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

[dontworry_behappy1]

I agree.  All in just a few years time big changes in the treatment of Hepatitis C treatment.  There are now college courses in Hepatitis C treatment.  Tons of education being offered.   The Hepatitis C information sites are popping up to assist those seeking help with hepatitis C treatment options.  

But the recommendation to test baby boomers is a recommendation.  Its not a mandate.   I know where people just refuse to be tested.  Where the doctor didn't even ask the person about being tested for Hepatitis C.  I had to demand that my baby boomer spouse be tested.  

What I have seen in my community is people still fear Hepatitis C as some
disease only drug addicts get and surely THEY couldn't have it.  So why
test for something like that.  

I had a neighbor's baby boomer daughter tell me her husband told her to stay away from THOSE people.   Of course I went into the speech about
how Hepatitis C isn't that easy to get but because of the baby boomer's
past practices you and everyone should get tested and there is a cure for
many.

Yes this forum has slowed way down.  But its clear Hepatitis C is far from
NOT being a health issue.  There needs to be people talking to people who
have this mind set that it couldn't effect them.   I have spent some time looking at community volunteer connections that might be available.  I have yet to come across a connection because there you go....nobody wants to talk about it.   It might be a topic in the drug culture, HIV and
those seeking public health assistance... but it hasn't gotten its message out to middle america like it should.  

Take the time to bring it up to you neighbor and you will understand the lack of personal communication needed to educate this group of "not us' public in denial.   I'm ready to do just that if the opportunity arrives.  

Theres still much work to be done.  

[Upbeat]

Yes lots more work to be done.  But its so much better. Can you imagine seeing TV spots  just 3 years ago.  New DAA'S that Cure almost everyone.  Think back before Riba.   I hope the dragon is dead and we are just mopping up.  

[AWorriedMom]

Please look for a message that I sent to you. TY.

[susan400]

I agree it's really slowed down ALOT!  I've been around here on and off since 2003.  I've seen people come and go.  Met lots of good people, then, as they cleared, they moved on with their lives, as they should.  But, in alot of ways, it does make me miss the comraderie of my group of friends.  There were people that were here for a few different treatments lasting anywhere from 24 to 72 weeks. Some of these people I posted with for a few years in a row and then, they trickled out, moved on, and I never heard from them again.  I understand that, I really do.  I've taken breaks off of here before as I felt like I needed to because I was getting too down in the dumps and I felt like I needed to step back and forget about HepC and remember that there is more to life than Hep C.  Anyway, just my 2 cents worth.  Susan400

[Rbeth]

I'm so glad you posted! In my heart, I can't imagine, that if I've been fortunate enough to be treated, no matter what my outcome, that I would ever not want to be available to others, not to mention our common bond & friendships built! So, I'm really glad you were so real in your post!! I also am thankful for DWBH's strong, caring and very truth filled post!! There are so many yet to reach!!
Thanks to both of you, for a lot!
Many blessings,
Randy

[orphanedhawk]

I'm not sure if I agree that the reason this site has slowed is due to hep C slowing as well.
There are a lot more sites available to people now than there were years ago and some prefer those.
.

[hepcandme]

I always worry that some regulars have died. How would we know, really, if that were the case?

If one goes into hospice, it's not likely you would be spending your last few days on a support group site

Hawk has a point too. There are many other sites that I have checked out

But this one is hands down the best in my opinion because of the level of discourse, the research shared, the heartwarming level of support from others

It's the site for the Advanced Heppers - not in terms of illness because that's all over the map, but in the level of engagement and knowledge

[susan400]

I've looked at other sites over the years, but still prefer Medhelp....  I'm sure others have a different feeling, that's okay, we're not all cut from the same cloth and that's what makes people interesting.  If we were all alike, wouldn't the world be a boring place? I think so.  Susan400

[Magnum]

What's interesting to point out is, that while a lot of us are being cured with Harvoni that have failed before, there are many many who have Hep C and don't know it. The unfortunate thing about those people, is that when they start to get sick, fatigued and develop other symptoms, many will blame it on other things, like working too hard, depression, the flu and more. So quite a few are bound to develop Cirrhosis, and the cycle will start all over with more people posting here. It's inevitable in my opinion.

Mag

[susan400]

I agree that there will always be 'newbies'', but they won't be sticking around after they get clear in 8-12 wks, like these newer drugs are doing with the new developments. They get clear, move on.  Where as in the past, when the drugs weren't as good and the treatments lasted longer, people stuck around here for years, waiting around to hit on the right treatments, get cleared, etc. Now, it's not like that.  You don't have the length of time, getting to know people, before they are out of here. I'm happy, that people are clearing and moving on and not getting sicker.., even people like you and Hector post transplant, are getting clear.., which is amazing.  I'm just saying that I miss the support of my former tight knit group of friends.  I thought I was going to be one of the people moving on, when I finally got clear last summer.  Yes, I know about Harvoni, but I'm not ready to take on another treatment yet...  Anyway, how are you doing? When are you supposed to have your surgery done?  Hope your news is good.  Susan400

[Magnum]

Surgery is scheduled for the 2nd. All tests completed. I was cleared by the Pulmonologist and cardiac specialist. One has to go thought these tests regardless of what one may say to a doctor that these tests aren't necessary because "I fell fine", because surgeons are terrified of lawsuits if the unexpected happens because of an existing condition that was not tested for. So, now I wait for the time and wait for recovery so I can go back to full time entertaining. I hope you're doing well...

Mag

[susan400]

Thanks for the update, Magnum.  I'll be keeping you in my thoughts and prayers.  Let us all know when you're back up and entertaining and we know then, that you're okay!  Susan400

[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

[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

[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".

[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! :)

[Carlhcv]

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

[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]

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! :)

[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

[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

[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

[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 :)

[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