Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 -----Original Message----- What do you think of this idea? As an off shoot from this group, somewhat like the mom's group? I don’t know what has been happening to this group lately, but IMHO it isn’t good. First an uproar over news & studies (apparently for no reason except to gage how people feel about a non-issue). Now, talk of spinning off another group. What’s next? The mom’s group was started because Pam offers a very special insight and years of experience with kids (their PSC course is different) and because she knows all the ins and outs of school and behavioral issues. There are so few kids in this group and so many adults that her idea of not bothering the adults with these issues (that they will never face) was a good one. (By the way, the mom’s group goes for weeks without a single e-mail being posted). If we spin off a transplant group, what’s next? A listing group just for those listed? A re–transplant group for those who have been transplanted more than once? The four stages groups? A group for those whose PSC has returned, but aren’t listed yet? Those with cirrhosis? LDLT group? The list is endless! I’m afraid we could end up a very divided group. Putting divisions aside for a second, IMHO the single most important thing about this group is knowledge. My son is listed, I want to know everything about transplants, good or bad so I can be ready. If you spin off, guess what? I’m going to join your group too unless you stop me – so will a lot of others. So what’s the point? 99% of us are going to have a transplant at some time, we want to learn from you and keep in touch with you. Didn’t we all learn together before your transplants, didn’t you learn from those transplanted before you? Where did that happen? In this group! Besides, even though we haven’t been through a transplant yet, or are caregivers, doesn’t mean we can’t offer help, comfort and support to those of you who have. Another thing, (might as well get it off my flat chest while I can) IMHO, stop this insane worrying about how other people feel. Every one of us knows about the cancer risk, that it’s major surgery, that we could lose a loved one before or after transplant, the skin cancer risks, that PSC returns, etc, etc. We get it! When it’s our turn, we’ll either handle it or not, talking about it now won’t make a bit of a difference in our outcomes – except (and it’s a huge exception) that knowledge is power! Knowing about evil, doesn’t cause it, it protects you from it! If people get upset reading about someone’s troubles – delete it! The rest of us want to know. None of us wants another , Shauna or . So open up and talk away! Your experience is our best teacher. Be there for the rest of us, we’ll try and not make you regret it. Everyone is going to do whatever they want to….. my 2 cents….. I sure hope we stay together as PSC Partners. “Together in the fight, whatever it takes”. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Dear Arne, Thanks for getting it. I just got home and opened my mail and I seem to have started a firestorm. I am interested in getting people the most information that they need, efficiently. Which is really what prompted my musings on a TX sub group. In any case, I am also tired of having to wade through tons of messages, almost none of which are relavent to where I am now. I love this group and I don't intend to abandon it. You put it so well in your first paragraph - we have grown to a very large group with differing needs. I didn't realize that we could do sub topics. A great idea. I am up for hearing more about how we could accomplish your ideas. Let's keep talking about this. Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Is someone actually complaining about topics being too scary, or are we just being too hypersensitive here? Either way, it seems that if those who are post-tx are having difficulty writing candidly about their experiences or asking questions, then this group isn't meeting all of their needs. I think we need to try to understand, and respect their feelings and wishes, and wish them the best of luck on their other website, and I for one plan to join forces with them on the post-tx side soon. (Still waiting to hear from my tx team regarding my donor's evaluation.) Until then, I will lurk and learn as much as I think I can handle. Ali, , Maureen, & Joanne (and many others) I appreciate all the support and love you've given me and I hope and pray that you get what you need from the post-tx group. Much love and well wishes even though I plan to still see you posting here for us...for we have much knowledge to gain from you. You are all priceless! Sincerely, PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 That is exactly the point. When a group gets this large (nearly 1300 now), there are noticeable divisions in interest. It gets quite difficult to determine what you want to see and hope you don't miss what you really need. Yahoo! is well behind other forums in the ability to handle information topics. Most " modern " forums have topics underneath the main topic. For example, I belong to a canoeing forum, primarily focused on the Boundary Waters Canoe Area and Quetico Provincial Park. You would think all 1200 members might have the same interest? As a result, there are discussion boards within this forum (http://www.quietjourney.com/community/YaBB.cgi) for: General discussion Fishing Gear Cooking Trip reports - and even one (read-only for non-rangers) for ranger communications The moderators can move discussion threads around to match the categories. As a result, it is much easier to find information and past threads. Yahoo! does not provide that kind of flexibility and ease of use. The only way I can see to do it (with Yahoo!) is by having separate forums. Maybe it's time to suggest a move? After all, Yahoo! is not where we started (remember eGroups?). It is technically not difficult to move all the posts, databases, polls, etc. Some of the non-Yahoo! groups I'm in started that way. I know people are fond of this group, as am I - but think of it as moving to a nicer home (don't get me wrong, I've been in this 120 yo house 25 years now). Here's a few forum topics that could be used (yes, the Mom's group could be rolled in): General discussion Pruritis Fatigue Tests (LFTs, ERCPs, MRCPs, PTC, etc.) Listing issues Insurance issues Recurrence Post-transplant issues I'm open to suggestions to improve. As it is right now, only 300 members get direct e-mail, 250 get the digest, and about 600 read on the web. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Barb Henshaw -----Original Message----- ....If we spin off a transplant group, what’s next? A listing group just for those listed? A re–transplant group for those who have been transplanted more than once? The four stages groups? A group for those whose PSC has returned, but aren’t listed yet? Those with cirrhosis? LDLT group? The list is endless! I’m afraid we could end up a very divided group. Putting divisions aside for a second, IMHO the single most important thing about this group is knowledge. My son is listed, I want to know everything about transplants, good or bad so I can be ready. If you spin off, guess what? I’m going to join your group too unless you stop me – so will a lot of others. So what’s the point?... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 As an example of several forums within one group see: http://www.liverfamilies.net/forum/ It's a protected site, but I think anyone can get to the index part. Alternatively, one of the professional listservs I'm in (which gets about four times the daily traffic as this one) handles this through draconian rules on tags in subject lines. There's a set list (including a tag for CHAT) and each post has to be tagged appropriately. (A rough translation for our purposes might be PRE-TX; POST-TX; MEDS; QUESTION, etc.) That allows people to skim, ignore areas they don't care about or set up their mailbox rules to sort topics. But it also requires someone to agressively police said tags. Meanwhile, I want a list for multiracial families formed by adoption and headed by single mothers with an excessively cute child who has multiple cognitive and physical disabilities and a complex medical history before being dx with PSC, but then received a transplant and was re-dx and have overlap syndrome, and who live in Chicago (but not the suburbs. Any takers? Pam (mom to Quantell, 16, dx 1996, tx 2001, dx recurrance w/AIH overlap 2006) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Dear Barb, I want to be careful about how I respond to your post. First, I do want to agree with you on several points - yes, we are each others' best teachers, and I have learned tons from everyone in this group who is both pre and post transplant. Now, for where we disagree - there are some things about dealing with this disease that you'll never get because you are a caregiver and not a PSCer. You do have valuable insights, but you simply aren't there, thank God. I'm guessing we might not reach an agreement on this, but maybe you'll see that there's another perspective out there that is different from your own that would see this as a wonderful new beginning rather than a mean-hearted split. Once you receive an organ transplant, there is a survivor guilt that kicks in - no matter how you got your organ. If the organ was from someone who is deceased, then there's all the feelings about how someone died so you could live. If you receive the organ from a family member, there's all of the guilt that this person had to step up and save your life - even if all goes extremely well. These are normal reactions to such a complex, life-altering/saving change. In addition, you feel a separation from the PSCers who are still waiting. I can't describe it well, but I'll try. You feel like " what was so special about me that I got this chance and that so and so is still waiting - or that Shauna died? " It doesn't seem right to complain about how badly my post-tx outcome is given that others haven't even had chance to have that to complain about. I feel like I'm rubbing it in their face. Add to that the overwhelming guilt I feel about not getting " well, " and you can see that I've felt isolated from a good portion of this group for a while. Before my transplant, I'd read posts by people who were post-tx with interest. I would be afraid of the things that they were telling me, and I would sometimes honestly find them ungrateful for the chance that they'd gotten if they were complaining. Call me harsh, but when you're waiting to grab onto that brass ring, sometimes the " best " in you isn't always available every moment. I felt jealous. I admit it. Did I love these people? Yes. Did I hope and pray for them? Yes. Sometimes, however, their experiences were overwhelmingly scary. I didn't want to deal with their reality, yet. Many of the most active group members here are newly diagnosed. I would find the less pleasant issues of people who are post-tx too overwhelming and scary at that time. There is a careful dance that one does between acceptance and denial. Beforehand, I had to believe that when I woke up from transplant that I would be well - whether that ended up being true or not. I needed to believe that to have a chance at it working. On here, we talk about all things PSC, yes, but once you've been transplanted, you enter a new stage of life. The PSC transplant group could be a place for people who want to openly share their post-tx lives. That doesn't mean that they couldn't be a part of this group, too. I don't plan to leave. I'll still welcome new members and share the things that I've learned along the way - but as for exposing others to my less than stellar transplant experience, I'd like to save that for other people who are ready to say that they want to learn about post-tx living. If pre-tx people want to join to learn, and they think that they're ready for that, then that's fine. I just don't think that members of this group that is concerned with living with PSC should have to weed through my issues when they log on, though. They should get the information that they're seeking about PSC. More than anything, I was hoping to create a forum where we post- txers could be able to talk less sensored - where we could ask questions about liver transplantation and its aftermath. While I think there would be some funny and positive stories to share, I'm thinking of issues like: Does the fatigue really HAVE to be this bad? How often do you have an infection while taking immunosuppressent medications? When should I ask for an ammonia level with my new liver - I'm feeling like I'm not processing things as well? Could my poor memory be a side-effect of my medications when I have healthy levels for them all? Why do I wake up every morning feeling like I have early-mid PSC? What are you doing about prednisone-related bone loss if you can't stop taking it? What do you do about feeling depressed about needing ANOTHER liver? How do you handle that? What do you do when someone you know on the transplant floor dies - or you suspect that they've died? How do you face that? How do you talk positively to people who haven't had a transplant when your own experience hasn't been that positive? Even talking about the trauma of the transplant surgery and the aftermath itself would be theraputic to many of us; however, I wouldn't have wanted anyone to go on about having a breathing tube down their throat for five hours while breathing against it -fearing that they'd let you drown - if I were waiting for my transplant! I'm sorry, but I don't feel comfortable throwing these issues out to people who haven't had a transplant, who are just trying to make it to that magical day when they get a chance at this new life! For them, I'd rather talk about the happiness that I've felt in my life since transplant. Would I sugar-coat it? No, but I would like them to hear more of the positives than the negatives. If you'd like to join us, feel free, but I don't feel comfortable subjecting pre-tx PSCers to this kind of dialogue unless they're so inclined...It is just too much on the other side of that dividing line between pre and post-tx. By forming a new group, we wouldn't be creating a division that wasn't already there in our lives, we'd just be creating a space in which we could share that " otherness " with one another. Barb, I could go on, but I'll spare everyone. Please know that what we want is something that we need, that isn't meant to hurt anyone's feelings, that isn't meant to be divisive - instead it is to help us feel less alone. Deb in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 > > -----Original Message----- > What do you think of this idea? As an off shoot from this group, > somewhat like the mom's group? Barb makes some excellent points. We are a relatively small group and can learn much from each other. It does not make much sense to fragment. There is strength in numbers. The more I read about this horrible disease from the literature and from PSC veterans in this group, the disease can be more accurately described as: diagnosis ----> end-stage liver disease ----> Tx (if lucky) ----> re- diagnosis ----> end-stage liver disease ----> Tx (if lucky) etc until death where the length of time (---->) can vary substantially between individuals. I'm not just concerned with the diagnosis ----> end-stage liver disease part. I'd like to know about the post-transplant issues to prepare myself as a caregiver if and when the time comes. We are encouraging the researchers to form a single consortium to share data and to make more rapid progress in PSC, and hopefully to put an X in the middle of each arrow: diagnosis --X--> end-stage liver disease. We as patients and caregivers would also do well to stick together! I agree with Arne that having a different forum where different sub- groups or topics could be formed would be a good solution, provided that the archives of this group can be retained. Just my 2 cents. Best regards, Dave (father of (21), PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 All too often, people resist change. Certain change is, however, inevitable... or we'd be putting pen to paper, or sitting at typewriters, then licking stamps onto envelopes, & for a lil enjoyable ambient noise, changing a stack of vinyl records on the record player, woo hoo. Thank God for change! Thanks to change, our cars aren't cluttered with the muckymuck of 8-track cartridges. Alas, poor Betamax, I knew him well! I can remember popping in at the Video Library down the street, & feeling thoroughly disgusted because the VHS rental selections were vast, compared to the paltry Beta section. And did I mention our first computer was 64K? Who can remember the " pong " game? (Our family business actually made circuit boards for that game... and for " Intellivision " games, too.) Now that Jim & I are grandparents, & our eyes behold the splendid array of stuff available to our grandchildren that wasn't available when our children were tiny, it *almost* makes me want to have another baby... sh'yeah, right. I'll love on the grandboys 'til they exhaust my asthmatic lungs, then I will happily return them to their mommy & daddy, thankyouverymuch. But it does prompt to the forefront of my mind how 's first Pampers weren't nearly as absorbent as disposable diapers are nowadays... nor did those 28-year-old diaperdinosaurs have re-usable Velcro-y tabs at the waist, nor did they feature elastic at the leg. Every time pooped (and I'm convinced he had baby IBD, always so loose were his stools!), it meant a change of clothes. My laundry mountain was soooooo Mount-Whitney high. Criminy. My point? Change can be good. And even if you loathe it, it ain't necessarily the enemy. Back when Shauna died, 2 years ago, there was an immediate, perceptible, definite change of thrust in this group, IMHO: Research & Fundraising. So, Deb/ dear, & Arne too, & Joanne, and many others, I'd really like to THANK YOU for this particular thread of discussion! Arne & others, I can certainly see & appreciate where & how you're only trying to make good improvements & suggestions, and that you're coming from a positive place, NOT a negative one. I've lost count of the times when a transplanted PSCer has responded off-list to me (for instance, after I've inquired of them, also off-list, as to how they're doing), only to hear back that they're doing great, but feel hesitant or uncomfortable about sharing that positive news with the group, e.g., *if* the group is currently dealing with particularly tough, sad stuff. That's but one of many instances where a support group member (who could give out hope to the group, that is, if they would but keep this group posted) is lurking, reading, learning, but not sharing or participating with the masses... perhaps out of sensitivity, possibly not wanting to Lord their good fortune over others who are in pain & /or struggling, or any other noble reason, sure. Their sensitivity is not a " bad " thing. Perhaps for them, a post-tx PSC group would provide a venue for sharing both good & bad. Including the " bad " of how, for most (if not all?) transplantees, cancer will always, always, always try -- repeat, try -- to become the transplant recipient's trump card (a la The Grim Reaper, who was " thwarted " when the life-saving transplant changed his course -- from death by PSC -- to death by some other, future means!). That is, if you're careless, & not careful! Locally, our transplant center in La Jolla has a monthly support group meeting. Jim & I have attended so many since his PSC diagnosis in 1996, we've lost count. Their format for meetings is that everyone gathers in the hospital's (large!) auditorium as we listen to a guest speaker, followed by a brief Q & A. Past speakers have included hepatologists, transplant coordinators, parents of a (cadaveric!) donor, tx surgeons, organ donor awareness volunteers, etc. Our very, very first support group meeting, I was flummoxed that the guest speaker was a dermatologist (I remember thinking at the time, why a dermatologist? Why?!? Little did I know then the road Jim's post-transplant skin would take!) After the guest speaker, the audience breaks up into 2 categories: a) those listed & /or pre-transplant, & those who are actually transplanted. Then those 2 distinct groups break down further, into small groups (as available rooms at the hospital allow), for in-depth conversation & further networking & Q & A. These smaller meetings are moderated by medical professionals -- nurses, hepatologists & other doctors, tx coordinators, etc. At some point along the way, it had to have been decided by the support group organizers that this format was what was necessary for the support group recipients to receive maximum ( & much-needed) benefit. Divisive, but in a good way. Not fragmenting in a bad way. That being said, you sure can't please all of the people all of the time. If you could, there'd sure as shoot-howdy be no such current thread of discussion in this PSC Support Group, right? While you're at it, Arne, in addition to the subgroups you mentioned: General Discussion Symptoms (Pruritis, Fatigue, etcetera) Tests (LFTs, ERCPs, MRCPs, PTC, etcetera) Insurance Issues Listing Issues PSC Moms Group PSC Recidivism (Recurrency, post-tx) Post-Transplant Issues ....I can think of two more subgroups: Fundraising Research Each subgroup is worthy, however I wonder how good we'll be at correctly posting *this* to *this,* and *that* to *that*? (This is a genuine concern, I would think, no?) Jim joined this support group (albeit never openly participating) e-a-r-l-y ....before I did, yet he quit due to what he regarded as overwhelming e-mail volume (so thought he). Me? I'd never leave this group, never, not even if my computer became choked with postings, & I became a hopelessly chronic lurker. You good people were my lifeblood 5 years ago when our family experienced the immeasurably horrific stress in those dark days leading up to Jim & 's tx. I still want & need to remain in both the " PSC " learning curve, the " post-tx " learning curve, and the " colon issues " learning curve, as I continue to advocate for my husband. 18 months out from the transplant, when Jim started jiffy-popping malignant melanomas (very much in part due to the amount of his immunosuppression, specifically, Prograf), I had no choice but to join a different internet support group for liver transplantees, because I simply wasn't getting " everything " I needed right here, in this PSC group, to meet all of Jim's post-tx needs & concerns. In fact, Shauna Saunders gave me a friendly " well, hellooooo!!!! Fancy meetin' you here! " greeting when I introduced myself over there. Dear Shauna aside, though, that liver transplant group isn't near the " family " that this group has become (to me), & just as hepatitis takes a bigger piece of the liver pie than does an orphan disease like PSC or PBC, THAT group seems comprised way more of HEPpers than PSCers. Nevertheless, they did embolden me to fight for tweaking down Jim's immunosuppression, insisting that I, & Jim's dermatologist(s) & melanoma research oncologist specialist, were right. This has been QUITE the fight with the transplant surgeon-gods, who don't want to mess with Jim's usually stellar labs (and don't want to mess with me!). If a vital, active, post-tx subgroup had been available to me in this group back then, that would have been so dearly appreciated! Deb, the " you're a caregiver, not a PSCer " point you made to Barb surely is a good, valid one. Goodness, there have been the occasional times when I've felt a bit 2nd-class here! (But then I only need remind myself that this support group was not defined primarily for PSCers & secondarily for their caregivers and loved ones; it's a support group for whoever is here, plain and simple.) And Deb, back in July, you were one of a few who gave me valuable responses in the midst of that yet-another crisis, as Jim's tx center decided Jim's spiked Alk Phos was all they needed to demand an invasive (not to mention costly) liver biopsy, so self-convinced were they that Jim's PSC was on the return. Thank God you & the others read my post & cared enough to respond. Just as you pointed out in your post, that helped me feel not so alone. With all my love to this great group, Maureen (wife of Jim, UC, PSC, PRLTx, post-tx issues that would benefit from a post-tx PSC group) PS -- being that Tim R is also a member of that Liver Transplant Support Group I mentioned, I'd obviously GREATLY value his opinion/comments regarding this particular thread of discussion. Tim... you there? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Maybe it's time to suggest a move? After all, Yahoo! is not where we started (remember eGroups?). It is technically not difficult to move all the posts, databases, polls, etc. I love the idea of moving to a better host site. But….what about all of our brochures? They all say Yahoo, so does all the rest of our PSC Partners printed materials. 300 members get direct e-mail, 250 get the digest, and about 600 read on the web. The 300 who get direct e-mail already approve of all topics discussed – so much so, that they prefer to have posts come directly to their home or work. The 600 who read on the web, already have the ability to skip any problem e-mails that might distress them. The 250 who read the digest, I don’t know about, they usually are very busy people who just skim the mail, the only thing I’ve heard them complain about is not deleting old posts and we haven’t had a problem with that for a long time. Is someone actually complaining about topics being too scary, or are we just being too hypersensitive here? Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 From: [mailto: ] On Behalf Of Barb Henshaw I love the idea of moving to a better host site. But….what about all of our brochures? They all say Yahoo, so does all the rest of our PSC Partners printed materials. It's simple to provide a re-direct. That's how I found my favorite canoeing group - they started on Yahoo!, but don't maintain anything on it other than a pointer to the new one. Is someone actually complaining about topics being too scary, or are we just being too hypersensitive here? Not that I'm aware of - it's just hard to find things. Yahoo!'s recent search change is an improvement, but it can provide some unintended results Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 -----Original Message----- where we disagree - there are some things about dealing with this disease that you'll never get because you are a caregiver and not a PSCer. Could be true, might even be true, but a man doesn’t have to have a baby to know it hurts and a woman doesn’t have to have prostrate cancer to know it’s hell. Being a mom or dad of a kid with PSC, or being a caretaker for the love of your life is different too, but I would never ever say you can’t identify with us. We one and all hate this disease, that’s our common bond. I get that much. but maybe you'll see that there's another perspective out there that is different from your own that would see this as a wonderful new beginning rather than a mean-hearted split. I don’t (never did) think it’s mean spirited, but I do think it’s wrong to spilt us up. I don’t mind change, if it’s for the better, but change for change’s sake isn’t always good. I just don't think that members of this group that is concerned with living with PSC should have to weed through my issues when they log on. Has anyone actually complained? I wouldn't have wanted anyone to go on about having a breathing tube down their throat for five hours while breathing against it -fearing that they'd let you drown - if I were waiting for my transplant! But I would! I want to know! I want to know!!! How can I help my son through this if I don’t have a clue? I want to be able to tell him, (when he’s got a tube down his throat and can’t talk) I know you feel like your drowning and you’re afraid, but you aren’t drowning and I’m here. By forming a new group, we wouldn't be creating a division that wasn't already there in our lives I’m really sorry to hear that. I don’t know where I would be without Dr Aubrey, Tim R, Steve and others in my life (and Ken’s). I understand you’re going through hell and need to talk about it. I’m really sorry about that, I wish I could do more, but we’re here to help you as best we can. Just because we haven’t had a transplant, doesn’t mean we are unable to help you and others. Life isn’t perfect, we’re not perfect, nothing is, but we are perfect - together. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 We can argue endlessly over whether we should start a new group to serve special interests in this group or not, but in the end it's sort of pointless. The fact is that *anyone* who wants to can start a Yahoo group, and if there is a real desire for some of these sub groups, they will almost certainly be formed eventually. If we don't want the group to fragment when these smaller interest groups are formed, then we probably would need to form them ourselves as " sister " groups to this one, or to move the group to another site where different areas of interest could be accommodated within the context of the main group. Whether this is the ideal time to do that I don't know, but we will probably have to decide one way or another eventually or the decision will be made for us. Just a few other general thoughts on this subject: 1. Archives etc. could be retained pretty easily if we moved the group. I have a copy of the archives on my home computer, and these could be posted in the files section of another site. Additionally, this group could remain and the archives could still be searched just as they are now. 2. This group itself was an offshoot of a much larger group for all forms of autoimmune liver disease. That group was so large, and PSC was so small are part of the subject matter that it really was a major chore to sort through the messages in search of the ones that related to PSC. I know that I had mostly stopped reading that group when this one was formed, and it was wonderful to have a forum where a much larger percent of the discussion related to my situation. Relevance is a wonderful thing. 3. Whatever we do (if we do anything at all) we won't jump into it. Feel free to express your opinions, but try not get too worked up about it! We can talk about this in a adult manner :-) athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 ---Original Message----- if those who are post-tx are having difficulty writing candidly about their experiences or asking questions, then this group isn't meeting all of their needs. I think we need to try to understand, and respect their feelings I think everyone respects their feelings, no one has been disrespectful. Last week a separate group for news & studies was proposed. This week another group, I just think we need to try and stay together. Maybe by changing host sites, we can meet their needs and stay together at the same time. It’s an idea that’s worth looking at. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 >We are encouraging the researchers to form a single consortium to data >and to make more rapid progress in PSC, and hopefully to put an in the >middle of each arrow: diagnosis --X--> end-stage liver We as patients >and caregivers would also do well to stick together! One other " crazy sort-of thought " from me... for what it's worth... as I read through the posts today I thought of patient's and family members sitting for several hours at a time in an out-patient IV therapy/chemotherapy clinic. Twelve or fifteen people receiving heaven knows what " stuff " in various bottles and bags. Newly diagnosed cancer patients, " cured " cancer patients with newly diagnosed recurrent or metastatic disease, amidst a couple of " lucky " souls who just might need a blood transfusion. These people talk and bond and learn - the good, the bad, the horrid and unfair stuff. Yet, they all are traveling down this crazy road of life, and the road is not smooth (yes, I'm from California and the roads are really bad). This group is a broad mix, but again, somehow to maintain all of our efforts to fight this disease - because we sure don't have the same numbers and financial support of those with non-orphan diseases. Thanks for listening. And Joanne... I hope things are better for Todd today. Dealing with the additional diabetes must be still hard too. I hope you'll let us know how it's going for him. Joanne (, Ca) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 > > > > But I would! I want to know! I want to know!!! How can I help my son > through this if I don't have a clue? I want to be able to tell him, > (when he's got a tube down his throat and can't talk) I know you feel > like your drowning and you're afraid, but you aren't drowning and I'm > here. AMEN and AMEN!!!!!!!! When I had my gallbladder surgery, not one single damned person ever said a word about a tube down my throat and that I would wake up with that. I woke up terrified, my brain screaming because something was blocking my throat. That's a hell I would like to have known about and nobody ... not one doctor .... not one nurse ..... not one single soul bothered to tell me, even though I asked over and over and over again " What should I expect?? " Afterwards they all said that they didn't want to worry me!! Well, gee whiz and excuse me for not being a moron, but spending those hours in sheer terror were only about a few trillion gazillion times more upsetting than if I had known ahead of time to expect a @#$%^%^%$#$#@ tube down my throat!!! That's only one tiny part of the reason I refuse to consider transplant surgery. Now ... lest anyone now get all bothered and worried, please know that there are many, much greater factors which put me at too high a risk for transplant (like not being able to tolerate anesthesia). It's fine. My husband and I are at total peace with our decision. My point is that, like Barb, I WANT TO KNOW WHAT " S AHEAD ...... I joined this group for information and support. If I were on the transplant track, I would want to know exactly what to expect. ALL of what to expect. Does anybody really think it's easier to go in blindfolded and ignorant and then freak out over what happens next???? I'd prefer the chance to face it and deal with it ahead of time and not spend literally hours in a state of terror. My idea of support is not to be wrapped in a warm fuzzy emotional blanket with blinders and earplugs lest I become a wee bit anxious. If my angry words have offended anyone, then I'm sorry. Emotional swings are part of hepatic encephalopathy which is one of the finer perks of having this stinkin disease. Consider yourself educated. [Note: this paragraph is all sarcasm, in case anyone wonders.] Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 For what it is worth, I agree with Barb. There are other host sites that are more convenient and better equiped for our kind of group. I read almost all mails I receive, just because I want to understand what can be waiting for me down the line, and because I want to learn more. Most of it does not affect me directly since at the moment I am mostly a-symptomatic. Sometimes I read stuff that shocks me, sometimes it makes me sad, sometimes it makes me happy. One of my collegues even found me crying after reading a post written by Amy. Still I wouldn't want to miss any of it, and I think we should try to stay together on one site, maybe with a different host. Chaim Boermeester, Israel I think everyone respects their feelings, no one has been disrespectful. Last week a separate group for news & studies was proposed. This week another group, I just think we need to try and stay together. Maybe by changing host sites, we can meet their needs and stay together at the same time. It’s an idea that’s worth looking at. Barb in Texas .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2006 Report Share Posted December 14, 2006 Dear all, I am finally adding my 2 cents to the discussion. I favor making information available. I like this group, its discussions, and its focus on finding something that will halt or slow PSC. I would like to see it stay together so that we all can benefit from each others experiences. But while our collective experience with PSC, UC and Crohn's is very broad, when we get down to transplant and post-transplant issues we can be very limited, and other forums will serve our needs better. I'm a member/moderator at yahoo's liver_transplant group, which I joined about the same time I joined this group. It too is a support group with a mix of pre and post transplant folk and their parents, caregivers and friends who celebrate, warn, challenge, encourage and cherish each other as we live with or strive towards a transplant. It too has its limitations. Post-tx UC flares are not a topic that has occurred there, although here it would not be unexpected. Having a Livertx-PSC group may develop in ways similar to the PSC-moms group with much less overall activity, but focused on areas that are distinctly transplant issues, with perhaps a synopsis posted to the main group when applicable. I don't see it bleeding off members, I expect most who join Livertx-PSC will still be a part of this group. One concern is that if we split off the tx discussions information won't be shared and the knowledge that members could have gained from others experience won't be passed on to new members of the group. I believe that happens even now. How many of those who are awaiting transplant have read through the 7 transplant stories that are in our links section (http://health.groups.yahoo.com/group//links/Transplant_Stories_00106\ 7522118/) ? They cover a range of transplant an retransplants – both very successful ones and some that make you wonder how the patient survived. Before my transplant I knew of Dr Bingo's story. I managed to avoid the confusion and hallucinations he suffered, but was unprepared for huge blisters on my heels and a hand so numb from a pinched nerve that I couldn't hold a pencil when I first woke up with a respirator tube down my throat. Ten days later the huge amount of post surgery edema came as a big surprise. Each transplant will have its own surprises. Not everything can be anticipated. Just a driving a road at night you must be prepared for the unexpected to show up in your headlights, now mater how familiar the road, when you take the transplant journey you will have a unique one, no matter how well lit others have tried to make it. Probably more than 2 cents worth, but that's what I have to say, Have a healthy and happy holidays everyone. Tim R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 > > Dear all, > I am finally adding my 2 cents to the discussion. I favor making > information available. I like this group, its discussions, and its > focus on finding something that will halt or slow PSC. I would like to > see it stay together so that we all can benefit from each others > experiences. But while our collective experience with PSC, UC and > Crohn's is very broad, when we get down to transplant and > post-transplant issues we can be very limited, and other forums will > serve our needs better. > > Dear Tim, Thanks for being so understanding. But this doesn't surprise me as I am learning that perspective is everything. It was never my intention to leave the group or not support it. But a separate forum of post TXers would be helpful for us folks on the other side of tx. What saddens me most about all this controversy is the lack of compassion and understanding. I guess I expected more support for this idea as I felt and still feel that it will benefit all parties. How are you feeling? Patiently waiting on the list? I think about you alot as I know you can't be feeling great. Right before tx I have never felt so bad and I realized that it could have been so much worse. It's was amazing to me how what looks like a slow decline can all of the sudden become an avalanche. Thanks again, Meryy merry Christmas. Ali Quote Link to comment Share on other sites More sharing options...
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