cirrhosis and hep c

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sad grandma one
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Date Joined Apr 2009
Total Posts : 29
   Posted 1/28/2010 12:39 PM (GMT -7)   
I  have  hep  c  and  now  have  cirrhosis  also.   Tried  to  get  treatment  since  2003  but  could"nt   find  dr.  that  took insurance  i have.  Finally found  Texas  Liver  Center and  received  help.  At  first  they  did not  want to treat  hep c   now  they  have decided  they want to  so i can  be  put on transplant list.  I  am  scared  that the liver  will not  hold  out  for treatment.               

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/28/2010 12:48 PM (GMT -7)   

Hi, Sad Grandma.  Just because you have hep C and cirrhosis and are going to undergo treatment, doesn't mean that you are going to die soon.  I was diagnosed with "C" in '93 and cirrhosis in '07, and I'm stable.  I am holding out for the new treatment that adds a 3rd drug, which will be widely available in about a year and only has to be taken for 24 weeks.  Once you start treatment, if you are not responding by the 8th week, or if it seems to be affecting you adversely, they will take you off.  So try to be positive.  A positive attitude, the right diet, and enough rest can do wonders for us.  wink

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
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Date Joined Apr 2009
Total Posts : 29
   Posted 1/28/2010 3:22 PM (GMT -7)   
I have a good diet now. My meld score is 13 to 15. I have to lose 40 more pounds but am doing it since changed diet. I"m been told that the hep c treatment is really hard to get through. I pray alot. I just get scared of what i have to go through. They have put me on the transplant list but am at the bottom because meld score is low. Keep me in your prayers. Most people get freaked out by this so most of the time i feel very alone.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 1/28/2010 4:16 PM (GMT -7)   

I know that most people really don't understand.  I have a problem because I look well but have very little energy.  I have to sleep a lot.  Treatment IS rough, but we are here for you.  Feel free to vent any time.  Let us know how you are doing.  You may not feel up to doing much when you are on treatment.  Do you have a good support system?  Your family and friends need to understand that treatment is basically chemo and that you need their help and support. 

What transplant center are you going to?

You will certainly be in our thoughts and prayers.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 1/28/2010 9:14 PM (GMT -7)   
Thank you hep93. Sometimes it gets alittle overwelming. My children would help if I ask but 1 doesn"t care, youngest is not handling it very well, 1 it scares them badly, and 1 would help if I ask. But of course I'm a mom and I WANT TO PROTECT THEM. My sister is alot of help. She listens to me alot. I go to Texas Liver Center. I am really a loner. ONLY 1 REAL FRIEND. I lean on my faith alot. How are you doing lately? Sounds like stay tired alot. They said that fatique was something that would happen, and it has but not real bad yet. Thank you so much for listening. You have helped alot. Thanks again Sad Grandma

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/28/2010 11:46 PM (GMT -7)   
Hello sad grandma and welcome to HealingWell.   Sorry that you have been diagnosed with this disease.
 
You aren't alone any longer.......you have us ....your cyber-family.   Come any time to laugh,cry or just to vent.  We will be here.  
 
Take care......thoughts and prayers.... 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/29/2010 9:50 AM (GMT -7)   
SG, I only have one (grown) child and she can't even take care of herself properly, so I'm on my own.  Fatigue was what led me to seek a diagnosis.  The first doctor just blew it off as "hormones" and cigarette smoking (which I finally stopped.)  But in '93, I had a woman doctor who cared enough to investigate further and found that I had hep C.  A specific test for C wasn't available until at least '92.  I've survived liver cancer and fatigue is my biggest problem at the moment.
 
Hang in there!
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 1/29/2010 12:28 PM (GMT -7)   
Yes, have a daughter kinda like that. I wish I had a better
relationship with her but this is her choice.
My sister helps alot but she takes care of my mother so don"t get to see her alot.
Thank you so much for being there for me. Ya"ll have helped more than you know.
Yes had doctor that blew off my simptoms too back in 2003. Finally doctor referred me to a liver doctor and he did most of the tests then informed me I had to find my own Liver Center. I tried hard to find 1 then finally found the 1 I go to now. Its been a hard road just to find the right care. Thank ya"ll for being there

deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 1/30/2010 7:02 PM (GMT -7)   

sad grandma, How old are you and when were you diagnosed with hep c and cirrhosis ,you said you tried to seek treatment in 2003. How are your platletes and other blood work results

Alittle about me:

Like you I only have 1 good friend, I revolved myself around my family. Although I don't talk about me to much to my friend since she gets very upset and my kids don't like to talk about it and my husband is an alcoholic so needless to say I can't talk to him. The forum is the best thing for me. There is alot of wonderful friends on here to listen and give advice or just for us to vent and not be judged.

My lab work(blood results) were off since 2004 but my Dr(at the time) didnt tell me or order further testing, by the time I was diagnosed in 2008 my labs were pretty bad. I at that point(2008) was told I have cirrhosis ,varcies,enlarged spleen ect. I was put on the transplant list and my meld score was 12 and now it's 9. My hepatologist tried me on hep c treatment at 1/2 the normal dose,but after 4-6 weeks of treatment I had to stop due to my blood work went into the danger zone. It wasnt pleasant but if it worked and I was able to take it I would due it again. I'm a fighter so for now I as Connie said: diet is important and rest. I also am very fatigued and due to the increased fatigue I just stopped working recently but hopefully I can go back to work soon. I have been sleeping 8-10 hrs. at night and sometimes I get up have coffee and fall back to sleep, then I fall asleep again in the afternoon. My Dr. said to rest and sleep when my body tells me to. I don't have much of a choice since I can't seem to stay awake when I get tired. I was just diagnosed with chronic pancreatitis so I'm not sure where my pain comes from or if its from all(Liver,spleen,pancreas,gallbladder) I dont take pain meds. since its not good for the liver,but fortunately I have a high tolorence for pain.

Please remember to eat right,rest,dont take over the counter meds without your Dr. giveing you the ok,and most importantly don't give up!

Take care and my thoughts and prayers are with you,

Dee Dee


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 1/31/2010 1:07 PM (GMT -7)   
Thank you DeeDee,
My platletes are alittle low but Dr. doesn't seemed concern.

The PC I see now would not refer me to a liver doctor, then liver enzimins got very high so he gave me a referral. Then the liver Dr. did all the tests and then told me I had Hep C and cirrhosis and I had to find a liver clinic to be put on a transplant list. Didn"t tell me how or where to go, nothing just its your problem, so I found 1 myself and they are good. I just don't understand alot of what they tell me. That was in Jan, 2009.

My children do not face it good at all. I know they are afraid so I tend to not tell them everything. I don.t tell them how bad I feel most of the time. I don't take pain meds either. Don't want to until I have to.

Do ya'll have a diet plan? I stick to vegtables mostly and soup. If you have any suggestions please post them or email.

Thank you so very much for all the help. I felt so alone before.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2010 1:32 PM (GMT -7)   

SG, don't forget beans as a source of protein.  You can also have fish, chicken, and a little lean, fresh pork.  Fresh fruits are good for your immune system.  Filtered water and tea are recommended.

When you go to the liver center, ask them to explain anything you don't understand.  You have that right as a patient.  Here's a link to info on hep C and its complications: 

http://hepatitis-central.com/hcv/hcc/toc.html

Hang in there!

Hugs,
Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/17/2010 12:38:52 PM (GMT-7)


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 1/31/2010 6:00 PM (GMT -7)   
Sg, Ask to see a nutrientist/dietition after they give you a list : sodium restriction,protein ect. I'm on a reduced sodium diet as most if not all liver patients. I'm not much of meat eater so I was told to eat walnuts,natural peanut butter,yogurt,
beans fresh veg.especially dark greens, fresh fruit,ect. Watch out for your soups if they are canned, homemade would be better for you. don't add salt to your cooking and try to watch the sodium content in other foods. I also drink ensure or boost when I don't have an appitite (this was recomended for me) I was also told to stay away from soda pop and caffine and as Connie said to drink filtered water, poultry and lean pork, fish but to stay away from red meat. I also make shakes with fresh or frozen fruit ,yogurt, sometimes I add alittle lactose free,fat free milk or V8 light fruit juice. I was also told to stay away from vit. A  and iron supplements.
When you have your next appointment ask the DR. anything you don't understand or want to know. Before your appointment think of what you want to ask and write it down so you don't forget, this is what I do. You can also ask for a copy of your visit and lab results ect. They can make you a copy before you leave.
 
Take care,
Dee Dee

sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/4/2010 4:34 PM (GMT -7)   
Sorry everyone,

Did not answer cause was in hospital. Freaked out PC doctor. He doesn"t know what to do with someone with liver problems. Now Liver Center wants copies of tests they did in hospital. Everyone is really getting on what nerves I have left.

They said my platlets were at 50. They seemed concerned but when I ask they said don't worry. Easy for them to say.

Thank you for the tips on diet. They helped alot. I talk to a dietetian at liver center and she said I was eating good. Keep it up, but I'm going to ask to talk to her again.

Ya'll have helped me more than anyone has. Thanks to all of you so very much.

sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/4/2010 4:55 PM (GMT -7)   
Sorry didn't answer alot of your questions. sometimes my brain a malfunction.
I am 57 years old. I go to Texas Liver Center. I received a registered letter from them today saying there was 3 things I had to do before they would put me on the transplant list, hep B booster, start hep c treatments, have a MRI done again in March, lose 40 pounds. Am losing weight slowly but guess I will try harder.

Am alittle bummed right now.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/4/2010 6:08 PM (GMT -7)   

SG, sorry you were in the hospital, but it's good that you got testing done.  It's important that everyone communicate with each other, so be sure to sign a release to have those records sent to TX Liver Center, or request them for yourself and make copies.  It is always good for you to have a copy of everything yourself.  That way, you can follow your progress with your labs and tests and note differences, plus you will be able to make copies for whoever needs them.  How far of a distance is it from your residence to the Liver Center?  Would it be possible for you to get a GI doctor locally, if not a hepatologist?  Perhaps a GI doc, or even an Internal Medicine doc, would be a little more educated about liver disease than a PCP.  Does the TX Liver Center want to oversee the hep C treatments or can you do that with a doctor locally?

Try to eliminate everything white from your diet (sugar, white bread, white rice and pasta, white flour) and keep salt and fats to a minimum.   Walk more, too.  This should increase your weight loss.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/5/2010 11:08 PM (GMT -7)   
Hi Hep93,

I live about 45 miles from Liver Center, takes 50 to 60 minutes to get there.

Yes they are overseeing the HepC treatments. I have to take a class on how to give myself the shots and how to space pills out the right way. Its on the 16th. Then I call the Liver Center and then they call and have meds mailed to me.

I am sooooo stressed out lately. Went to PCP office today and signed release so they would send them the tests results they did in hospital. I got copies too.

I sound like a complainer but there are other things going on in my life and then all this stuff too. I keep telling myself that God does not put more than we can handle on us. I pray alot .
Thank you for listening. Don't have anyone I can tell this stuff to.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/6/2010 1:20 PM (GMT -7)   

SG, thank you for answering my questions.  I'm glad that the liver center isn't too far away.  You don't sound like a complainer to me.  Even if you are, it's perfectly okay to vent here.  We all need a safe place to do that, and that is one of the functions of this forum.  Also, we may be able to offer helpful info and suggestions if we know what is going on.  It's sometimes hard enough to deal with other "life situations" when we are well, but when we are not feeling well it often becomes impossible.  Just remember that your health should be your primary concern and that it is not your job to "fix" other people or their problems.  You have to take a little time for yourself, too, or you will be no good for anything (a pedicure or lunch with a friend can do wonders!)

Please keep us updated.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/12/2010 7:57 PM (GMT -7)   
I go to hepC class Tuesday evening. They send meds. out after they get a certificate from them saying I took the class.

So I start meds next week.

Say a prayer for me that I can make it thru. BLOOD COUNT is still low. Doc says they will keep an eye on it.

Thanks for listening.

Sad Grandma one

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/12/2010 8:45 PM (GMT -7)   

SG, good luck with your treatment!  Let us know how it goes!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/14/2010 1:13 PM (GMT -7)   
Thank you Connie, I will keep you updated.
Keep me in your prayers.
I tell myself to be strong, but will be honest, am scared.

Everyone is telling me they are hell.

Thank you so much for being there.

Sad Grandma one

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/14/2010 2:36 PM (GMT -7)   

SG, keep the goal in mind:  To rid your body of the hep C virus!  Slay the dragon!  If the treatments aren't reducing your viral load and LFTs, they will know within 8 wks.  In other words, if it's not working, they won't keep you on it.  If it IS working, then hang in there!

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 2/17/2010 12:39:52 PM (GMT-7)


sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/17/2010 6:01 AM (GMT -7)   
Okay, I have to call today and tell them I went to the class last night so they can send meds now.

I keep tell myself its so I can get better for my kids, grandkids, and great grandson. And I am thinking about

myself too. I am taking your advise on I have to think of myself right now. I have to set it up to start meds on Fridays for shots. That will give me 2 days to feel better before granddaughters come home. They are 15 and 16. I don't know what I would do without them.

Keep me in your prayers and thank you soooooooooooooo much for being there.

Sad Grandma one

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/17/2010 10:47 AM (GMT -7)   

SG, you are fortunate to have family support and help.  And you're young to be a great-grandma already!  You have a lot to live for!  Just be prepared for bruising with the shots.  Remember to rotate injection sites and to give them in the lower half of your body, in places with the most fat, like abdomen and thighs.  I'm sure they went over that.

My thoughts and prayers are with you!  Keep us posted.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/17/2010 12:36 PM (GMT -7)   
SG, Some more tips when injecting yourself. I was told that applying ice to the injection site for a few seconds makes it less painful. I never used that method, as the shots (to me) weren't painful. Or, pinch the flesh on a site and inject there. Again, I didn't feel the need, but everyone's pain threshold is different. I would give myself a shot on Friday morning. That way, I didn't feel crummy, until after dinner that evening. By Monday, I felt good enough to go to work. Mainly, I had a slight fever and flu like symptoms. The first time or two will be the worst. By the third or fourth time, it won't be as bad. After that, the rest of the reactions to the shots and ribaviron pills should be the same each week. I made it through the 48 weeks with a few, minor problems, though in the end it was worth it. Keep a positive attitude, don't be scared of the treatment, as the other choice is to let the virus win. Be well. **David**

sad grandma one
Regular Member


Date Joined Apr 2009
Total Posts : 29
   Posted 2/17/2010 2:03 PM (GMT -7)   
thank you Connie, that is what I needed to hear, someone that understands and just to give me the extra support I need sometimes. Yes I have some family support but try not to put alot on them.My son lives right next door and sometimes I don't see him for weeks at a time. One of my daughters does not have time for me but her daughters are the 2 that live with me. I try not to put alot on them because they are teenagers and I want them to have a normal life most of the time.
Yes, am a great grandmother! My oldest grandson is married and has a son that is 8 months old. They live on the other side of my son. i try really hard to not lean on them, I love them too much to hurt them. They know that I'm sick and with what so I leave it up to them if they want to know more.
The sixteen year old does alot for me. She is my "little mother", thinks she has to take care of things.
I make them go to their moms on weekends so they spend time with her.

They just called from the pharmacy, they are gonna send meds on 24th. will start on the 26th.
Thank you for all your support.


Sad Grandma one
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