Mother just diagnoised

[justjennifer25]

My mother was recently diagoised with Hep C.  They think she has had it since at least 1989, but no one is real sure.  She has had her first round of treatment and will be getting her viral load tested again next week.  She decided not to tell us until last night becuase she didn't want to worry us.  Thankfully her nurse convinced her that we should be told so that we could take precautions.  i am not sure she really understood that it could be passed until then.
So now I am worried. Myself and my sister were living at home for many years while she was carrying it without symptoms.  Since it was unknown, of course no precautions were taken.  (treating each others cuts, scratches etc.  sharing razors, toothbrushes).  My sister and I are now both grown with families and I am concerned about their health also for the same reasons.
So I will be calling the doctor Monday to schedule blood tests.  So I am not sure I really have a question.  I just needed to tell someone.
Thanks for listening.
Jen

[orphanannie26]

thank you for your responses. hearing other peoples stories are comforting.

my mother is not home alone, her husband whos retired so hes home 24/7 and  is caring for her. he cooks, cleans, makes sure she takes her meds & eats, etc and get her to the doctors if tapping is needed. shes the one resisting hospital care. i also spoke to her about hospice a couple times yet she's comfortable at home as is. she has accepted she doesnt have long. Ive accepted it.

are you a nurse or have had an experience with liver failure? your info is highly appreciated thank you for reaching out :)

[wguimb]

Those earlier replies offer good advice.  I have been through the whole process with HepC and liver transplant. I got HepC (HCV) from a US Army inoculation shot in 1972.  It was discovered that I had a swollen liver in 2003 and subsequent tests revealed positive for HCV.  Liver biopsy at that time showed I had stage 4 level 3 scarring, which is almost the highest level of cirrhosis. Viral counts were in millions. In that 30 years, no one in my family or even my wife were ever positive for HCV.

I went through the various treatments for five years, none worked.  But those treatments kept what little function my liver had going.  However, in 2008 I began to have End Stage Liver symptoms.  I spent that whole year in the hospital being miserable.  It's not easy waiting to die. Lots of issues, They put me on the transplant list with a MELD score of 23.  Most patients get a new liver with a MELD around 30 or 40.

In september 2008, I was near the end and I had various infections, worms in my stomach, abdomen was being pumped every day for fluid buildup, encephalitis from the poisons and ammonia buildup in my blood. And much more.... I now had a MELD score of 30.  But in Houston at the time were over 8,000 people waiting for a new liver.  They told me I might not get a liver in time and expire before Christmas.  The hospital and surgeons in the area meet weekly to determine who is the most sick to get the few organs that come available.

In Oct 2008 a miracle happened.  Someone's 20 year old crashed into tree and became brain dead (that's not the miracle obviously).  But the family wanted to do a direct donation to me, if everything matched. A direct donor bypasses the waiting list and I got the liver. Blood type, cellular parameters and size was a match.. i was transplanted with that young man's liver on Oct 24th, 2008.

Now here in 2010, I am doing well with the liver, no signs of rejection.  I have to take a lot of medications (for the rest of my life) but it's worth it. Prograf is a wonder drug, that is what is preventing rejection.  I hope this helps those  with a damaged liver and HCV.  If you have questions, email me wguimb at gmail *******.

[merryBe]

I understand your concern and frustration Annie, there's no easy answer here however.

the truth is the liver is resililent and keeps try to soldier on and repair itself...but it sounds like she is nearing the end.

Unfortunately the disorientation and falling is bound to get worse, she really should be in a home, be it yours or a hospice or nursing home.
I know the idea doesn't appeal to her...but it's for her own good to be somewhere where someone can feed her, help her bathe, and watch over her. She will sleep more and more which is a mercy...it's the disorientation and falling that are of concern.
I'd say bring her home if you can...the children are not an issue so much in the summer...flu season is about over...and it's just wrong to leave her alone at the end.
I know you've thought of this...I mean, she could fall and lie with a broken limb all day.
How much better to have her somewhere safe.
at the very least get her a medic alert service so she can push a button on her neck or wrist to summon help.
Only problem there is the disorientaion...they can become quite disconnected, like an alzheimers patient...so this only goes so far.
I know you are exausted, but maybe closer is better...and maybe if she's in your home or a nursing home it would be a good transition. Folks don't like the word "hospice" because it means time to die...so see if a nursing home near you can take her in if you can not....at least that way she will be near, and looked after....she'll still be able to sleep as much as she wants..You could sell it maybe.

mb

[orphanannie26]

my mother was diagnosed with hep c/cirrhosis 4years ago. she was 52. they believe she contracted hep c vis blood transfusion in the 70's. She found out she had hepc because she felt funny. So they ran numerous tests. By the time they found out she had hepc, cirrhosis began. she is currently in the final stages. she has been in the final stages the past year. interferon almost killed her. Her body couldnt handle it.  the past year she has had fluid build up, confusion due to fluid build up, huge belly from the fluid, sleeps alot, days & nights are flip flopped. Recently, shes emaciated, no balance, uses a walker, gets "tapped" (fluid removed every other week), water on brain (is taking meds for this), and is taking meds for removal of ammonia (laxative?) her kidneys are currently affected. Thats what I know. Shes home. In bed. she has one day a week where she feels ok to shower. Then she goes back to bed. this "lingering" state has been going on for months. doctors say she should have been dead a year ago.  My question is "how long will this last for?"  Any thoughts are truly appreciated....................................

[Rain6866]

If my Hep C came from when we think it did Ive had it since I was 19 years old in 1987-88ish. Tattoos.
Most people dont know they have because there is little to no symtoms for years and years. Ive read on here that a  lot of people also have babies while infected with Hep C and the babies are Hep free.
I had a 10 year marriage after having it and my ex doesnt have it. My hubby now (Weve been together 5 years) doesnt have it and we have shared razors, treated cuts etc..  
get tested to relieve your mind but dont worry so much about it. I think you will find you are clear and free with the will of God.

Good luck and keep us posted.

Oh BTW.. please try being there for your Mom. Even not doing the treatments she still has it on her mind. Did they say what genotype she is or what stage her liver is in, if they did a biopsy?

[mlkimbrell48]

Hi there. I am in the same position you are in. My sister and I have just found out my 78 year old mother has it and she is in such poor health that she will probably not be able to take any treatment for it. I too have just found this web site tonight and it seems to be a great one. My mother received blood in the 80's and we are thinking she could have had it for years and they are just now finding it. I wish you and your mother and family God's blessing.

[meakea]

I'm sorry to hear your Mom has Hep C.   You have found a great site here to help you with your questions and to just have someone to listen to you.

I am 54 years old and found out a year ago that I have Hep C and it's been determined that I have had it my entire life (from a blood transfusion as an infant).  Once I got my diagnosis, I told ALL of my family including my husband , my kids, my ex-husband, my brothers/sister, my mother and all of them did eventually get tested and ALL of them (thank God) were negative!  I suspect you will find the same result.

I think you are very wise to have yourself tested because it's the only way you can put the worry about whether or not you have it out of your head.  I'm glad the nurse convinced your mother to tell all of you -- we can't fight Hep C if we don't know about it -- and this gives you the opportunity to take care of yourself and your family.

Best of luck.  Let us know how it turns out.