Cure/ treatment for Chronic Parenchymal Liver Disease

Dear All

My mum, aged 51yrs(wt 50kgs) had serious Jaundice in June 04; she was hospitalized,and she has never been able to recover fully.Her liver is normal(there is no swelling)but she has developed the Chronic Parenchymal Liver Disease.She has been undergoing a lot of treatment,the doctors keep doing USG every month and one of the latest reports says

"F/U/C/o Chronic Liver parenchymal disease with isoechoic nodule in left lobe of liver.
Liver is normal in size and outline shows heterogenous and coarsened echotexture s/o chronic liver parenchymal disease.IHBR are not dilated.Vascular channels are clear.Evidence of well defined isoechoic lesion measuring 2.8 X 2.6 cm in left lobe likely to be regenerating nodule" The dimensions of the lesion were 2.2 X 3 cm when it was first diagnosed in Jul 05.

The only food she is having is boiled vegetables, fruits and juices. Her stomach troubles if she eats anything else. Also she has a constant feeling of a strange kind of tightness around her stomach.Can she ever eat normal food?

I met the doctor recently and he said that she will have to live with it and be on continous medications like the diabetic patients.

She is going through a mental trauma and fears that someting really serious would go wrong some day and she would'nt survive.In a way she is pressing us to get the liver operated?

How serious is her problem and how serious can it get?Can we get the lesion operated or she can live normally with it?Could there be a stage where she would need a liver transplant? Please suggest.

Thanks so much!
Avilash

[cuteus]

lots of valid questions about your mom's case, did you get an opportunity to ask the dr at that last visit? He should have been able to give a medical guess as to what the outcome could be.  Is there any way you can contact his office and pose these questions to him? Is he a hepatologist? if he is not, you might want to make an appointment with one and make sure all your fears and questions are addressed.  Most folks here are dealing with hep c, and a few with AIH, so there might not be anyone who can make any suggestions. There is a gastroenterologist in that section of Med Help that answers questions for a nominal fee.
good luck

[Kanzou]

You may try posting your question on http://forums.delphiforums.com/liverfailure/messages
This forum tends to deal with HCV issues where Delphi covers liver deseases - cirrohis, tumors, TPX, etc.

[cajunlady]

I have an excruciating pain in my right side since yesterday.  I did as vegas777 told me to do and called my hep doc. The pain is in my far right side at the rib cage almost at the complete right side in front.  The hep doc office had another doctor out of that office call me.  She had no clue what my stats are and her suggestion to me was it might be your lungs go see your primary care phy. I have never know the lungs to be in your right side; in your back or chest but not the right side okay.  I do have an appt today to see primary doc at 3:45.  I did have some nose bleed this weekend and now the stuff in there is not a pretty color.  I am also getting very light headed and dizzy with shortness of breath; so I think I will have my primary doc run my CBC's. I still do not see my hep doc until Feb. 20th. Has anyone ever had this kind of pain in treatment.  This pain is bad;  I am about to start pulling my hair out; like thats not going to happen soon enough, I want to pull it out.  I do not want to stop treatment but I do not feel like I am getting the proper care from my hep doc.  If anyone knows ANYTHING about having side pain like this PLEASE POST.

cajun

[vegas777]

don't wait, go to the ER please!

[Forseegood]

Hi, sorry to hear of your troubles, I think Veg has the right idea, but sometimes ER's don't know enough about treatment, liver disease, etc. If I remember rightly, don't you live in the los angeles area? in which case, maybe you could go to the USC liver clinic, or some other teaching hospital with good liver units like UCLA or Cedar's. If you call their liver dept's and tell them what's wrong, they can usually take you right in...if you don't live around here, try the similar thing in your area...failing all of that, of course go to the ER...please let us know how you are doing, keep my fingers crossed for you that it's just some annoying thing going on brought on by the TX....be well...

[strator]

This post seemed to get missed yesterday. I thought I'd repost it up here where this is more room.
Don

Hi Everyone,
My Dad start his first tx this friday. I don't know if this is common or not after his first shot he didn't sleep at all. I am worried could you please give me some advice. also what to expect.please

Thank you

cajunlady: Please let us know how you make out. Whether someone's on tx or not, if you get pain that feels excrusiating it needs to be checked ouit. Our bodies get plans of their own even when we aren't on serious meds.
I wish you relief,
Don

[Avilash]

Thanks guys ! Will try doing what you suggested

[avidreader]

See my response to you posted in thread below--possible spinal compression fractures? I know--it sounds weird, but it's worth reading the post.

[friole]

Cajun - sounds serious and I was wondering how the appointment went with the primary doc.  Some of what you discuss sounds like the hgb drop when it first drops, the feelings are awful = the dizziness, such tiredness. -- but I don't know about those severe pains.  I think Fisheress had some similar pains a couple of weeks ago but rode them out with tylenol or some OTC med.  

T's dad -- interferon does wire a lot of people.  I sleep just fine after the shot, but for the first few weeks had a lot of excess energy on the next day.  After that first sleepless night, did it get better.  He may need a sleep aid - a lot of people do on tx.  I hope you find this post.

[beamishboy]

T-- the treatment medications cause insomnia with me-tho sleeping would be a blessed escape!...hope yur dad's treatment stabilizes and please post us 'what's going on'-sounds like your dad has a real good ally with you T,bravo!!
Cajunlady-sure hope pain has subsided..i get pain in left-side chest,just below my manly breast..gone now..Heart ache,missing the hgb's???? Anyone else get same,similiar???

[Tselere]

Thank you for posting my question again.

My dad is 65yrs old  Geno type 4 with 380,000 viral load.
as I said after he got his first shot on friday today is the first day he slept for 6hours. He also seems very depressed do you think this will go away after acouple of shot or it will be the same. It's hard to see my dad like this for 48week.

Thanks again.

[can-do-man]

Hi there, that strator is a good kind hearted fellow, Im glad to see a daughter that cares so much for her dad. Talk to is doctor about getting him some AD's for is depression.

Is your dad seeing a hepatologist? Being age 65 and geno 4 he really needs too. Also do you know his amount of liver damage by having a bx? If he has little damage at his age i would ask a hepatologist if the risks of tx. outweights the benefits. Good luck to you and him, i hope everything works out for the both of you.

[strator]

First, the amount or degree of side effects of the meds can vary a lot from person to person. Some people have a lot of fatigue. Other ones that many also suffer from are depression, and or anemia due to changes in blood count, itches, irritability, muscle and joint aches, thyroid issues. Some have little if any problematic sides. You'll notice reading through posts here that some of us are fortunate enough to be able to work, while others have sx that can make just getting from room to room difficult. I'm able to do construction type work a few days a week. The side effects of this treatment though often difficult, can be managed and should be monitored by the treating medical staff. There are meds for anemia, depression, etc. to provide help through the treatment. Often the sx lessen or change during the course of treatment.
By the way is he on combo therapy. Weekly shot and daily pills?
Also as can-do man said the biopsy can make a difference to a lot of people. Hep C is a long term progessive disease.
Anotther thing is medical and emotional history. I'm one of those that had a long history of alcohol abuse and addiction. I spent 2 yrs while preparing for tx including a support group and therapy because I wasn't the most emotionally/mentaly stable guy around, and this can be a rocky road. Was your Dad working and all regularly? Some people have a hard time dealing with the change when starting tx. Any long term tx can have rough emotioinal sides because we may feel we can't handle our reponsibilities.
All in all, often the first few weeks are the roughest, but nothing is a given. On thing that helps a lot of us is reading posts and conversing with others on tx. I've learned a lot of helpful hints. Help is out there. This is best handled one day at a time. Stay close to the board when you can or have questions, have your Dad talk to his doc and others on tx. Most people here have learned to be proactive with their tx and drs. so as not to suffer sx unnessacarily, and achieve success.
You're doing a great thing for your Dad. I know how difficult it is. I live with my 82yro father and he can be pretty stubborn about taking help.
Best to you,
Don

[beamishboy]

T--i can't answer,but this mite give heads-up to those that can...Your dad shud have sum literature w/ meds that explains sides,if he is truly depressed(heck-i am!!!) his Doc.. should be informed immediately--they will call in anti-deperssant meds right to pharmacy,nurse or receptionist will facilitate all this...if it's affecting him,and these meds will most definately bum you out--they-cause serious dpression in +50% of patients---Good Luck Girl....your doing good work,keep posting

[Tselere]

Thanks again.
Yes I will do anything that help's to him. unfortunatly he doesn't speak english. so I am the only daughter here in usa can take him to the hospital and do everything that doesn't bother me he deserve more than that. Hey Don, Do you know about geno type 4. or any one in this forum because it seems like alot's of people has geno type 1 not 4. also my dad takes once a week shot and 800mg riba a day.

[cuteus]

genotype 4 is more common in the Middle east and Africa. It is very resistant to treatment(tx) so you have to make sure the team in charge of your dad knows what they are doing. I know of a few g4 in this forum, but only one comes to mind, hepcgetlost, who treated for 72 wks, around the time I did. Your dad needs as much support as he can get, while on tx.
keep in touch and ask away anytime