MedHelp says OK to start our new group and sent me a link

[hepcandme]

I was pleased that someone pointed out that it should not be just for cirrhotics but for those with serious fibrosis as well. Still best to limit the group to focus on our specific issues

I will set it up but what I heard people say they wanted was:

1) A forum for those who have achieved SVR
2) Research and anecdotes or happy endings about livers actually improving after the virus is gone
3) Strategies that have worked for others to improve liver health
4) Hope and encouragement about how one's liver really can improve over time
5) Science and data and more science and data

(I love these stories about people getting liver scores straight away but am always rather skeptical since I am cirrhotic and there is no real "cure" - only a stop in the further deterioration of the liver and other organs

I propose calling the group After SVR, Improving Liver Health

Anything I forgot? Otherwise, I'll go ahead and stet the group

[Magnum]

Life After Hepatitis C

Magnum

[hepcandme]

Ha!

I was feeling so ill when I was trying to set this up (My last 2 weeks of treatment) that it makes it seem that I am just a complete luddite when it comes to technology

Thanks to everyone for stepping up and helping to fix things. Well, except the candy bar thing

[JimmyMose]

Just noticed the link you provided on June 21 post goes to a pregnancy group

I found the currently working link on your profile page

http://www.medhelp.org/forums/Beyond-SVR---improving-liver-heath/show/2066

Not sure if link gets auto changed over time.

Best wishes for the new group.

[susan400]

I never reached SVR..., so that wouldn't be the group for me. But, how about calling it Living with Hep C-before and after?   That includes 'thinking positive', the focus on the 'Living'.  Anyway, I don't really matter that much anyway to what your group will be about, since I haven't been coming Medhelp all that regular and also because I never reached the point of having cirrhosis.  I've just always been in this 'middle of the road' deal with being unable to clear, treaments out the 'whazzooo' , symptomatic in that I have this no energy deal and the 'slightly headachy' deal , to abdominal tenderness and some abdominally puffiness w/o ascities, w/o bleeding of varices, w/o cirrhosis.  This is one of the reasons why the insurance company isn't gung-ho on shelling out the bucks to pay for the Harvoni is because I'm not having late stage disease symptoms, and my Fibrospect labs show no indication of progression to cirrhosis.  Sure, I could probably fight it with numerous letters from the doctor to insurance company and then, collecting the denial letters and sending them to Patient assistance network at Gilead, but frankly I'm just not ready to put up the energy to have to fight them for it.  Anyhow, I wish you luck with your group. Take care. Susan400

[keepingOnkeepingOn]

Hep C " It can be overwhelming to face an undetermined future for many of us." as Kim says. That is what the new group is about or did I miss something? Isn't it a network to move past SVR and talk about liver issues and feelings about that post tx? It's about 'what to expect' as we keep a record here of it all and move on to a life that is as healthy as can be. I like the proposed name With SVR in it.

[Livelife777]

Linda.   Patras right.   You need to have in the "H"s in the Directory.  If it's titled Beyond SVR it will be in the "Bs" and will get lost in the shuffle. When someone new is looking for help they are going to look for Hep in the line-up, not in the B catagory.  You may want to stay with your original title but as Pat suggested include Hepatitus C before it.  I felt the same way as Pat that nobody would find it.

[hepcandme]

Here's the link to the new group:

http://www.medhelp.org/forums/Beyond-SVR---Improving-Liver-Health/show/2069

please join us!

[patra_]

Good points!

[dontworry_behappy1]

The reference isn't to the creation of a new community.   It's a intent to create a user's group.   The user's groups are referenced at the bottom of listings of communities.    Your title would be a great title for a post.   As you can see..
"Hepatitis C: After SVR, Improving Liver Health" seems like a odd posting under "Hepatitis C:  Post treatment Issues".   Even tho it's an "Issue".
"Issue" in the title sounds like a "problem".   Maybe just omit the word "Issues".  

It might be an option/benefit  for those who have had bad experience with interferon to start a "users group".  

[patra_]

A better choice might be, like the post tx is now,


               Hepatitis C: After SVR, Improving Liver Health

That way, the community would be listed with the other Hep C communities.

[dontworry_behappy1]

Nope!!!!!!   After reading a recent post.  What is needed is a community for
Ribivian and Interferon.   These guys have issues and cause negative posts.

[dontworry_behappy1]

http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/Hepatitis-C-Treatment---6-Months-Past-Treatment-and-Beyond/show/2428644

[dontworry_behappy1]

Maybe the title of " Hepatitis C Post Treatment Issues"  Should be changes to "Hepatitis C After Treatment".   I find that the title is confusing to people.
"Post" is also confusing to people.  "Hepatitis C Cured - Survival Kit To A Healthy Life/Style".   " Hepatitis C Post Treatment Issues "  Attracts negative.  May be there should be a community just for "Hepatitis C post interferon issues".  
and change the existing post treatment forum created by Dee to " Hepatitis C Cured - Survival Kit To A Healthy Life/Style".


  

[Livelife777]

Personally I think our new "Community" should be upbeat and positive.  Instead of being a post treatment problems (sounds kinda negative) perhaps
a title similar to "Life after Hep C" and focus on our accomplishments not failures, including goals for the future.  Of course not everyone will have positive outcomes post SVR, but give support and encouragement to those that are still struggling.
Since we are all a team it should include everyone.  Post transplant, fibrotics, and cirrhotics.  All of us have been impacted by this disease.  Now that many of us are becoming cured we have no idea what to expect.  Keep in mind a few of us were born with Hep C and up until now have never lived a day virus free.  It can be overwhelming to face an undetermined future for many of us.
This new forum would not be intended to diminish the other valuable "communities" but rather a complementary addition.  Linda this is your baby and feel you will make this a much needed asset.
......Kim
BTW. Just some thoughts to ponder.

[dontworry_behappy1]

Are you talking about "users groups"?  It's at the bottom of the list of communities.  

[Dee1956]

Hi I had hoped this site would be for people after tx

http://www.medhelp.org/forums/Hepatitis-C-Post-Treatment-Issues/show/1670

[hepcandme]

MH calls then communities

I belong to

Hep C Community
Hepatitis Social
Cirrhosis of the Liver
Hepatitis C Post Treatment Community

I think what would make this community unique is that it would not focus on the newbies, the dying, symptoms of treatment

but on:

1) A forum for those who have achieved SVR
2) Research and anecdotes or happy endings about livers actually improving after the virus is gone
3) Strategies that have worked for others to improve liver health
4) Hope and encouragement about how one's liver really can improve over time
5) Science and data and more science and data

[dontworry_behappy1]

I guess you can join groups without invite.  Sorry

[dontworry_behappy1]

Are you referring to forum or a group.   These are two different areas.  I would think that "cirrhosis of the liver"  forum would cover what you are referencing.
A group is a way for you to discuss a subject with those who are a member of the group.   A group called "SVR Hepatitis C Cirrhosis"  for example can discriminate who can join the group.  Not everyone can join these groups with
out invitation or approval.  

Your right about the SVR without cirrhosis is a different lifestyle post treatment.  Honestly, I thought that those who still have cirrhosis move over
to the "Cirrhosis of the Liver" Forum.  

FYI:  I don't think anyone goes without the  effected by Hepatitis C and treatment mentally or physically.   Everyone gets dealt a different hand.  
  

[hepcandme]

I am not sure
What do you think? Some, after reaching SVR, seem to go on with completely normal lives
They drink, have great energy and are not plagued with the continued sides of cirrhosis - ascites, edema, headache and fatigue - just to name a few
We are also still at great risk of developing liver cancer and are tested every 6 months for the rest of our lives
Let's see what others think as well
Hopefully we can bypass the odd and insensitive questions that plague the Hep C  group by narrowing our focus to How to Live with liver disease  post SVR

[OdinLovesLife]

Define serious fibrosis :-)