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susie_sassafrass
Regular Member


Date Joined Jun 2010
Total Posts : 317
   Posted 6/11/2010 2:33 PM (GMT -7)   
I just found this forum last week and have been reading the posts.
 
I was diagnosed with Giant Cell Hepatitis in 1990 and have been on prednisone ever since.  In 2008, I was diagnosed with heptatic encephalothopy and referred to the transplant center. Since then, my meld scores have ranged between 14 and 18, so I am deemed too healthy for a transplant.  They are watching a lesion on my liver and an enlarged abdominal lymph node.  I have been disabled since March 2008 due to extreme fatigue and encephalothopy.  In September, I qualify for medicare due to the disability.  I am only 48.
 
Most of the transplant forums I have found are more geared to post transplant members than those waiting. 
 
I am looking forward to sharing my experience of living with with liver disease with all of you. 
 
 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/11/2010 3:37 PM (GMT -7)   
Hello Suzie and welcome to HealingWell. Until your post I had never heard of Giant Cell Hepatitis.
I had to google it. I don't think we have any members with it . You are the first I think. But all the liver diseases seem to share lots of the same symptoms.

On this forum we have both pre and post transplant members........so we all can share and learn together........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 6/11/2010 4:01 PM (GMT -7)   

Hi, Suzie!  I also wanted to welcome you to the forum.  I had never heard of that type of hepatitis, either, but learned a bit in a Google search.  As PG said, all liver diseases have certain things in common, so you should feel right at home here.  It's a very supportive group.

Hugs,

Connie


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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 1:50 PM (GMT -7)   
I have a heridatary larged red blue cell disease dx 7 yrs befoe cirohsiss dx. Fasted and no liquor for a week before test. My mother has it to.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 2:25 PM (GMT -7)   
Hi, SD! How have you been doing? You no longer drink, do you? It's the worst possible thing you can do to your liver. I've forgotten....do they have you on prednisone, too?

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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 2:48 PM (GMT -7)   
HI!!!!! You remember me!!! thank you, I feel better already! No, I haven't had a drink since jan 01 09. I can't imagine how bad i'd be if I did. I'm not sure but I think I'm approaching the back side of the ESLD dx. Lots of things are no longer a option for me!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 2:52 PM (GMT -7)   
SD, how has your lab work been lately?

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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 2:54 PM (GMT -7)   
No prednisone. bp meds remeron, tramadel 300er,sprivia ,occasional oxycodine and oxygen. Some Nexium. Prednisone makes me dangerous.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 2:57 PM (GMT -7)   
Glad you're not taking Prednisone! It's a scary drug altogether, but does have some benefits in certain cases. When I mentioned lab work, I meant your liver enzymes, etc.

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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 3:03 PM (GMT -7)   
Pretty good! Liver function is as normal as they can be and kidney is hanging in there. I have gall stones like everyelse but not well enough for surgery. Pain in right Quadrant is my newest complaint and difficulty breathing
Got oxygen last month and seems to be helping with sleep ,appetite, and weight gain.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 3:10 PM (GMT -7)   
You said in another post that you weighed 76? Was that correct? Also, do you have ascites? If so, the fluid could be pressing on your lungs and causing problems with breathing. It's a positive thing that your liver and kidney function are good, though.

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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 3:19 PM (GMT -7)   
I was reading another post about oxygen fixing liver diease but I don't think it would apply to cirohis.Oxygen has improved my sleep and appitite.I was put on it because my levels were so low. Now that I'm not fighting with the fact that I need it (yes I smoke) I'm getting around the house better

sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/1/2010 3:25 PM (GMT -7)   
Yes 76 lbs. I'm up to 82 this month. Finding clothes is impossible. I'm 5'4 and small build but still look like a skeleton. Thankfully my grandkids aren't afraid of me. I had botox to fill in my checks since i'll never be able to do it on my own.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 6:45 PM (GMT -7)   

My goodness!  I thought that was a typo!  I'm glad to hear that you are gaining appetite and some weight!  It is just not healthy to be that thin and would also sap your energy.  Glad to hear the oxygen is helping, but until you stop smoking you will still have lung problems.  I stopped 7 1/2 yrs. ago, and I was a 2-pk. a day smoker for 40 yrs.  Best thing I ever did, next to quitting drinking and drugs.  I still get a craving for a cig occasionally.  I just don't act on it.

Hugs,

Connie


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


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 7/1/2010 10:56 PM (GMT -7)   
plz stop smoking... My partner who died April 22nd... got pneumonia from smoking.. which contributed to his dying earlier... and also... high blood pressure pills caused his blood pressure to crash.. be careful.. you have a very delicate body... tiny woman..
There is no pit so deep that He is not deeper still... Corrie Ten Boom


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/6/2010 2:30 PM (GMT -7)   
hope everyone's 4th was good!

You'd think at this stage of being sick stopping cigs would be a no brainer. I must be one of personalites that needs a vice! Maybe next week. Certainly would help weight issues.

In another post, I believe it was connies,Iread about a drug treatman called Vertox? Anyone know what it is and who it is for?

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 7/6/2010 3:17 PM (GMT -7)   
SD, I am so glad to see you are able to gain some weight! On the smoking thing, talk to your doctor about Chantix or something to help you. My husband took it (along with an antidepressant) and it really helped him kick that habit 3 years ago! He had to quit before they would place him in transplant list. So there was his incentive.

I believe Connie was talking about the Vertox. It's not approved by the FDA yet, but it is a drug that is combined with interfuron/ribovarin for treatment of HepC.

Connie, if I am wrong on this, please feel free to correct me!

SD, I hope you continue to improve on your appetite and gain some more weight!

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/6/2010 3:56 PM (GMT -7)   
Reasons to stop smoking.

1) It's expensive. Probably costs more than your meds.
2) You're hastening liver problems.
3) It's nasty and prevents one from getting on a transplant list.

Start putting food in your mouth, rather than a butt. You'll feel better and gain weight.
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/6/2010 5:04 PM (GMT -7)   
SD, I used Nicorette patches to get off cigs. I was a 2-pack a day smoker for 40 yrs. If I can quit, you can, too. Of course, I was in a body cast initially, which helped. But I didn't go back on the cigs when I was out of it and home. It's been 7 1/2 yrs. now.

Vertex is the pharmaceutical company (one of two I know of) that has a new treatment in trials. It combines Ribavirin, Interferon, and Telaprevir (for the Vertex combo...other company uses something similar.) The success rate is much higher, especially for genotype 1a and 1b. It also is for 24 wks., not 48. It should be available by next year.

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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 7/6/2010 7:19 PM (GMT -7)   
Yeah, I'll have to give it the old college try again! My family would love it if I could. So if you hear strange noises coming from the cookie aisle at the grocery store it could be me!

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 7/6/2010 7:53 PM (GMT -7)   
cookies taste better. If a Double Stuff Oreo(s) doesn't wean you off coffin nails, nothing will.
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/6/2010 8:12 PM (GMT -7)   

I just realized I had repeated some of what I posted earlier, regarding smoking.  But I think it's worth repeating.

Hugs,

Connie


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


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 7/6/2010 9:27 PM (GMT -7)   
gotta love ur humor david.... and cookies and ice cream??? yes!!

There is no pit so deep that He is not deeper still... Corrie Ten Boom

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