2009 4:06 PM (GMT -7)   

Hi, Helen, and welcome to the forum!  I'm glad you found us!  If your brother has access to a computer and feels up to it, you might want to let him know about us, too.  I am sure we can offer you both support.  As to your medical questions, you have to realize we are not doctors.  Also, liver disease is such an individual thing, that it is impossible to know what the prognosis or future is for each one.  Everyone is different.

That being said, has his fluid intake been restricted due to the ascites?  If so, that could be the cause of his dark urine.  He doesn't sound end stage enough for his kidneys to be shutting down, although that's a possibility.  The doctors would realize that, though.  It sounds as though he may not be getting enough water.  I am very glad to hear that he will now be able to get his meds.  (Until I saw that he got a state subsidy, I was going to tell you that the doctor can write a letter to the pharmaceutical company(ies) letting them know that he needs that medication and cannot afford it.  They will then either send coupons to the doctor or patient for your brother to take to the drug store, or send the drugs directly to the doctor to be picked up by the patient.)  He needs to be religious in taking his meds.  It sometimes takes a long time to get ascites under control.  In other instances, patients have to be drained regularly until they get a new liver or die.

I had not heard that immunosuppressive drugs are not good for hep C.  In fact, hep C patients who receive liver transplants usually undergo hep C treatment then.  Otherwise, the new liver will fail from hep C in time.

Some people do very, very well after transplant and have many years ahead.  (My brother-in-law is 15 years post transplant and doing well, though it was touch-and-go for quite awhile after the transplant.)  Others, especially if the liver they received is not optimal, will not live long.  As I said previously, every case is different.

I suggest you read some of our educational threads for more information and understanding of liver disease.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helenaaz
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/31/2009 4:39 PM (GMT -7)   
Thanks hep93 for taking the time to respond. I know you are not doctors but after reading the many posts there was a lot of great information being shared. I wanted to be able to pass some of it to my brother to relieve some of the tension and fear I'm sure he is experiencing. I think my brother had been restricting his fluid intake the past 2 weeks. The dark urine is brown...not just dark. I haven't read anyone here discussing it. He is getting lots of fluid in the hospital. Hopefully that will help. They also gave him 4 units of plasma and 2 units of whole blood because his blood count is low. The Dr did an endoscope yesterday because he thought that perhaps he started another bleed. The scope turned up nothing. Tomorrow they are doing a colonoscopy to see if that may be the source of blood loss and low blood count.
He is getting the state insurance because he hasn't been able to work in a while so he doesn't have any insurance. We never heard of the coupons. I guess it would have been beneficial to find this site a little sooner.
Thanks for the hope, I will pass on the 15 year post transplant mark for your brother in law. Did he also have HVC? Had he failed the treatment for the virus prior to his liver failure?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2009 6:11 PM (GMT -7)   

Hi, Helen.  I hope we have been of some help.  I assume the doctor is aware of the concentrated urine?  If not, he should be informed of this. 

My brother-in-law had liver failure due to cirrhosis (which I believe was alcohol induced, but they live thousands of miles from me, and my sister never said when asked.)  I know he did not have hep C.

I was diagnosed with hep C in '93 and with liver cancer in '05.  Thanks to Mayo, I'm still here.  I take it you and your brother are in AZ.  I would recommend Mayo in Phoenix for a transplant.  I did not have one, but my experience with Mayo Jacksonville has been fantastic, and I know they have the shortest wait time for a liver.  They also have a charity fund which could cover all or part of his transplant.  Check it out.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Helenaaz
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/31/2009 6:45 PM (GMT -7)   
Thanks again, hep93 for taking the time. I have been reading all day and I'm overwhelmed. It's like a roller coaster...I wish it were more straight forward. There are so many variables and so many ways things could go either very fast or slowly. You are a special person to do this all the time, thank you.
I'll continue reading.
So you think that the brown urine is just concentration? and yes the Dr is aware.
We do live in AZ. My brother lives closer to Tucson than Phoenix and I guess they do transplants there too. I don't think Mayo takes the state funded insurance, but it's worth a check. I'm sorry if I seem a little cynical, it's just we have gone through so much this past year just trying to get approved for any care. The next hurdle will be SSI or is it SSD???

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2009 7:45 PM (GMT -7)   

Helen, I am glad you have been reading as there is so much info in all the posts.

Don't quote me, but I do think the concentrated urine is probably due to fluid restriction.  It should clear up in a couple of days if he is now getting more fluids.  If not, then something else is going on.  There's a possibility that the color could be from bleeding (kidney stones?)

No, Mayo doesn't take state funds nor Medicaid.  They do take Medicare.  But that is why I mentioned their charity fund, as I know some serious cases go there and are funded by the charity.  One has to apply and be recertified every year.

If your brother has a work history of at least 10 yrs. full time, he can get SSD.  SSI is for those who are ill but do not have enough credits to qualify for SSD.  SSD allows one to get Medicare.  There's a 2-year wait from the time of application.  SSI allows for Medicaid and that is immediate.  Sometimes you can get Medicare with some Medicaid financing, which is what I have.  Medicaid pays for my prescription drug plan monthly premiums and for my Medicare Part B premiums, which are considerable.  Part A is for the hospital and Part B is for doctor visits, etc., so it's important to have both.  Your brother should apply immediately or you can do it for him.  You can even apply online and then they will send paperwork to be completed.  It does not sound like he will be working for at least 12 months, which I believe is the criteria for SSI.  SSD is permanent disability.

I enjoy being of help here.  I feel if my experience and what I have learned can help someone else, then it serves a purpose.  And I'm at home most of the time, anyway.

Have a good evening!

 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/1/2009 1:24:13 PM (GMT-7)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/1/2009 7:54 AM (GMT -7)   
Hi Helen and welcome to Healingwell. I'm sorry I somehow missed your post yesterday. Regarding the dark urine, it is common for people with Hepatitis C and cirrhosis to have dark urine. My husband has experienced this for many years now. It is about the color of weak coffee. Sometimes the color is darker than other times. My husband also suffers from hep C and cirrhosis. He was diagnosed with hep C about 14 years ago and cirrhosis about 2 1/2 years ago. I understand what you mean about it being overwhelming. There are so many symptoms and complications that come along with cirrhosis. One can never really know what to expect. Knowledge is the only thing a person can arm themself with. I think you have realized what a wealth of knowledge and support everyone here has to offer. I'm so sorry that your brother suffers from this terrible disease. I am glad that you have found us. Everyone here has made dealing with this disease much easier for me.

I'll be praying for your brother.
Butterflythree
 
There is always hope!


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/1/2009 10:46 AM (GMT -7)   
Hi Helen,

Regarding the dark urine . . . Is your Brother jaundice by any chance? When an individual is jaundice (yellow), their unine is dark and their stool is light in color. Jaundice is caused by a back-up of bile in the liver. He should be taking antibiotics to prevent infection in the bile.

There are a number things that can cause the urine to be dark. It pays to learn the possible causes and to be vigilant.

Hope this helps.

Penny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/1/2009 1:26 PM (GMT -7)   

Just wanted to note that even though I have hep C and cirrhosis, I have never had dark urine.  It is usually pale yellow and clear, as I drink a lot of water and other liquids.  At times when I wasn't doing so, it would be a darker yellow.  Just another example of each person being different.  I have never been jaundiced or had pain, even when I had liver cancer...and believe me, I have a very low pain threshold.  smilewinkgrin

Helen, how is your brother doing now?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/3/2009 9:36 AM (GMT -7)   
Hello Helen, I am so sorry it has taken me so long to get back to you. I sure hope your brother's urine has clear up by now...........That was the only time my husband's urine got dark is when he wasn't drinking enough fluids.....which wasn't too often with him. ....I had to watch his fluid intake more often than not....he tended to drink more than he should.........

As you see my counter-part is very knowledgeable.........more so than me....her experience is priceless to this forum........mine is only by living and taking care of my husband through his journey............

How are you doing? I know that the stress that this puts on family members is sometimes overwhelming. Are you his main caretaker? Hang in there. It helped me to write down everything.........symptoms, questions, etc. I got to the point where it seemed like somedays I could not even remember my name much less all that needed to get done on a daily basis.

Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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