The forum has slowed way down

[Upbeat]

I can remember many years ago this place was super active.  Now its down to a trickle.  It shows that Hep C is about done as a health issue.   I for one never imagined this playing out and seeing the death of hep c.  

Wising all SVR

[patra_]

Some of us will still be around (barring travel and crashing iPads, but that's a story for another time!) when you treat again.  So many of us are so grateful for the friendships we made here.  The encouragement through treatment, the commiseration when we had setbacks, that we will be around to keep those commections and to help others.

You sound discouraged in your last post.  Please know that we are here and we care!  Put a brave smile on your face, powder you one and know that things WILL get better!

PM me if I can help.  oh, that reminds me, I need to find out how to let MedHelp know my new e-mail address.  Ahhh, the technological challenges!

Blessings and a BIG virtual hug!

Pat

[susan400]

I've been around here for over 11 yrs!  People generally disappear from here after they've been cured for awhile and some go away weeks after a cure.  I just can't lurk on here or post often, because honestly, it's just too hard.  Yes, I do help out people with questions, as I pop in and out and when I was on treatment, I was here daily. But, I just get too depressed and need to move away from thinking about Hep C and do other things.  I know many of you can't understand why I don't just jump into another treatment and do Harvoni.  It's simple.... I'm tired of it all.... and also my husband's job is barely holding on by a thread and since my prescription drug coverage is through his company and his insurance just shelled out over $80,000 last summer on my last treatment (P.A.N. picked-up the rest), they aren't real excited about doing that again for a non-cirrhotic, non-late stage person w/Hep C.  If I was super motivated, I suppose I could fight for it, but, therein lies the problem, I lack the motivation to fight for it.  I've lived w/this for more than half of my life. I got infected in 1982-83 time frame at age 21-22. and I'm 54 now.  Before I was infected, I was already..., dragging butt tired because taking care of a newborn-to- age 2 little boy and w/a druggy/non-supportive first husband. So, I barely remember what it would feel like to not be draggy butt tired.  So, I push myself to go to gym, workout and then, come home and recover from that and somehow, I've managed to not progress in disease.  Some of that could be the 12 treatments (I'm sure).  Anyway, I'm pretty sure that whenever I do finally decide to treat again, that 98% of all the people I've met on here, won't be signing on here when I do that.  I don't blame anybody though, it's normal to want to move on in life to a more positive upbeat environment.    Take it easy..., ya'll.   Susan400

[hepc4Sandi]

I will be sticking around to help and encourage any newbies, especially as I had a rarer genotype. I am still around as I deal with post treatment issues. These meds are so new still that newbies will be needing advise still.

[Magnum]

Even if you're cured, I think it's important to stick around to help those who will join and ask questions, like a friend of mine I just told about this site. Even when I'm cured, I will be lurking and if I can help with any answers I will...

Magnum

[dontworry_behappy1]

Forum has slowed down to a crawl.  Will be interesting now that Gilead isn't handing out free treatments anymore.   Also, they started paying stock dividends on June 28.  

[AWorriedMom]

I agree with Ekkiemom. This epidemic is far from over. With the upswing in drug abuse we are seeing in many communities, I fear we will see many more young people become infected. Also, when a disease has a cure, people tend not to worry as much and adopt the attitude...."oh well, if I get it, I'll just take the meds".  Only time will tell how this plays out.

[orphanedhawk]

We really have no idea of how many people are walking around without a clue that they have the virus, That was me for many, many years.

I've had people who I 'met' on medhelp pm me telling me about other forums that they preferred.
A slow down here, I don't think means much of anything, really.  During the time I"ve been on this forum, I've seen the forum be busy and not so busy.

Many people once done with treatment, go on with their lives and no longer post. We wish them well.

As for the drop down box, I think I"ll pm the moderator and see what reply I get.

Be well everyone !
OH

[Dee1956]

While I agree things have slowed down unfortunately it is not the end.  There are a new group of kids that are doing heroin, it is becoming epidemic in some areas of the country.
The CDC should be ashamed that they have not done a better job of getting the word out.

[Dee1956]

Bob , I am so sorry.  I know that they know.  There is a court case about how they have known for a very long time that they gave veterans HCV
along with gama globulin injections and other injections.
This was all before they knew about HCV
I have also read that some Vets are now being treated with Harvoni so that is good news.
Take Care

[hepcandme]

I am so sorry to hear that bob but that's kind of how things were back in the day before they knew what Hep C was

There are, however, several people in this community who are vets and were approved for treatment with Harvoni by the VA

Do a search for VA or veterans and connect with them. I know that initially it was very hard to get the VA to come on board with the new treatments but that has changed for the better

Good luck with your treatment!

[1ybbob1]

I'm fighting the V A over the fact that I received hep C from transfusion during a back operation in 1973.  Didn't discover the stuff until the ealy 1990

[hepcandme]

Dee, oh good, at least we are seeing the same issues. I only belong to 4 groups but there is no elegant way to navigate between them

I will probably do what you have been doing - click on my own post to get to that group or else do the not at all elegant step of going to my profile and finding the group there

btw, we have totally highjacked this post to talk about tech issues

[patra_]

Strange.  Maybe mine would be like yours on the desktop, I don't know.  On the IPad, as I said before, there is a blue tripe across the top of the Forum, above the tree of helping hands, which shows several choices.  'communities' is the first and takes me to the full list.  

I haven't ever tried it from my profile to see my personal communities.

Of. ourse, you understand, in my case, it could be the operator (me!).  LOL

Pat

[Dee1956]

Under "MyMedHelp" there used to be a drop down for all communities you were members of.  It was a personal drop down there for everyone.  Also it is now difficult to know if I have a message as that option is limited
I was a member of several, you could go up to the drop down, click it and travel back and forth.
Now you have to go to your profile to find the communities and click on it.  It was inconvenient the first few weeks now I am used to it and I have dropped some communities.
People who only belong to one community would never know about it.
i.e. HCV, Social, HCV, Cirrhosis, Current Events, Liver etc.
Sorry was joking with Carl when he mentioned he could not find the social cause he couldn't find on his drop down :).

Another thing I do is click on my posts and go back and forth that way, it is either on my profile or home page, can't remember which :)

[hepcandme]

This is what shows in my drop down menu under communities. Formatted differently, of course. It's a list of every community on MH. I used to be able to access the forums that I belong to by using the pull down menu under My MedHelp

Diabetes
Type 1
Type 2
Prevention
General Health
Diet and Fitness
Women's Health
Men's Health
Heart
Heart Disease
Heart Rhythm
High Blood Pressure
Pregnancy
18 - 24 years old
25 - 34 years old
35+ years old
Mental Health
Anxiety
Depression
All Communities »

But now I have to go to my profile and choose the forum list there

[patra_]

Am I missing something?  I go to the blue band across the top of the Forum, above the tree of helping hands, click on 'Communities' and the drop down box comes is, if that is what y'all are discussing.

If it is something, then excuse me, don't mean to confuse the issue, just trying to help.

Pat

[Dee1956]

Carl, that is so funny! A secret society. I like that. I miss the drop down menu as well. I don't like having to go to profile every time I want to switch forums.. What a pain...but it is here to stay. Maybe it is to help MH get note clicks.  The last time there was a major change I was in the middle of Incivek, to say I was lost would be an understatement :)  I understand what Susan is saying.  There are still people here from years ago just not as many.  Also I have read that 75% of people with HCV don't know they have it yet so there will always be more people.  DWBH is right many people still believe they aren't at risk. Boy are they in for a surprise.  All of you are so great.  I am honored to be in your company. Dee

[Carlhcv]

Hi! It seems like there used to be a link under "My Med Help". Now I click on the "i" near the top left of the main forum and there is a link to the social forum. I'm active on a lot of forums, mostly boating, and this one is easily the hardest to navigate. I bet a lot of people don't know about the social forum unless they get a new post moved here and then have to figure out how to find it. Oh well, maybe that makes us a Secret Society! :)

[hepcandme]

Carl, I used to use a pull down menu from MyMedhelp tab to access my groups but now I must go to my profile to see the groups listed and then click on one of the groups from there

I gave MH some feedback but they completely misunderstood the issue, I believe. The tab on the upper left, where it says communities, that is pretty worthless unless you are just browsing for groups to join

Is that why you can't find the social group?

[Carlhcv]

And it doesn't help that they made the social forum so hard to find!

[Carlhcv]

I've noticed the slowdown in the two years I've been here. Some of us have become like family but I would like nothing better than to see this forum become obsolete and done!!! SVR to everyone! :)

[keepingOnkeepingOn]

No one really understands what a person goes through having this disease like another Hepper does. Family puts their own spin on it. They try but cannot know the journey we take. Undo stress is detrimental to helping the liver recover from this monster virus.
Trying to take it slow and easing into my new status. Post SVR12 has brought it's own set of new challenges for me.
***
It could be lots of those treating and 'cured' by S/O have gone to other more supportive forums. It could be some gave up and passed.
****
I used to have HCV. S/O kicked it's butt.
(1a-treatment naïve to treated with off-label S/O to 'cured'. Labs within range for the first time in years)

Who was it here that sometimes says relax and exhale? With the new generation of heroin addicts, yes they'll always be someone here needing support.
Everyone needs to be tested for the record. The "not me" crowd needs to realize it could be them. I need a sign for my car's back window that says "Get Tested".

[Ekkiemom]

I'm not sure why you think newbies won't stick around....I was new and I have stuck around....I would prefer to think that they will stick around like soooo many others have and give back after they have been to this site with all the caring people.  I don't think people are all that much different.
Just my opinion
Deb

[Ekkiemom]

Wow, I think just the opposite. I think that there are more than when I first came on. As was mentioned above there are millions who have not yet been diagnosed and have no idea that they are infected.  It will be a wonderful day when the dragon is no more.  I have noticed however that the generation after my daughter is fighting a new heroin epidemic in the upscale neighborhoods in my area. Too many OD's and too many big drug dealers, I hope to goodness there isn't an epidemic of new HCV cases.
Truth is I was an IVDU and the last thing I was worried about was sharing a syringe. I'm wondering if things have changed much...truthfully I don't think so....
Hope all is well with the community
D