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A fixer who can't fix
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A fixer who can't fix

My sister recently told our family that she has stage 4 hep c. She is the mother of 4 children 2 under the age of 10. She told us after her stomach swelled so that she looked pregnant and she was having chronic bloody stools and felt she had no choice but tell her secret. She has never had any treatment and is constantly telling me there is nothing they can do. Since finding out about this I have researched endlessly and feel confident that there is some treatment that could still help her at this point. I also learned about live liver donation which I would definately do. We saw a gastroenterologist today who has ordered a colon test and endoscopy to be performed next week. Her blood work came back with her white blood cell count low. I guess what I am asking is if there is treatment at this stage or is transplant the only option? She has also began having trouble swallowing food and feels like it is getting caught in her throat. Is this something anyone else has experienced? I am one who always wants to run in and fix things and am having a difficult time knowing that I cant fix this. I have been in between tears, anger, fear and obsessive researching for weeks now. Any suggestions would be wonderful!
16 Comments Post a Comment
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Avatar_m_tn
Sorry about your sister... If she is in ESLD then her only option would be a Transplant. A living donor would be great...... We have a member here that had one and then was able to treat and cure herself. I am sure she would be happy to answer any questions you might have. Her Nic here is Orphanedhawk................... Best to you both.
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Avatar_f_tn
I am not an expert, bit it sounds lime your sis has Cirrhosis (severe scarring on her liver), and it sounds like her liver is no longer functioning well (beginning to fail), as indicated by her bleeding and swollen abdomen. How is her mental state? Any confusion? Disorientation? Forgetfulness? With these three symptoms (bleeding, swelling, and low platelets), her cirrhosis is too far progressed to treat her Hep C, as the current meds would be too hard on her damaged liver. She should be seen by a hepatologist as soon as possible. A hepatologist can treat her symptoms and hopefully stabilize her so she doesn't have any life threatening events. She needs medication for the fluid retention, and treatment for the bleeding. A hepatologist will be able to assess her to see if she meets the criteria for a transplant. Some centers do live liver transplants, so maybe you will be able to do that. Again, she needs to be seen and treated by a hepatologist as soon as possible, and I would recommend that it be a hepatologist at a liver transplant center, usually located at a university medical center.
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Avatar_f_tn
Sorry: "like" not "lime".
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Avatar_f_tn
Thanks for the reply. She does have some confusion and mood swings that are going on. The gastroenterologist we saw yesterday is one of the top in our state (VA) and I am hoping that after the two tests next tuesday he will refer her to a hepatologist. She is very frightened about having a biopsy done due to hearing that it is very painful. I hope that the doctor can convince her to have this done. She tries to pretend that this isnt happening and gets very defensive when you try to tell her what is going on with her body. I have spent alot of time reading up and she hasnt spent any. I try to tell her what the symptoms are such as the fluid in her stomach and the rectal bleeding and she blames it on a virus or some other infection. She is just now beginning to realize and confirm how sick she really is. I just hope and pray that the doctors can do something to help ease some of her symptoms so that she is not so miserable. It is really difficult to watch her go through all of this and very frustrating when I feel so helpless.
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Avatar_f_tn
Yes, please ask the gastro to refer her to a hepatologist in a liver transplant center. It is the only place she can get the help she needs. Her mental.confusion is called Hepatic Encephalopathy and it is a symptom of End Stage Liver Disease. The fluid is called Ascites, another symptom of ESLD. The bleeding is due to portal hypertension, another symptom of ESLD.
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1840891_tn?1383280315
Do everything within your power to go with her to see the gastroenterologist. Your sister probably doesn't even know what kinds of questions to ask and may be too mentally fuzzy from the illness to remember what the doctor does tell her. Attitude sometimes makes a huge difference in how doctors treat patients with life-threatening diseases too. Your sister may convey the message of being hopeless and thus unlikely to fully comply with treatment, which in turn can discourage doctors from trying very hard. If you are there with her, and with questions and a notepad for answers and other notes, your sister is far more likely to get the best treatment and also to be able to interpret and remember what the doctor says. You have taken on the job of being her advocate by doing the research, and I hope she will let you carry through on that by accompanying her to her doctor appointments. Most of us who get to advanced stages of this illness do need some help in the form of a companion/advocate at doctor visits. My illness is less advanced than your sister's but I still have found it invaluable to have my husband accompany me. I don't even have HE, but I still find he helps a lot with remembering things I've forgotten.

Do try to take along a notepad (with questions) and a pen to take notes. Some gastroenterologists are great, others are not all that knowledgable about treating this virus, much less the probable cirrhosis and possible ESLD your sister has. Be direct and ask for a referral to a hepatologist at a liver transplant center. It will save time in getting her the best treatment.

Please reassure her that for most people the liver biopsy is not terribly painful. Many people on this forum say theirs was a piece of cake. Mine was actually somewhat painful but the pain was over so fast it barely had time to register. I'm NOT really tough about that sort of thing, and yet I wouldn't be very concerned about it if my doctor wanted to do another one. It was just so fast it hardly counted as pain. Also my doctor allowed my husband to stand by my head and hold my hand while it was done (that says a lot about how scared I was beforehand).

Bless you for being so loving and generous with your sister!
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Avatar_f_tn
Thank you all for your replies. I am going with her on Tuesday for the tests they are going to run. You all have made me feel so much better. I think the people who are supporting the ones who are sick need alot of support as well so I am thankful I found this forum where I can get some of my own frustration out. Thank you all and I will say a prayer for each of you.
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Avatar_f_tn
Agree with ceanothus regarding biopsy. Minimally painful and minimally risky, but very critical piece of info for your sis at this time. For her, it will be nothing more than getting an IV line, going to sleep, and then dozing for a few hours, going home and napping the rest of the day. For you it will be stressful, but take some snacks, a good book, and your iPod. Bless u for being there for your sis.
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180992_tn?1383377657
Orphanedhawk would be the person who could advise you.  I know she had her live donor transplant done in Thailand.  She posted a couple of weeks ago she was taking a break from Medhelp for awhile.  I just sent her note to look at this thread.
So sorry about your sister.  I want to also applaud you on offering half yours.  It does grow back and saves her life.  Bless you!
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3122657_tn?1357436202
Best of luck to both you and your sister you seem to love her very much to give half your liver i would do the  same for my sister without a question just keep fighting and dont let her give up

Best of luck to you and your sister
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163305_tn?1333672171
I had a live liver transplant with my daughter as my donor in Taiwan.
It's a wonderful way to go.
First find out if you are compatable. The very first thing would be to check your blood types.

I don't have internet hooked up at my new house yet so I'm writing at the library and have to run.
I'll check back in a few days.
Don't lose hope, do look into this wonderful option and learn all you can, NOW !

Wishing you both the best,
OH
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163305_tn?1333672171
I'd like to make a comment regarding the biopsy. My understanding is when the liver is already in such a deteriorated condition, biopsies are not advised. For that matter, when you already have the signs of ESLD, like ascites and HE, there is no reason to do a biopsy. It's already known that the person has decompensated cirrhosis.

I say this because I never had a biopsy, nor was one recommended until after my transplant. A liver with decompensated cirrhosis doesn't need any invasive procedures.

I do suggest that this person should be seeing a hepatologist experienced with liver transplants and not just a GI.


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Avatar_m_tn
"My understanding is when the liver is already in such a deteriorated condition, biopsies are not advised. For that matter, when you already have the signs of ESLD, like ascites and HE, there is no reason to do a biopsy. It's already known that the person has decompensated cirrhosis."

Totally agree with this statement, what would be the purpose?
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Avatar_m_tn
To add with what I just posted, one would think her platelets are low, adds to the risk of a biospy.......
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Avatar_f_tn
Very good points OH and Can-do-man, regarding biopsy.
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163305_tn?1333672171
In April of 2009, I had a live liver transplant with my daughter as my donor. Since I didn't have insurance, we flew to Taiwan for the surgery.
There are indeed advantages to having a related living donor transplant.
One is that there is no waiting list. Another is you receive a liver that from a close relative. This appealed to me. Obviously the genetic connection can only be a plus.

As the donor, you must realize there is some risk involved. We looked into the statistics of the transplant centers we considered. Our primary concern was the health of the donor. I knew I was dying but my donor was a healthy person in the prime of life.

My daughter was 31 at the time of our surgery. They removed 66% of her liver and it had entirely re-grown by three months post transplant. She took a couple of months off work. She commented that the hardest part for her, after the first month of recovering, was lifting weights, like heavy dog food bags. Other than that, she recovered rapidly.

I know she had to stop drinking alcohol one month prior to the transplant and she had to stop taking birth control pills. The doctor's will ask if you are on any other medication.
The surgery will leave both donor and recipient without their gall bladders. Although, this is minor, it is something you should be aware of.

There is a list of tests you'll need to do to see if the two of you are compatible. I really don't remember them all but I know they began with our blood types. Also, they didn't want anyone over the age of 50.

It took me a longer time to recover than my daughter as the surgery is more complicated for the recipient. One important thing is I did begin to walk as soon as I could and increased the distance of my walks as much as was possible. Exercise and good nutrition are two essentials to good health for everyone.

As for your sister, I must say when I was in her shoes, with ESLD, I felt like I was walking around with a veil over my face. Slowly, I slept more and more as my energy ebbed away and my body tried to deal with the simple act of digestion with a very sick liver.
On any days that I could, I took walks. My husband was a great help as I often felt unstable. His walking with me, knowing his hand was there for support, assisted me.

It is important for her to be on a restricted diet, meaning no or as little salt/sodium as possible and no red meat.
Salt can increase the likelihood of ascites and edema whereas red meat contributes to ammonia build up, causing hepatic encephalopathy.
Whoever is shopping for her must read all labels, checking for sodium content. Even bagged organic salad can have added salt. Stay away from processed foods.
The liver filters all of our food so the idea is to make it easier for her diseased liver to do it's job.
Therefore the best diet for someone with ESLD is fresh, ideally organic food as freshly prepared as possible.

I invested in a juicer to help add to my nutritional intake. I juiced beets, carrots and other fruits and veggies. Don't replace intake of whole fruits and vegetables with the juicer. It's something to use in addition to.

Since, keeping my weight up was a problem, I added flax seed meal to my smoothies and cereal.
Egg whites and tofu are good for albumin.
Those with ESLD often have trouble getting enough protein. She can eat eggs, beans, chicken and fish, again ideally organic.
It's challenging to make food flavorful without salt but I used lots of herbs and spices. Some like turmeric and hot peppers are actually good for the liver. Ginger is a wonderful addition and helps with digestion as does mint.

Since, I recently moved and haven't got internet in my home, yet, I can only write to you sporadically. But please, feel free to ask me anything at all. Send me a pm if you like. I will respond.

Best of luck~
OH
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