liver (shut down)

[help4mymom]

HI, my mom went to the doctor day before yesterday (ER) and the doctor told her she was dying. They said her liver has shut down. her eyes are really yellow, her legs are swollen with water. She also has hepititis C. Shes on methatdone and the doctors frowned on that. Why? that has helped my mom for years. I heard about something called TIPS can this help my mom? Can she do any thing to help her liver (herbs)? We havnt even had a second opinion yet.My mom has little income and is on medical, she feals the doctors treat her differently because of this. Please help me, I dont want my mom to die. It has been hard for me cause my 10 year old daughter is really close to her as well as I. they gave her diuretics and atibiotics water pills and sent her home to die.  She is in a lot of pain, and now she cant urinate, but they gave her a medication that made her go at the hospital. My mom told them that she was really deppressed by missing her grandsons 1st birthday on may 30th and she had a drink, but i know my mom hasnt had a drink in years. How come they cant consider her for a transplant. I know my mom wants to live. How long does she have to live? Is this liver failure, I dont know the difference. With the way the doctor broke this news to our family, its taring me apart. I cant sleep at night. kaisar didnt even put us in touch with a support group. I have so many questions.

[GrandmaA]

I'm so sorry to hear about your mother's liver shut down, pain and anguish. She must not drink any alcohol because it is poison for patients with hep. C. Putting fuel on the fire. There are wonderful herbs but they are costly. I take them and I'm on tx.  Check out Dr. Zhang's website sinmedresearch.org. I took them before tx also but 2 are different and 2 are the same. I'm only take 3 now. They keep your liver disease from progressing.

We are all going to die of something some day, even if we want to live. I lost my dearest parent (my father) when I was only 32 years old. If the Lord decides to take your mother her pain will be gone and that will be a good thing. Until then, keep her comfortable and be strong for you, your daughter and your mother.

When I was thinking about treatment Dr. Cecil said if you want to live another 20 years you better treat. I'm 65. The hepatologists usually know where the hep. C support groups are, call their office. You can get a second opinion also. Tell your mother drinking alcohol will hasten her departure.    

[mikesimon]

First I want to tell you how sorry I am that you and your Mom are in this situation. I will try to answer your questions in order.
1)Her yellow eyes and swollen legs are a result of liver disease. The yellow is called "jaundice" and is caused by bile accumulation (build up) in the blood and is often seen in advanced liver disease.
2)I don't know for certain why the doctors frowned at the mention of methadone but  that is not an appropriate response. I personally know a man who got a liver transplant in 2000 while he was taking methadone. He is still alive and he cleared his hepatitis C while on methadone after his transplant. He is still on methadone and is doing well.
3)TIPS stands for Transjugular Intrahepatic Portosystemic Shunt. This is a complicated topic but to put it simply it is a procedure which reduces pressure in the vein supplying blood to the liver. It does ease some of the problems which result from advanced liver disease such as the pressure in the portal vein (the vein which supplies blood to the liver), fuid build up in the stomach and sometimes kidney problems by increasing blood flow to the kidneys. It does not improver liver function - it is a temporary approach to buy some time so hopefully the patient can get a liver transplant.
4)I don't know enough about herbs but my feeling is that herbs will not do much to improve your Mom's condition. She is too advanced for herbs to really be of benefit.
5)Drinking any alcohol is not a good thing for your Mom.

She must be seen by a liver specialist and if there is a transplant center nearby I would try to get her seen there as soon as possible. They will evaluate her and give you a better idea of her condition, her options and her prognosis. If she qualifies for a transplant she will be listed and under the care of the transplant center until a liver becomes available.

I wish you good luck. I know this is a hard road to travel but people do travel it ands get through it so you are not alone. Just get to work on getting your Mom help.

Mike

[Bill1954]

I see you mention Kaiser. Can you tell me where you are located? While methadone use is controversial among some doctors, recent evidence suggests that methadone maintenance is not an absolute contraindication for disease management, and apparently transplant, according to Mikesimon. Kaiser has a decent reputation for well-care, but are considered by most to be ‘conservative’ in the acute care field (I’m trying to choose my words carefully here). Based on the information you have provided, she should be seen by a transplant center ASAP. If you’re here on the west coast, let us know, and we might be able to help with some ideas.

Good luck, and stay in touch—

Bill

[Susie2007]

I'm so sorry to hear your sad news. I want to ditto everything Mike has said to you. He is correct on all counts. Please do NOT give your mom any herbal supplements. It does not slow the progression of the disease and in her state of health, it could be very harmful.

Get on the phone today and call UNOS (United Network for Organ Sharing) and see if they can guide you. This is the toll-free number for patient services    [phone].

[jmjm530]

Very sorry about your mom. Don't give up just because her doctors have. See if you can make an appointment at the nearest transplant center. Maybe a new team of doctors will offer more hope.

All the best,

-- Jim

[Myown]

So very sorry to hear this. This is so sad, my heart is breaking for you and your mom. I'm glad that there are those on forum that are able to answer your questions and give give advice.

I will be praying for you and your mom as I know many others on forum will be also. Try to hold on. Please tell your mom that there are people at MH praying for her.

[illo]

Yes, contact Dr Zhang.  Very helpful with chinese herbs, and he has a proven track record.  He is also a Western MD.  He'll work with you over the phone.

New York City:
ZHANG CLINIC
420 Lexington Avenue, Graybar Building
Suite 631
New York,  NY 10170
Tel: [phone]
Fax: [phone]

[timlotus]

I am so sorry too about your mother's illness and would like to add to the prayers and good wishes others have offered.

I am an addictions specialist in the UK and I would like to echo what others have said: methadone should NOT be a bar to her receiving treatment in any way.

I sincerely hope your mother gets the care she needs and that you find a way of coping with this difficult time.

Tim

[BThompson4]

Please do not waste any time pursuing homeopathic treatments.  That is a ridiculous and possibly dangerous path for someone who has advanced liver disease, as it sounds like your mother is extremely ill and in late stages of liver disease and and that any herbs or whatever would be totally useless anyway.  

From what your describe, a transplant center sounds like her only option.  Getting a liver requires lots of jumping through hoops, and the sooner you start, the better.

[illo]

Please don't show your ignorance.  Dr Zhang does not use hoemopathic tx, and as he is a regular MD also, he will guide her to a transplant if she needs one.  Please gain more knowledge about the different healing modalities before giving advice.  Or say nothing.

[BThompson4]

Her mother sounds like she has esld.  Please point out Dr. Zhang's patients who have survived esld without a transplant.

[illo]

I guess you're an MD?  Why is she even here, then?  He would tell her herbs wouldn't help.  Not everyone is ignorant.

[BThompson4]

From Dr Zhang's website: "Zhang's Clinic is a Chinese medicine and acupuncture clinic.  We focus on using high-potency Chinese herbal remedies for regulating the patient 's health and well-being."

His methods may be great for people in earlier stages of hep c and for people who are not very ill.  Look at the horrible symptoms this woman has: jaundiced, swollen legs, hep c, can't urinate, told flat out by a physician that her liver is shutting down and that she is dying.

The last thing she needs is to have her diet tweaked by some trendy Manhattan doctor whose patients are probably rich non-conformists who have never been sick a day in their life and who see themselves as too hip to acknowledge the utility of conventional medicine.  I'm not a doctor, but I have had end stage liver disease and seen a number of people die from it.  Liver transplant is the only cure for it.  Getting a liver is a very unwieldy, usually lengthy and even arbitrary and quirky (despite the fact that it is a life and death situation) process.  I don't think it is appropriate given her dire situation to be consulting a herbalist in Manhattan of all places (doesn't sound very convenient or affordable) when the overwhelming majority of evidence suggests that only a liver transplant could save this woman's life.

[help4mymom]

I just want to start with thank you all so very much for responding to the e mail and talking with me about this. Second Im sorry it took so long to get bck to you all, my mom has made an appointment for tues. to see a liver spcial. one that she acually used to see in the past, ( but had to stop due to medical) she still remembers my mom and wants to help her. i guess she specializes in patients that have hep c and liver problems. Alot of people from my moms methadone clinic go to her. Im able to breathe alittle. My mom also has been taken a product called Reliv, I dont know if any of you know what that is, but it helps her go to the bathroom. smile....  my family and friends including all of you have been reaching out in numbers with this and i really appreciate that. I keep her legs elevated and make her drink lots of water.  Can any of you let me know if you know of any thing that will make a person urinate alot?  I moved my mom in with me ,thats the only way i am able to sleep at night, is when ever i feel scared ,i can get up and check on her and look at her sleep. My daughter rubs her legs. She went to see my daughter collect her trophy for honor roll the other day (she was proud).  

I want to let all of you know that, I am looking into all avenues of my mom getting better (herbs).....ect.

she's doing ok as of now

I'll keep you posted

P.S.
And thanks to the person that sent me the 800 # for the liver transplant center.

[help4mymom]

Sorry there's a couple of things i forgot to ask and my mom wanted to know some things too.  B thomas mentioned esld, what is that? Also my mom wants to know if she should be drinking so much fliud? she's worried that the fluid is seeping through her skin, can this happen? I know to avoid salt but what kind of foods should she be eating for this condition. Im still very scared for my mom.  But I still really dont know what im doing, at home to help her situation.....


Also I wanted to let you all know Im in the Bay Area and if theres any contacts you know out this way please let me know.  thanks again.

[Bill1954]

OK,

If you’re located in the SF bay area, try California Pacific Medical Center (CPMC). This is a cutting-edge Hepatology and liver transplant clinic, with doctors that are generally highly regarded among their peers. The number for the Hepatology dept [phone], for transplant try [phone].

ESLD is an acronym for End Stage Liver Disease. BThompson4 gave you solid advice regarding herbal remedies, in my opinion. This is NOT the time to take medical maters into your own hands with unknown, unproven substances. Based on the information you’ve provided, your Mom needs to be seen by a *qualified* medical professional as soon as possible. Consider herbal remedies with the doctors approval only. There may be some dietary guidelines that will help your Mom, but I’m hesitant to list them on the internet. Again, discuss anything and everything that goes into your Mom’s body with her physician. You might consider beginning a log to track your Mom’s food and water intake, with emphasis on liquid and protein intake, until she has been seen by her doc. Until then, feed her with moderation.

Take good care,

Bill

(I’ll re-post this on your original thread as well:)

http://www.medhelp.org/forums/hepatitis/wwwboard.html

[jessiejane]

Hi there
Hope all goes well with your mom on tuesday, my mum had chronic liver disease caused by alcohol but left it to late to get help, by the time we got her to hospital she had all of the symtoms which then led to coma and unfortunatley passing away, I feel if she had got help earlier she would still be here today, I feel that in the uk if you go to hospital with a disease like this you are frowned upon and at the end of the day it was a disease. I wish you and your mom all the best. Stay strong and im sure everything will be ok for your mom with the medical help she requires. Thinking of you both.

[kimmyhelpmymum]

hey im only 15 years old the doctor told my mum her liver is at 600 when its suppose to be at 41 now that was a month ago she still drinking shes drinking at this moment we have put her in rehab, doctors and all, shes got the worst depression ever. her face is strting to go a funny coloured yellow, she has a serious condition of anorexia. no one will help me. the doctors wont help.
im scareed im crying even writting this i know theres more serious cases of it so i feel bad for crying cuz there people parent and family members and friendds dying right now. but this is hard. i don't have my dad anymore. i dont have anyone. im in a serious relationship with my boyfriend he helps. but my mum told me before that shes left me lots of money i told her i odnt want money i want her she just doesnt get it i jsut need so q's answered so what does the 600 stand for hats it represent
thankyou.
and im sorry for ure lose.
adn everyone elses

[fretboard]

I am terribly saddend to read your story about your Mother.  I too am on methadone, prescribed for arthritis and there is a huge stigma with being on methadone.  It's unfortunate but it's true, I was recently told that I wouldn't be accepted for tx in a telaprevir study because of it.  I run into doctors all the time who frown and try to talk down to me because I'm on methadone, I even had one ask me why I wasn't on oxycontin.  Anyways, I'm terribly sorry for your situation however I can only offer you the facts as they have happened in my personal life.  When I was on MediCal, I was definitely treated differently than I am now.  Currently I have Blue XXXXX insurance and I have a job, but there was a time in my life when I didn't and I was on MediCal.  Not only was I treated differently by doctors but I was also given substandard care by dentists.  I'm gonna leave you with a link, if you live in California you may be able to get some help either at Stanford University or at UC Davis in Sacramento.  The article I'm leaving you with was performed at UC Davis and I think that the person who had the transplant was on methadone maintenance, but it's been awhile since I've read it.  Still it gives you insight into the perception of the medical field as a whole, even though it's a couple of years old. Good luck in your journey for assistance and I hope you can find some help for your Mother.  God Bless

http://substanceabusepolicy.com/content/2/1/5

[redrodeo]

I can't believe the manner in which they seemed to treat you. That just p*****s me off.
It sounds like you are getting pro active which is the way to go.
One thing I wanted to mention which is important in getting the swelling down is the legs
must be elevated at least 30 degrees above her heart. Lying flat won't help as much. Any doctor should be willing to give a prescription for a inexpensive diuretic. Like LASIX at least would make her more comfortable.
I raise a 15 yo boy and would hate to leave him out here alone. You can come live her in Texas.
     Chris

[alagirl]

I just realized we have two different people here with mothers who have end stage liver disease.  Its just that their screen names are very similar.

kimmy, who else do you live with?  Is your mom in the house with you and do you have a father at home?  What is her condition presently?  What part of the country do the two of you live in or do you live in the U.S.?

[nanabandm]

I'm so sorry to read your sad stories, particularly worried about Kimmy at 15, alone going through this. My husband hasn't got long and seems to get weaker every day. But I have family round me and the NHS in the UK so hospital care is free (well, it's not as we pay contributions from our taxes etc, but you know what I mean), and although the docs and nurses were very good to him in hospital, there was a difference in attitude due him being there for alcoholic liver disease. I'm worried about you darling. What support do you have round you apart from your boyfriend? 15 isn't the age for serious relationships, however committed he may seem and I'm sure he is, but sh** happens and he may have another agenda. Be careful that's all and see what sort of support you can get from social services (that's what they call it in the UK - not sure about the US). You should be enjoying your life at 15 not going through this. But it WILL make you stronger for later in your life, which is no comfort at all right now I'm sure. Please don't be afraid to ask the authorities for help if you can't cope. There must be someone in your orbit who can support you at this time? Please let us all know how you are managing. Bless you. nanaxxx

[Andromedae]

I just wanted to offer my sympathies as well for your mother and for your pain.  I wish I had something better to offer you but all I have is my sincerest wish that if miracles do exist in this world then one comes by your way.

Andromeda

[Mary4now]

WOW, I am just getting ready to go to bed, and read this.
I see you have gotten alot of good advise.. I am so sorry you have to go through this.  Please also take some care for yourself when you can.  It pains me to see how much suffering there is in this world.  Please just take it one step at a time go through it and just do the best you can.  Sounds simple i know, but also know that you are in our thoughts.  XX OO M