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475555 tn?1469304339

Last chance?

Dear fellow medhelpers-

Since the Medhelp forums seem to be self-destructing, I thought I would take this chance, perhaps the last one I will have, to thank all the wonderful people here without whose moral and practical support over the years I might very well not still be alive.

There have been many: HectorSF, Dee1956, patra, hepcandme, hepc4Sandi, Faithdove, flyinlynn, Lovesmygolden, aqua1917, GrammyA, ZapFan, pugdaddy, Idyllic, BoceprevirGal, aheart, beatrice57, GoofyDad, Willy50, IAmTheWalrus, meki, CockSparrow, Gauf, Mary4now, jools57, evangelin, orphanedhawk, Trinity4, jdwithhcv, rita863, Lady Lauri, GSDgirl, jmjm530, JennyPenny2009, mikesimon, newleaf09, Isobella, HCVet, copyman, susan400, JimmyMose, Bali05, nursehepc, nan535, merryBe, Marcia2202, Rockerforlife, nygirl7, Trish77. . . and the list goes on.

You have been my family for the past eight years. The best family anyone ever had. I owe you my life and I hope I have been able, in a small way, to repay your kindness.

God bless you. May you be well and happy.

I love you all.

Michael
22 Responses
408795 tn?1324935675
Wow!  That's really nice of you, by naming some of them members you really brought back some really good memories for me.  Alot of them are very old school members that were extremely helpful and those were the days when people really needed support b/c of that nasty a$$ interferon and Riba!  Arghhh!  Trish77, Isobella, rita863, Marcia2202, TheWalrus and who could forget GoofyDad?  GoofyDad was one of the funniest members ever!  Hey Mike, did you reach SVR?  And what drug or drugs did you take?  I remember you stayed in a central American country or Argentina, right?  I mean you live in NY or something but you actually spend more of your time in Buenos Aires?  Yeah I remember Hector, he helped you a lot.  He will be missed in a big way by many, many ppl.  
6708370 tn?1471490210
What a lovely sentiment. Thank you for the warm and thoughtful post. I too have so many to thank. It's tough having an "invisible" disease that will likely kill you. All I can add is that I believe that those facing treatment and recovery now have such an easier time of it. We are all so grateful for that. The old timers who just went through hell with very little chance of being cured, they are my heroes. And everyone here who provided a supportive word or a shoulder to cry on, who gave me strength to carry on until I reached SVR, Thank you! Including you Mike. Carry on and enjoy life. Be well, my friend
~ Linda
7469840 tn?1409845836
Wow also! I have been thinking about you. Hope you are doing good, and dancing through life. Tx seems so long ago, but I never forget the people here who helped me through it, and you were one of those people. If you are ever back stateside please give me a call! I drop in here occasionally to see if there is anything I can contribute, though no one does the triple Tx I did anymore, but I have no regrets about doing it then, since I SVDrd, and the Sx from treatment are slowly receding over time. Take care Mike, Sandi
317787 tn?1473358451
Dear Mike, thank you. So many memories, so many old names.  When I finished tx, got to SVR I wrote to every friend on here, thanked them.
It took a long time, each note was personal.
I appreciate you writing this Mike.  I feel exactly like you do.  I fear for the people coming behind us.  Dr Dietrich said that by 2020 HCV will be in epidemic proportions, as peoples livers begin to fail they will discover HCV..  I wonder where they will go for help?
Can't write any more right now...tears clouding my vision.
475555 tn?1469304339
Hi, All.

I've had a hard time finding your replies because the new website isn't showing them. But Dee1956 sent me a work-around URL and with it I just found the complete thread.

I fear that the private messages section of Medhelp will stop functioning, so I'm exchanging email addresses via PMs with whoever wants to keep in touch.

To answer fretboard, I did achieve SVR. At least I think so. I haven't seen the EOT+12 yet. I did Sovaldi+Olysio a year ago in NYC. I was very lucky. I got the meds on the patient assistance program.

One thing we can all do is to send an email to Aptus Health (***@****) asking them to stop ruining the Medhelp website. It's already half trashed and if they keep it up it won't be of any use at all pretty soon. I doubt they will pay any attention to requests to stop, but one can try.

We who have been cured should not forget that there are many who haven't, or whose livers were already too damaged when the new meds came along (like HectorSF), or who don't even know they are infected (as Dee points out re what Dr. Dietrich said). So the loss of Medhelp as an effective patients' network is a real tragedy.

Let's hope that Medhelp can survive the present attack by the marketers.

Mike

683231 tn?1467323017
Hi Michael
Thanks for your kind thoughts and remembering us all
Best to you as well
Lynn
317787 tn?1473358451
I know that this site saved my life, without it I could not have gone through the Incivek.  All the people here helped me to take one day at a time, one shot, one pill at a time.  There were weeks I would sit with the syringe in hand and cry because I had to force myself to take yet another shot.  I love all of you for caring enough to help me through the awful Incivek tx.
The woman who co created MedHelp (Cindy) would love to hear from you.  She sold the company two years ago as it was time to retire.  

http://www.medhelp.org/personal_pages/user/17568
317787 tn?1473358451
Very odd, I could not see the responses in the new forum so went to the old to tell you they were responding, now I don't see my response from the old  Something weird going on.
Avatar universal
Hiya Micheal. Thanks for the memories.
There were so many old friends and frenemies. : )
I would also add mremeet, eureka, child24angel, foreseegood, Andiamo, doubledose, alagirl, cowriter, trinity, bill1954, portann, Mrliver, jennypenny, SFbaygirl and many others. Sadly, there are a number who are no longer with us (or their loved one).

It was the best of times, it was the worst of times. It was a lovely meeting of souls, needs, information and opinion. Where good treatments did not exist, that lacking was made up with human kindness and effort. It serves as a reminder of what people can accomplish when they work together.

The current problems with the forum is in large part due to the success with the current drug regimens. It's a good thing, and yet I write it somewhat wistfully.

Yes, thanks for the mention and the memories.
Onwards and upwards.
1 Comments
Hey, Willy, long time no see (grin). How are you, guy? How's the liver? Still on your spiritual quest? You're right, I missed naming a lot of people. But there were so many wonderful people in Medhelp back then. And I miss them all. Good luck and a good life to you, Willy. See ya round.

Mike
317787 tn?1473358451
So good to see you Willy, this was my home for so many years, I am glad the new treatments are easier. Bless you all!
317787 tn?1473358451
Dointime just got to SVR!!! See status
Avatar universal
Yes Dee, done my time.  And the end of an era in so many ways.

I've been around here for almost a decade.  I've had long term relationships here that were more rewarding than in my 'real' life.  Willy50 is right - what happened here will not happen again because people are getting cured fast and moving on.  It's like the old bundle of letters from a friend that I found while clearing out a closet the other day.  Now that there is email, there will be no more bundles of old letters.  The times change.

So to the old timers - you know who you are.  I smile when I remember the excitement of my early days here when I couldn't wait to log on and read goggle eyed the latest news and controversy, then add my humble opinion to the mix.  I remember the people who got me through and most probably saved my sanity in the times of terror and hopelessness.  I'm not glad about the hepC but it's an ill wind that blows no good.  I learned so much here and most of it not about hepC at all but about people and life.

Thanks Mike for posting this thread.  You so rightly mark the passing of the 'warehouse' generation.  We went through so many false dawns before the sun finally rose on the DAAs.  Thank heavens those days are over.  But it was really sumthin'.  Wasn't it.

done-my-time            
1 Comments
Dointime and I met long ago, and became better acquainted over time. We go back a ways; 2006, early 2007 I think? Vertex early phase 2 trial.

I was first diagnosed 13 years ago, and only was cured about 3 years ago. As we have hung around forums for years we have definitely seen a lot of people come and go. It has been a great instructor, about HCV, treatments, and so much more that is not related to HCV.

HCV has been apart of almost 1/4 of my life. I didn't need the infection, the being sidetracked, the disruption of what was a "normal" life, but in the balance this forum....and others have given me back certain things that benefited me, and in a way made my life better and less ordinary. There has been lots of good with the bad.

The "good" was always the people I've met. It's like the old story "Stone Soup"; we each bring something and threw it into the pot, and the ultimate meal was great.

It's great to see my experience on HCV boards early on seeing dointime taking a swing at the very 1st DAA trial, and now (finally) cured with one of the most efficacious treatments available. At long last.

Congrats and thanks old friend.
Wishing us all a smooth transition into *normal* uninfected life. Part of me though, will forever be one of the legion. ; )

~w
317787 tn?1473358451
Thank you so much for what you wrote, you and Mike have expressed my feelings and then some.  It also helped me understand what Willy was saying.  I had not thought of it like that before.

I just happened to see your status on recent activities as the friends feed is gone.

I wanted others to know that you had finally gotten to SVR.  It is the end of an era.  With Hector dying June 28th that seemed to start the ball rolling for me.  Then to find out this is it, this is MH now, ain't no going back.  I grieved even more.

Thank you all so much!  Thank you for my life, my sanity, the camaraderie of people desperately trying to live, helping one another through the trenches.
I now understand the phrase
"it was the best of times, it was the worst of times"

317787 tn?1473358451
Thank God for the new treatments, perhaps people won't need help like we did.  I pray that's true and if so hope they find a warm and welcoming place like I did.
I was blessed to find MH when I did, it was teaming with activity. So many people needed help, 24/7
475555 tn?1469304339
I see that Aptus has removed their email address from my previous post. Wouldn't you know it? In any case, if anyone wants to email them with some choice words about the new website, their email address is on their website.

The replies in this thread have been wonderful and have brought tears to my eyes. Yes, things were very different in the old days. We didn't know what was happening, whether we would ever get cured, whether we would live or not. We clung together and it made life bearable. A never-to-be-repeated experience, it seems.

As dointime says, "I've had long term relationships here that were more rewarding than in my 'real' life." As a matter of fact, my relationships with medhelpers eventually replaced my friendships in the "real" world, since poeple who haven't had hep-c just can't understand what it was like living with this disease.

What can I say to you all except, as Willy said,  "Thanks for the memories"?

Mike

1 Comments
Mike, I was in a forum in 2003 which had a thread that purported that genotype 1 could not be cured with IFN and RBV.  I didn't quite believe it to be true, and yet no one knew a cured G-1.  Yes, I didn't know if I would survive either, and I surely have lost friends and internet friends to the disease as time passed by. It makes for a strong glue.

https://www.youtube.com/watch?v=qkT8RXEJlcM&spfreload=10
317787 tn?1473358451
Willy, so good to see you here, I have missed you. I always loved to read what you thought about a particular subject.  You seemed to be able to cut right down the middle of any conversation to give us good, clear objective advice.
Thanks to every MH member on here.
You are all the greatest people I have ever met and as Dointime and Mike said above, people here became closer to me than my friends or family. No one can know what we went through but another patient from that era.
Thank you
1 Comments
Thanks Dee. It is nice to drop back in. I still read forums but mostly lurk. It saves me oodles of time and I am always behind. Something had to give.

I do read from time to time.
Hectors passing brought me back in, maybe to say hello, touch base with people and pay respects to some.

In 5 more years the forum as we know it will not exist. Forums all over are closing due to these latest advances in medicine.

Mike's thread also kind of lured me in to say hello. It was a great place back in the day. I guess we always romanticize the past, but the traffic and personalities was amazing. Didn't we have a great time in spite of the reason we were all here?

Wish we could have a great reunion. Perhaps it can happen one day. I'm 2000 miles from SF or I would drop in and see Hector off and shake some hands. Same deal; would like to see people on other ends of the country.
I went to a HCV retreat once and it was wonderful.

There is a bond that few understand. I see it in cancer survivors, AA and such. I suppose we are all connected by blood, so to speak.

Cyberhugs Dee. You were always a kind heart and great friend. It's very true what you, dointime, Mike and others have spoken about the bond.

xxxxxxxxx
~W

317787 tn?1473358451
Willy, cyberhugs to you my friend!
151263 tn?1243374277
Hello old friends, been a long time. I didn't know Hector very well, but I do remember him. I'm sorry to hear he recently passed - may he rest in peace. Despite the advancements in drug treatments, this disease still takes it toll.

It sounds like this forum is winding down based on what everyone's saying. Like others have already stated, this forum, and the very real people on it, were my lifeline during the battle of my life ten years ago when we stepped up to take it on during the early Vertex trials. I owe my life to many people who were once here, some that still are and one that is no longer with us. Thanks to all who may be reading this. Thank you for being my friend and confidant. Thank you for the human compassion and help. God knows I needed it! It pulled me through when I was all alone and in pain and emotional agony. It's really as simple as that.

I haven't kept up with the new treatments at all, but it certainly sounds like curing the disease has been downgraded to taking a handful of pills with mild side effects for a few months - without IFN or riba and all that it entails...AND with an almost certainty of being cured. That is incredible, especially looking back on those dark days. Days that can best be described as sickly, desperate insanity. And for those that haven't taken interferon, ribavirin and allergen inducing VX950 for almost a year, you'll have to take my word for it.

So I guess the PhDs in treating we all earned with those antiquated drugs is now obsolete. I think I know how a Soviet citizen who graduated in 1988 with a PhD in Communist political ideology must have felt just few years later. Oh well, it's for the better. Maybe this is proof that if human beings are capable of progress of this nature, it's a sign humanity has a brighter future than the gloomy news headlines leads us to believe. I hope so.

Well, I'm not much on goodbyes. I'll try and stop in once in a while as I have been for years. But if this place is going to the tumbleweeds, this may be it. So I'll say my goodbyes while I still can. Farewell old friends and may the wind always be to your back. God bless all of you! Signing off, Mr. E. Meet
Avatar universal
Hey, I've been gone for awhile. What do you mean the forum is self destructing and winding down?
I first joined the forum in 2007 when my hubby was diagnosed, and I was so inspired by Dee, Magnum, Hector, Can-do and others. I don't know if I could have survived hubby's dx and all the failed treatments and helped him make it to SVR just this year without the forum and all of you.
Advocate1955
1 Comments
Oh Ad! So glad to see you! I think of you often!
475555 tn?1469304339
Hi, Advocate1955.

I hope I'm wrong and that Medhelp survives. But between all the new Tx's, which can cure most people quickly with few if any side effects, and the changes to the way Medhelp works, making it more difficult to use, it looks like this forum is passing slowly away.

In any case, it's been an amazing experience to be a member of this very special online community. I have belonged to many online forums over the years, starting way back with bulletin boards and user groups, but the Medhelp hep-c forum has been the best of them, because of the wonderful people in it. Being ill with a life-threatening disease makes people more human, more responsive to others. Plus hep-c has been until recently a rather special disease in that it often takes many years to progress and keeps its victims up in the air, not really knowing what's happening to them. We needed to cling together and Medhelp allowed us to do that.

With the new drugs that has all changed. For the better, at least physically. Maybe not spiritually.

Cheers and long life to you.

Mike
Avatar universal
I too was in and out of this forum since 2007.  I remember most of you too, and a lot of you said some very helpful things when I needed it . I wasn't treating then ,  and was wisley told to wait if I could, for the better tx coming along , which I did .   I remember reading of all of the suffering a lot of you were going through. It was and still is in believable what some of you went through !  I thank you all for the help you gave me then and some recently too. Although Medhelp for hepc seems like a ghost town now . I just started  Zeiatier last week , and it is going well so far.  I wish the forum was still there for the support like it was . Best wishes  to all of you   God bless!
317787 tn?1473358451
Pitter, I am very happy for you.  That you could wait for a newer less harsh drug is amazing.  How are you feeling?  There are still people here supporting others though I completely understand Mike's feelings and am happy that everyone has come to a consensus that it is a two prong effect.  Easier tx and the changes to the forum.  Cindy, the previous owner said tha the HCV forum was once one of the largest as there just wasn't much support fo it.


I couldn't wait so did the insidious Incivek, UGH, topped of with Pegintron and Riba. Pegintron was so much worse than Pegasys. It took me years to recover from it.
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