Aa
liver !!!!!
You are all real clicky!!!Shame on you.
I'm clicky.
Sitting in a dark room, hep c cloud over my head, bent over this electronic box, searching for salvation, click after click after click.
LMAO - you couldn't have said it any better - I am now going to bed with a little less cloud over my head - that belly laugh made the clouds scatter - Thanks
Trin
Sitting in a dark room, hep c cloud over my head, bent over this electronic box, searching for salvation, click after click after click.
LMAO - you couldn't have said it any better - I am now going to bed with a little less cloud over my head - that belly laugh made the clouds scatter - Thanks
Trin
I'm clicky.
Sitting in a dark room, hep c cloud over my head, bent over this electronic box, searching for salvation, click after click after click.
ewww...that was morbid. Glad you didn't give up and got some response here. This is a great place to learn and it seems there is always someone that can relate. Good luck to you and god bless.
Sitting in a dark room, hep c cloud over my head, bent over this electronic box, searching for salvation, click after click after click.
ewww...that was morbid. Glad you didn't give up and got some response here. This is a great place to learn and it seems there is always someone that can relate. Good luck to you and god bless.
I am an old timer here... I go back probably four or five years, and yes at times it seems clicky...but as others have said it depends what you write and what you are looking for. The board is a great source of info, and sometimes just a great sounding board..
My husband is also a stage 4 cirrohis, and is currently on his fourh round of treatment (Alinia trial)
Jim offers you good advice to find a doctor (hepatologist) affiliated with a large teaching hospital. Go from there..look for support groups in your area they can also be a great source of info..good luck and please forgive those who were clicky. We are actually all here to help each other and ourselves..
su
My husband is also a stage 4 cirrohis, and is currently on his fourh round of treatment (Alinia trial)
Jim offers you good advice to find a doctor (hepatologist) affiliated with a large teaching hospital. Go from there..look for support groups in your area they can also be a great source of info..good luck and please forgive those who were clicky. We are actually all here to help each other and ourselves..
su
It is always difficult to be new and hoping to connect with people that understand and can help. It is always the case that when you are a new member to anything you notice the people that know each other well and have some history. It is awkward building these relationships and knowing how to navigate in a new situation. This is no reflection on any deliberate attempt for people to exclude, its just that people simply know each other and understand each others history. With time, you too will be part of the group and understand each others reasons for being here and know how to help others and get help. I have felt nothing but a desire to support and help here. I have felt some peoples agendas in there responses, rarely, to my issues. But at the heart of it people here are trying to support each other. Given time, you will be sooo thankful for these individuals.
I am new here also...I really didn't take it to heart when I didn't get many responses..I just keep posting and just trying to make myself known. Way I figure is if I make enough posts...someones bound to eventually say something. The only thing I know about transplants is a good friend of mine named Jerry, has had 2...One didn't take and now he is doing okay after the second one.
Welcome
Welcome
----------
As to your question -- as your PCP suggests, you need some real guidance moving forward from a liver specialist (hepatologist) who is attached to a large, teaching hospital such as in Gainsville or alternatively with Dr. Eugene Schiff's group in Miami. In the end, they will be the only ones who can answer the difficult questions you pose to the group. Your current gastro is probably over his head in this which is not surprising since transplants are not in his area of expertise.
I truly hope you find help in your difficult situation and be a bit more patient and realistic what you can expect here. If you google "Janis and Friends", I believe they have a special transplant group there that can also be helpful.
-- Jim
As to your question -- as your PCP suggests, you need some real guidance moving forward from a liver specialist (hepatologist) who is attached to a large, teaching hospital such as in Gainsville or alternatively with Dr. Eugene Schiff's group in Miami. In the end, they will be the only ones who can answer the difficult questions you pose to the group. Your current gastro is probably over his head in this which is not surprising since transplants are not in his area of expertise.
I truly hope you find help in your difficult situation and be a bit more patient and realistic what you can expect here. If you google "Janis and Friends", I believe they have a special transplant group there that can also be helpful.
-- Jim
You are all real clicky!!!Shame on you.
--------------------------------------------------------
I've started threads where almost no one answers and I've been here over two years. I've also seen first time posters get dozens of responses.
It has nothing to do with this place being "clicky", it's simple a matter of what the subject matter is and who happens to be around at the time.
As stated, not too many of us are knowledgeable about transplants and for that reason many don't even read a post with "transplant" in the heading.
That said, there are a few who are knowledgeable about transplants and almost always respond, except they are not always around. You only posted this today, remember?
Do you remember my recent post about "Barrett's esophagus"? I didn't see YOU respond. Maybe the reason you didn't respond was because you didn't know anything about Barrett's and/or have no interest in it. No problem, many shared your view and therefore very few posts. Or maybe you just didn't see my post. That's OK, I don't take it personally that you or no one else is interested in my problems. Well, maybe I take it a little personally but I'm not calling the members here names. Yet.
I also didn't see you (or anyone else) respond to DoubleDoses' post (except DoubeleDose(DD)) about inter (or is it intra) familial transmission in Egypt or some place like that. Maybe, because like with Barrett's, just not enough interest in what's going on behind the closed doors of Egyptian families (g*d bless them) -- but it has nothing to do with being "clicky" and I'm sure DD doesn't take it personally nor do the Egyptian familes who happen to be under-represented here.
Anyway, in case no one told you -- you're not going to make many friends in a discussion group by calling everyone here names the first day you start posting. And do not be too shocked if people start calling you names back because discussion groups are sort of like school yards for better or worse.
Fortunately, no one here holds a grudge very long often because many of us have brain fog from treatment and really can't remember things all that well. So, if you post tomorrow -- maybe without the name calling part -- you may just catch some people who know something about transplants.
(continued on next post...)
--------------------------------------------------------
I've started threads where almost no one answers and I've been here over two years. I've also seen first time posters get dozens of responses.
It has nothing to do with this place being "clicky", it's simple a matter of what the subject matter is and who happens to be around at the time.
As stated, not too many of us are knowledgeable about transplants and for that reason many don't even read a post with "transplant" in the heading.
That said, there are a few who are knowledgeable about transplants and almost always respond, except they are not always around. You only posted this today, remember?
Do you remember my recent post about "Barrett's esophagus"? I didn't see YOU respond. Maybe the reason you didn't respond was because you didn't know anything about Barrett's and/or have no interest in it. No problem, many shared your view and therefore very few posts. Or maybe you just didn't see my post. That's OK, I don't take it personally that you or no one else is interested in my problems. Well, maybe I take it a little personally but I'm not calling the members here names. Yet.
I also didn't see you (or anyone else) respond to DoubleDoses' post (except DoubeleDose(DD)) about inter (or is it intra) familial transmission in Egypt or some place like that. Maybe, because like with Barrett's, just not enough interest in what's going on behind the closed doors of Egyptian families (g*d bless them) -- but it has nothing to do with being "clicky" and I'm sure DD doesn't take it personally nor do the Egyptian familes who happen to be under-represented here.
Anyway, in case no one told you -- you're not going to make many friends in a discussion group by calling everyone here names the first day you start posting. And do not be too shocked if people start calling you names back because discussion groups are sort of like school yards for better or worse.
Fortunately, no one here holds a grudge very long often because many of us have brain fog from treatment and really can't remember things all that well. So, if you post tomorrow -- maybe without the name calling part -- you may just catch some people who know something about transplants.
(continued on next post...)
Hi Carol, my name is Cathy. Come back to the playground, I have a good hopscotch rock.
And I was trying to be humorous in my statement --- Please know I have a whacked sense of humor.
Anyhow- seriously - please feel free to join in --- and if the perception you got was a bad one --- could you PLEASE close your eyes --- count to ten --- and look again?
We have some FABULOUS folks on this board.
Anyhow- seriously - please feel free to join in --- and if the perception you got was a bad one --- could you PLEASE close your eyes --- count to ten --- and look again?
We have some FABULOUS folks on this board.
EH?
I'm sorry - I can't hear ya above all the cliquing...
Oh...
Actually some are - some are not --- if you wanna join in - please do.
But if ya don't like it --- There are some other fantastic boards to become a member of.
The folks here have a main core --- which changes monthly -- but there are a few of us who hang around and come back and chit chat....
We become like a family - knowing each other and helping others.
Sorry if ya got that impression - but please - feel free to join us.
Meki
I'm sorry - I can't hear ya above all the cliquing...
Oh...
Actually some are - some are not --- if you wanna join in - please do.
But if ya don't like it --- There are some other fantastic boards to become a member of.
The folks here have a main core --- which changes monthly -- but there are a few of us who hang around and come back and chit chat....
We become like a family - knowing each other and helping others.
Sorry if ya got that impression - but please - feel free to join us.
Meki
You seem to be getting some fairly rude and dismissive posts, I am sorry for that. The Internet can bring out the worst in all of us. Just ignore the smart alecs, they are either bored or mean spirited and who needs them anyway. Listen to all those that expressed concern and a wish that you would stay and get to know us better.
I have not posted much but I have been lurking for awhile and in general this is one of the kindest and most civil forums I have ever seen.
I had cirrhosis and had a liver transplant. I feel better than I have in ten years, there is hope for you, but you do have to get the facts.
Good luck, and mau God bless.
Bob
I have not posted much but I have been lurking for awhile and in general this is one of the kindest and most civil forums I have ever seen.
I had cirrhosis and had a liver transplant. I feel better than I have in ten years, there is hope for you, but you do have to get the facts.
Good luck, and mau God bless.
Bob
Thank you, Comeagain, for saying something so sweet.
Not everyone who posted on this thread may be aware that cammie posted three times today. Her first one described a very desperate situation, with cirrhosis and previously failed treatment and she kindly asked for help. The forum was very active today, with continual activity but noone answered her, including me. I just didn't have a clue what to say but I probably should have at least said that. Seven hours later, she again asked for help, for the second time, but noone replied again and then she posted a third time in frustration. That's the context. I can see how she felt -the 'new neighbours' weren't even waving.
Lots of people are away at work during the day, so it's a wonder to me that they come home and take the time to participate at all. It's a testament to people's generosity and I personally never cease to be amazed. Cammie couldn't have seen that, though. What she saw, hour after eleven hours was that there were dozens of replies to other people but not to her. It was just one of those days when almost everyone seemed to be on one particular thread for good reason but cammie would have only seen that people reply 'by the minute' but never to her. I think it falls short for someone to simplistically suggest that with the medical issues she has - failed treatment and cirrhosis - that she'd be better served in a social forum. Thanks, Comeagain, for being so nice to people and making your point without insulting them. You never do take us to the dark side, do you? :)
Not everyone who posted on this thread may be aware that cammie posted three times today. Her first one described a very desperate situation, with cirrhosis and previously failed treatment and she kindly asked for help. The forum was very active today, with continual activity but noone answered her, including me. I just didn't have a clue what to say but I probably should have at least said that. Seven hours later, she again asked for help, for the second time, but noone replied again and then she posted a third time in frustration. That's the context. I can see how she felt -the 'new neighbours' weren't even waving.
Lots of people are away at work during the day, so it's a wonder to me that they come home and take the time to participate at all. It's a testament to people's generosity and I personally never cease to be amazed. Cammie couldn't have seen that, though. What she saw, hour after eleven hours was that there were dozens of replies to other people but not to her. It was just one of those days when almost everyone seemed to be on one particular thread for good reason but cammie would have only seen that people reply 'by the minute' but never to her. I think it falls short for someone to simplistically suggest that with the medical issues she has - failed treatment and cirrhosis - that she'd be better served in a social forum. Thanks, Comeagain, for being so nice to people and making your point without insulting them. You never do take us to the dark side, do you? :)
try the other side it's more touchy feely over there if that's what you are looking for. Your judgement does seem a little hasty and sharp, shame on YOU. jerry
I looked at you profile saw what you are facing, you write in here looking for a straw of support nobody answers in hours.
My heart goes out to you.
Theres a lot of good people here some days maybe a whole week it can seem a bit shallow and if you your self is in a dead serious mood you can easely get frustrated and wanna just come out of here.
But girl, stick around theres a lot of blessings for us all here.
ca
My heart goes out to you.
Theres a lot of good people here some days maybe a whole week it can seem a bit shallow and if you your self is in a dead serious mood you can easely get frustrated and wanna just come out of here.
But girl, stick around theres a lot of blessings for us all here.
ca
I have no idea where that comment came from, but I'm sorry if you're frustrated.
I am very outgoing, by nature, but it has to be within my comfort zone.
My comfort zone is people over 80 who live in a nursing home. Really!
I read a lot before I started posting. I felt nervous asking questions. I felt like I didn't have much to contribute, nor did I have the brains, intelligence or wit to post comments on this board......
It all seems so juvenile now, that I would even care, or let others opinion about me affect me.
I have a life!
I have friends!
I reverted to jr high school behavior when I came to the forum!
Feeling shy stupid and ignored....
dont be juvenile like me.
grow up and learn from others through communication.
Sorry if you feel ignored. I usually don't post on this side, the "brainy" side. I have more fun on the hep c social forum.
Take care,
Bug
I am very outgoing, by nature, but it has to be within my comfort zone.
My comfort zone is people over 80 who live in a nursing home. Really!
I read a lot before I started posting. I felt nervous asking questions. I felt like I didn't have much to contribute, nor did I have the brains, intelligence or wit to post comments on this board......
It all seems so juvenile now, that I would even care, or let others opinion about me affect me.
I have a life!
I have friends!
I reverted to jr high school behavior when I came to the forum!
Feeling shy stupid and ignored....
dont be juvenile like me.
grow up and learn from others through communication.
Sorry if you feel ignored. I usually don't post on this side, the "brainy" side. I have more fun on the hep c social forum.
Take care,
Bug
If you move into a new neighborhood you would have to get to know people. this takes time. you just joined this forum and you make a statement like that. it makes you sound really stupid! the bottom line is if you want the best heapatitis information on the net then hang around otherwise thanks for stopping by. best of luck to you whatever you decide.
PS, there is a good website that is more of a "hand holding" kind of forum. check it out, it may be perfect for you. http://www.janis7hepc.com/index.htm
PS, there is a good website that is more of a "hand holding" kind of forum. check it out, it may be perfect for you. http://www.janis7hepc.com/index.htm
You've been a member since September of this year. Can you actually justify your statement that we are clicky in that short of a time? You must think you are extemely perceptive of other peoples intentions. We all share one common bond. There are people on this board that post everyday and I've never had a conversation with them. I don't think their clicky and I've been a member for a year now. Ask questions, jump in on threads, make yourself known, educate yourself, that's how we all get to know each other.
Trinity
Trinity
Hi there Cammy, welcome to the forum :)
I'm new here too and I hung about reading the boards for quite sometime before I was even brave enough to post! I can relate to how you feel as I also felt I had entered into a close knit community. It kind of reminded me of what it was like to be the new kid in the neighborhood, or at school, or the first few weeks in a new job.
At first I was a little put off but I decided to persevere and I've discovered there is so much wonderful support and advice here on the forum and I have found people to be incredibly forthcoming and generous once I dared to participate.
I hope you will choose to come back as it really is a great place to learn and share in and if you are treating or considering treating or just wanting to learn more the advice and comments you will read here will be worth their weight in gold to you.
All the best to you :)
I'm new here too and I hung about reading the boards for quite sometime before I was even brave enough to post! I can relate to how you feel as I also felt I had entered into a close knit community. It kind of reminded me of what it was like to be the new kid in the neighborhood, or at school, or the first few weeks in a new job.
At first I was a little put off but I decided to persevere and I've discovered there is so much wonderful support and advice here on the forum and I have found people to be incredibly forthcoming and generous once I dared to participate.
I hope you will choose to come back as it really is a great place to learn and share in and if you are treating or considering treating or just wanting to learn more the advice and comments you will read here will be worth their weight in gold to you.
All the best to you :)
Hi Cammie, Welcome to the forum - I'm a relatively new member too. I see you've non-responded to tx and have cirrhosis. There are others on this site who have had similar voyages and can share regarding future prognosis and/or new trials etc., You didn't mention your genotype??
Feel free to post any question that you have regarding what you're doctors are telling you and you'll find that strangers that lurk in the background here will suddenly step forward. The cumulative knowledge here is huge and everyone is doing their best to be of assistance to each other, especially when some of our medical teams are not always up to the mark. It also helps to know that others are facing the same challenges.
To write 'shame on you' to cyberspace, probably isn't helping anyone, and certainly isn't directed at anyone. I hope you get through to take advantage of what the site has to offer and post again to get some assistance in your decision making. God bless..
Feel free to post any question that you have regarding what you're doctors are telling you and you'll find that strangers that lurk in the background here will suddenly step forward. The cumulative knowledge here is huge and everyone is doing their best to be of assistance to each other, especially when some of our medical teams are not always up to the mark. It also helps to know that others are facing the same challenges.
To write 'shame on you' to cyberspace, probably isn't helping anyone, and certainly isn't directed at anyone. I hope you get through to take advantage of what the site has to offer and post again to get some assistance in your decision making. God bless..
Sorry if you have that impression. I just joined in late July and am relatively new like you.
I understand that some of the really devoted people here go way, way back in this forum. One day, you may feel that way yourself, if you put in the long, hard hours that some people do, tirelessly and generously. It's not a clique so much as a lot of history together. If you look closely, there's not just shared debate, words of encouragement and mutual worry but also conflict. It's not as rosy as it may look to a newcomer nor as tight-knit.
If you need support, you need support, zits included. I myself am a beggar, not knowing much about treatment but finding so much help here. I don't mind at all not being in the cool club (not that there is one!) and in fact am happy just where I am.
I understand that some of the really devoted people here go way, way back in this forum. One day, you may feel that way yourself, if you put in the long, hard hours that some people do, tirelessly and generously. It's not a clique so much as a lot of history together. If you look closely, there's not just shared debate, words of encouragement and mutual worry but also conflict. It's not as rosy as it may look to a newcomer nor as tight-knit.
If you need support, you need support, zits included. I myself am a beggar, not knowing much about treatment but finding so much help here. I don't mind at all not being in the cool club (not that there is one!) and in fact am happy just where I am.
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