Can you help my husband and I understand Liver Cirrhosis? My mother in law is in Stage B and we are not sure what that is. She had Hepatitis as a young woman. At Christmas she went into a coma for a few days until her levels went back down. However, her feet still stay swollen as large as a watermelons. Now her stomach is swelling and her doctor does not seem to be concerned. She is very tired and eats very little if at all. Her feet hurt when she walks and she is out of breath when she does walk just a few feet. She is taking her meds but I am not sure what they are. Her husband, (recently remarried) doesn't like to talk about what is going on. The doctors told her she needs a transplant but will not do it because she is 72 years old and they do not feel she will survive the surgery. If this is truely the stage she is in, how long can she live like this? What can we do to prolong her life and make it as comfortable as possible? Should we seek another doctor? How often should we have her levels tested? What concerns should we be aware of? Will she go into a coma again if the swelling does not go down? Thank you for helping me with these questions.
I would definitely see another Dr. ,preferably a gastrinterologist, or hepatologist. 18 months ago I was as bad or worse as your mother-in-law.My liver failed and I was put in ICU for 7 days. They tapped my abdomen to get rid of the fluid(ascites) and given spironilacto, a diaretic, to keep fluids down, also lactalose to get rid of the ammonia that builds up in your brain(encepholitis). I left the hosp., went to alcohol tx. and did and took everything they told me, but I was still bloated and very fatigued. A few months later, I found this web-site.My original G.I. told me I couldn't be treated because I have cirrhosis,bad. It was suggested to me here to get a second opinion. I did. On July 26 2003 Pegasys started treating patients w/ barely compensated cirrhosis. I think maybe a stay in the hospital may get her healthy enough to try tx.. Number 1 rule, absolutely no alcohol. If she does well they will run a series of tests (liver biopsy, blood work to find out Genotype, and viral load, overall heath besides the Hep. If she is approved for tx.(treatment) it won't be an easy ride and you'll need alot more info before deciding. But it is a chance. I have been on tx. 14 weeks and have 10 more to go and have had a close call, but I really believe I made the right decision. Best of luck and stay in touch. Joni
This is a patient-to-patient support forum. None of us are qualified to give you any more than our personal opinions.
With that in mind, here is mine. I'm guessing she still has active hepatitis or her liver would not have progressed to cirrhosis. You should find out whether its hepatitis B or hepatitis C. Most of the people here on the forum have hepatitis C. Jonihs's advice assumes your m-i-l has hepC.
Once you know what sort of hepatitis she has, then you can begin to understand her options, the medications available, etc.
All, Please excuse my using this thread to ask a nonrelated question.
Revenire, I am not up on most of the conversations posted lately, but I was just reading the thread containing the blood barrier debate......I know that I have missed much of the conversations.....so my question may be redundant...but....I am concerned about anyone who starts tx. and then decides to stop....because doesn't that allow the virus a perfect opportunity to mutate therein making subsequnt tx.less likely to be effetive??? Does this make sense?...sorry I am not the best at verbalizing this "stuff"..LOL...thanks, berlynn
The swelling you mention is 'edema' (in her feet), and 'ascites' in her abdomen.
She's probably taking diuretics for that--- but she should also be on a low sodium diet.
You should notify her doctor if you notice the edema or ascites getting worse. (The doctor may need to adjust her dosage of diuretics)
If her ascites (swollen abdomen) has caused her belly-button to change---- have the doctor look at that.
(Could be an umbilical hernia)
If she does have an umbilical hernia--- don't let her strain her abdomen (no lifting, pushing, or pulling)
The coma you mentioned was caused by 'encephalopathy'.
She should be taking prescription Lactulose to keep that under control.
You should notify her doctor if you notice any changes in her behavior or sleeping pattern. (The doctor may need to adjust her dosage of Lactulose)
If she hasn't had an endoscopy done yet--- get one done.
The endoscopy is to look for 'varices' (swollen varicose veins in the esophagus, stomach, duodenum, and intestine).
Varices need to be found and kept under control (because there's a risk of them bursting and bleeding)
You need to make sure she stays away from alcohol.
Also, don't let her take any drugs unless you get the DOCTOR'S APPROVAL (even over-the-counter drugs, or supplements).
If she is taking diuretics, her doctor should be monitoring her electrolytes and kidney function (simple blood test) on a regular basis.
ALWAYS ask for a copy of bloodtest results. Keep track of her bloodtests, watch for changes. (You can catch problems early that way)
Know what an Emergency is.
Get immediate help (at an ER) if any of the following happen:
1. Vomiting, or Fever, or any sign of infection
2. Vomiting or coughing blood
3. Vomiting or coughing a substance that looks like coffee grounds
4. Passing blood
5. Passing black stools
6. Any trouble urinating
7. Any signs of worsening encephalopathy (confusion, or excessive sleepiness, mental changes, staggering, etc.)
8. Any bad pain in the abdomen
There's a support group for people with advanced liver disease at http://www.expage.com/cirrhosis
(((You're welcome to visit there)))
I'm really not sure about your question. I understand what you are asking but I really don't have an answer. Is the first treatment a person's best shot against this disease? I don't know -- I've read that it is but I also know people that achieved a SVR after several treatments.
I believe the virus is ALWAYS mutating, explaining why it is so hard to come up with a vaccine against it. This rapid mutation is also the reason that the protease inhibitors have failed so far: the virus outwits them by mutation.
i think you deffinitly need another Hepatologist's opinion or a GI. she is in bad shape. my mother died of liver disease and had the same things going on as you mention in your comments. she did not live long after presenting with these symtoms.
i had no idea about all they do now a days for cirhosis and just watched as my mother went thru all this. i wish i had been more proactive and inquisitive as to find out what could be done for her. the doctor didn't even mention liver transplant. now i can't understand that. she was 65 when she died.
i think the dr. she had took a fatalistic approach you should see someone who is more aggressive in approach and see what they would do for her. and then you can all decide together what her best options would be. but, i would not stop at one dr.s opinion when it comes to life and death decisions.
Yep.....you knew what I meant...and yes your comment makes sense. Maybe it's my misinterpretation of something I read....I was thinking that once the virus was exposed to the tx and then allowed the chance to mutate cause it is no longer being supressed after tx. is stopped....that the SAME tx would not be effective for that virus cause it would already know how to fight it. Although I am trying to learn more ...much of this is over my head...LOL
Also...did you see the question I posted in the above thread about Scherring vs Roche and the whole weight based thing? I thought that pegasys was weight based...but the Scherring Nurse said that the peg inteerferon is the only one that is weight based. Got any views on this? Thanks, berlynn
I have found a lot of info on pegasys membership site including dosage trials and recommendations. You do need to register but it's free. If you serch around the site you will probably find much more than you care to read. LL
IF SOMEONE IS ON TREATMENT WITH INTERFERON 5MIU DAILY FOR THE LAST 5 MONTHS. NOW HE HAS DEVELOPED INFECTION (ABSCESS) AND GONE THROUGH SURGERY. HE STOPPED TAKING INTERFERON. IT TOOK HIM ONE MONTH TO RECOVER FROM SURGERY. PCR LEVEL IS 2099 COP/ML, ALT 80. WHAT DO YOU RECOMMEND IS THE COURSE OF TREATMENT IF ANY FOR HIM NOW?
"Answer by Douglas Dieterich, MD
Dr. Dieterich is Vice Chair and Chief Medical Officer Department of Medicine at The Mount Sinai Medical Center and an attending physician at New York University Tisch Hospital
"Once you are off interferon for 3 weeks or more, you have to start over. However the low PCR may be a false positive, so before I started again, I would re check the PCR."
So that seems to be that: If we stop treatment we need to start all over again.
As far as the pegs and weight based dosing goes I understand it like this: People with higher <a href="http://www.halls.md/body-mass-index/bmi.htm">BMI (body mass index)</a> don't respond as well to treatment so they need MORE ribavarin and apparently more PEG-INTRON. I believe this has to do with the way the molecules are processed by our bodies (Pegasys peginterferon alfa-2a through the liver and a longer half-life & PEG-INTRON peginterferon alfa-2b though the kidney and a shorter half-life). A head to head study would be wonderful.
"Pegasys peginterferon alfa-2a through the liver and a longer half-life & PEG-INTRON peginterferon alfa-2b though the kidney and a shorter half-life). A head to head study would be wonderful."
Wow, I din't realise that they were processed differently....I just took for granted that they were both processed through the liver.
I haven't done the research that I should of.....I also wasn't tooo concerned about the diff of the 2 cause I was allready on pegasys...but when my friend was given peg inter...and I went to the class with her...it raised some questions for me....I really wondered about the weight dosing cause of the way this lady pushed that as the reasoning of why peg inter was supposed to be better...and I jhave read so much about how people think that the sides on peg are harder than on pegaysy.
Rev...hve you seen the new PEN yet...the one that Scherring demonstrated did not look any easier than what I do with the pegasys regular inject now. You still have all these steps to do...dial the correct number...push to mix...it is huge tooo.
I had expected the PENS to be more like my neupogen.... all I have to do is take off the cap and inject...it's premixed and premeasured...
Thanks again for all the info...it sure helps to be able to get some info and not get LOST in research like I can do quite easily. You are VERY kind to share YOUR hard work, thanks, berlynn
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