Internet support groups for adult liver transplant patients and their families

With 113,000 plus posts, the Liver Families forum is a thriving internet support group for people who have children with liver disease and transplant. And most blessedly, it's a support group for those children as they grow up*. That part I love. The teens and adults who've made it through all the childhood stress of liver disease and transplant are the proof that it can be done!

However, for grown-ups who didn't have liver disease as a child, whose liver disease can be categorized as "adult-onset," internet support seems to be hard to find. This is surprising, as there are over 16,000 adults in the U.S. alone waiting for liver transplants. In contrast, the number of children waiting for liver transplants in the U.S. is far less, just under 700 (per the Organ Procurement and Transplantation Network).

Liver Families receives multiple requests each month for membership by families dealing with adult-onset liver disease and transplant. It's very distressing to turn these families away, but the Liver Families mission is very specific:

to provide an active, international, online community to families whose lives have been touched by pediatric liver disease and transplant.

Often times the advice given and support needed is very different for an adult than it is for a child, so I went on a search for online support for adult-onset liver disease. I found some solid educational resources, some good lists of local face-to-face support groups, and one internet forum that I especially liked: www.transplantbuddies.org. That forum seems to be active and very relevant to adult-onset transplant patients.

There is also an online support group at Yahoo that looked active, but it's closed to non-members so I couldn't peek at the content.

Here are the other resources I found:

• Transplant Living
• The American Liver Foundation. Each chapter has a list of support groups in their area. For example: http://www.liverfoundation.org/chapt...cnw/resources/.
• British Liver Trust

If you know of additional online resources for adults facing liver transplants, and for their families, please let me know! Many thanks.
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* Members must be 13 or older.

New Katie Story

Cick here for a new Katie story. :) Apologies for cross-postings.

pediatric liver transplant in the news!

My friend Mika made it into the news!

Aunt Amanda's new breast cancer blog

Katie is doing great, here are two pics that we took of her "in disguise" two weeks before I was diagnosed with invasive scary breast cancer. We were up in the forest outside of Corbett, at her Chinese medicine doctors. It was serene, and we were having a beautiful day playing with my new digital camera.

Katie was being 8, skipping around, constantly in motion as she is, and at one point she skipped near me and said something to the effect of, "I'm so sorry about the breast cancer." Or maybe there was no "the," or maybe it was "Breast cancer is a terrible thing," or some such.

But it was enough to catch my attention, and I said, "Sweetheart, are you thinking about Rhona?" (Rhona is her godmother who had breast cancer last year.) "Honey, Rhona's ok. You've seen her, she's up and walking about. And I don't have breast cancer, so there's no need to worry."

And Katie looked at me with all the compassionateness of an 8 year old who is also 80 and 2 at the same time, and then she skipped away. And it was one of those conversations where part of my consciousness went, "Hey, wait a minute, what was THAT about??" And then our day flowed on in the joyous activity that is Katie and Jackson being fully in the world, playing and skipping about and I didn't give it another thought.

Prescient? Maybe. Likely. In any case, Katie was right. I was wrong. So rather than blog about it here, because this blog is really about looking for bright futures in the land of biliary atresia, I've started a new blog, Imagine Bright Futures II, because the theme still applies only this time the adventure is mine. Please join me there.

Social Networking At Its Best

Sorry to be SO behind in posting. Lots of good news to share.

Not only did Liver Families celebrate its first birthday recently, with 600 members and nearly 60,000 posts, but we just celebrated our first, ahem, "love connection." Yes, a couple in their 20s met online at Liver Families.

My mom was here this morning and so I shared the story with her, and she said, "But I thought it was mostly parents talking about their kids?" And then she got it, "But in the best of all possible worlds those kids grow up and become adults. And they need someone to talk to too!" I could see the hope-light fill her eyes. (Her grand-daughter, my niece, has biliary atresia and there've been some times when we've been very scared.)

So I showed her the profiles and photos of different adult members with biliary atresia - here, "He's 26 with no transplant"; and another, "Here, she's in her twenties with no transplant plus she has a 5-year old daughter!" etc. All stories of hope, and my mom visibly relaxing into the stories the whole time I'm showing her their pictures. Great, great stuff.

My favorite pics however are those of Billy Rubin the Traveling Teddy Bear! He just finished his European tour in Germany, and is headed back to the states, to New Jersey. Those pics are the best, to see little kids hugging that Liver Families Teddy Bear tight, so that they viscerally know that they are not alone, that there are other kids like them. It gets me every time.

And the good news continues - there's been a a recent surge in membership from the UK. All in all, there are members from 24 countries and 44 states.

Gotta love that online support! This is social networking at its best, turning the big ol' stressful topic of pediatric liver disease into solid friendships, great information sharing and even a little bit of romance. Oh my.

Thinking of joining an online support group?

If you just received some bad medical news, you may be worried, wondering what the future will hold. Perhaps you or a loved one have been diagnosed with a rare, or even a common, disease. Or just a health challenge. And you want to find out more.

If you're a researcher, maybe you've already gone to WebMD, emedicine, the Mayo Clinic, pubmed or other info. sites. Was the information easy to understand? Or is it scary and hard? Is it keeping you up? In this day and age, there must be someone who lives with the issues day in and day out to talk to, online, right? Not in an appointment for 15 minutes in two weeks, but now. Right this minute.

Even at 2:00 in the morning, a group of "someones" likely exists, in the form of an online forum or support group. As someone who helped start an online forum for families dealing with pediatric liver diseases, I've thought long and hard about what makes an online forum work, and so wanted to share my criteria. You may have different criteria, but at least it's a start.

Is the forum active?
First off - how many posts are in the forum? And how recent are they? Is the forum actually used? If so, it might be worth looking into. If the posts are pretty old, and there aren't very many, move on. What you're looking for is information, and people to talk to now. If there's no one online, there might be another option. (Liver Families uses the vbulletin forum software, and for most vbulletin forums the # of posts and # of users shows up in the bottom left hand corner. As of today, there have been 49,927 posts. )

Does it have the information you need?
If the forum has a lot of posts, that's a good sign. It means that clearly some people find this forum valuable. Ok, so far so good. On to the next step. Can you read some of the posts? Do they contain the kind of info. you're looking for? Is the forum searchable?

Note: If you have to register as a member before being able to search, this may be a good thing. Sometimes people pour their guts out online, and IMHO those stories need to be somewhat protected. If those stories are open to you as an unregistered user, be a little wary.

Is it related to another site?
For many online groups, there's a parent organization or website attached. Take a moment to pop on over. Do you like what you see? Are there spelling errors? Does it seem professional? Has it been updated recently? If you do a quick fact check of leadership (for example, of an advisory committee) are their addresses current? Do the leaders have personal blogs or webpages, and do they cite their affiliation with the group in question?

Do you like what you see so far?
Does the design appeal to you? Is it easy to figure out the layout? Is it inviting? Is it well done? If so, that's great. You may be close to finding the support group you're looking for.

If registration is free, which it usually is, it takes a few minutes to register. So go ahead. Then you can get into the forum and really look around.

Who are the members?
Is there a membership list? If so, head over there for a bit. Are there people there who are in your shoes? Maybe dealing with the same disease, or even from the same part of the world as you are? In the Liver Families forum, there's a search function. So, since I'm in Oregon, if I search for Oregon, I find 10 other families. Five of whom deal with the same rare disease that my niece has. That's very cool.

Do you like the culture?
I've been to some forum so-called support groups where the culture was whiny, or very religious, or somehow something that wasn't a fit for me. For instance, for fibromyalgia I haven't actually found an informational group that I really like, much less a support group. Culturally, the closest fit for me is www.chronicbabe.com, mostly because I like her attitude - "I may have a chronic illness, but I'm still a total babe!" Gotta love that spunk.

So far, so good? Check out the admin team
Ok, so you like what you see so far. So who keeps this forum running? How is it administrated? Who are these people anyways? Is it one person, or is it a team?

If it's one person, then what happens if that person gets sick or has a crisis? Personally, I tend to trust teams much more. In any case, do the administrators have blogs or websites? And if so, when you go there do you like what you read? Is it helpful, do they seem trustworthy?

Who pays for it all? How is the site supported?
Is there a list of sponsors, and if so, who are they? If there's foundation funding, that's a great endorsement.

All in all, it's important to find support that you're comfortable with, and information that seems credible. As with all medical information online, check with your doctor first before acting on any of it. Caveat emptor...but hopefully you'll find the information you're looking for and even maybe make a few friends in the process! If you have tips or advice, leave a comment here.

My new present :)

The Holiday Season has begun! I just got the best present ever - a banner for my blog.

Many thanks to Mikaworks for the new design!

And P.S., shall my dear family members ever stop by - a coffee mug with my very own blog banner would be the cat's meow.

A brief history of online support groups for biliary atresia

For those families with children with the liver disease biliary atresia, this article provides a brief overview of the history of the various biliary atresia support groups. As someone who actively contributes to an online support group for pediatric liver disease called Liver Families, I wanted to share what little I know about the history.

To start, a google search for "biliary atresia support" shows four groups in the top ten results (in order of the most active):

• Liver Families - 46,740 posts
• Children's Liver Association for Support Services (CLASS) - 111 posts
  
• Biliary Atresia Liver Transplant Network (BALT) (no online forum; defunct)
  
• and the American Liver Foundation (no online forum)
  

Additionally, I know of least five other active groups (again, in order of use):

• a yahoo group called the Biliary Atresia Network (BAN) - 4121 posts
  
• a yahoo group called Sappitieatresia, which means biliary atresia in Finnish - 476 posts
• the Children's Liver Disease Foundation (CLDF) e-talk -175 posts
• a Russian support group - 127 posts
• the European Biliary Atresia Registry forum -50 posts, not including spam
  

So, how did these groups come about? Are they related?

The American Liver Foundation, started in 1976, is by far the oldest, and was formed by a committee of the American Association for the Study of Liver Diseases (AASLD). Today, though various chapters have support groups that meet, there is no online group.

The BALT newsletters date from 1994 to 1995, and then BALT resurfaces online in 1998 as the Children's Liver Alliance, with copyrights dating from 1995 - 1998. Their yahoo group was active from 1999 to 2001. In Dec 2003 their livertx.org site was taken down, and as far as I can tell the group is defunct. (I don't know why it continues to show up on google.)

CLASS was founded in 1995, and their nonprofit tax reports (on Guidestar) start in 1999. Some of the names from the BALT newsletters show up on the CLASS board and volunteers lists. The CLASS website first shows up in the wayback machine in 1999, and their online discussion forum was announced in March of 2000. I discovered the forum in 2002 and was a member until it shut down in 2005.

The European Biliary Atresia Registry (EBAR) started as a result of a symposium which took place in Hanover in 1999. It's not clear when the EBAR forum started as the posts are wiped clear every 12 months.

The BAN yahoo group started in 2001, showing a peak activity of 192 posts in Sept. 2006 and dwindling to 17 in Oct. 2006. A little further research shows that the founder of BAN took on the role of CLASS forum administrator in 2004: the same person runs both forums.

The Finnish group was started by a member of BAN in 2005 to connect families in Finland. The Russian support group started that year as well, with no known association to any other group as far as I can tell.

The rest of the history I know from personal experience: In late summer of 2005, following Hurricane Katrina, the CLASS forum shut down. Unexpectedly. Given little hope of its return, 60 or so "refugees" from that forum, including myself, regrouped. The force of that reconnection was so strong that it became the impetus for a new forum -- Liver Families -- in Feb. of 2006.

The CLASS forum, run by the BAN founder, eventually resurfaced, only to shut down again (again, unexpectedly) in fall 2006 for a month. It recently reopened.

The newest group is that of the Children's Liver Disease Foundation in the U.K, established in August 2006. A Liver Families Admin. team member from the UK consulted with CLDF and is an active participant.

Liver Families is the only group with an expressly international focus, and my guess is that more country-specific groups such as those in Finland, Russia and the UK will form as internet use continues to increase.

This isn't really enough information to provide an in-depth analysis, but it does provide a brief overview. In-depth analysis would require interviews with the key founders and active members, as well as access to the historical documents surrounding the rise and demise of the various groups.

And the questions are begging to be asked - what makes an online forum successful? How do you measure forum health? What does a forum do once it's key members leave? Why do members leave? What makes them stay? How much of a difference does online support really make in their lives? At what point is there a critical mass of information and members with a knowledge base that makes a forum really useful? Does the training of the admin team in conflict resolution or group dynamics make a difference?

If web 2.0 is about conversations, and web 3.o is about relationships, what does this mean for online forums? What role does blogging play in forum support? It's a research paper waiting to be written - any doctoral (or grad) students in history out there?

Memorial donation to the Biliary Atresia Fund for the Cure

Jackson Riley McLear died early this morning due to post-transplant complications following biliary atresia. It's fitting that it's Veterans Day. New Liver Families member Clare said it best: "The 11th day of the 11th month is the day we all remember fallen soldiers. Jackson fought his own battle and what a brave little soldier he was."

His parents have asked that donations be made to the American Liver Foundation (ALF) in Jackson's name. ALF has different dedicated research funds, and thanks to Ellis Green (who also lost a child to biliary atresia), the American Liver Foundation has a Biliary Atresia Fund for the Cure, so my donation in memory of Jackson will be dedicated to that fund.

Peace be with you all.

Critical mass

After spending my morning off, well, sobbing, over the babies mentioned in these posts, I'm trying to get a little bit of perspective on the increased number of death stories on the Liver Families forum in the past few months.

I guess it hadn't occured to me that as the Liver Families group grew there would also be more deaths. (We're up to 437 members, and 44,000 posts.) It's obvious now, but my hope had been that as the "wisdom of crowds" smart-mobby thing kicked in that we'd all be able to muddle our way through together. That we'd have better chances together than apart. That there would be fewer death stories when we were together, not more.

Was I just being naive? More people = more births, and more deaths.

I know that the characteristics of "wise" crowds (see the book called the "Wisdom of Crowds") are diverse opinions, loose ties, etc. and my intent with inviting families together was to set the stage for a diverse set of people who are loosely tied together to meet the conditions of "wise" crowds. That with our pooled experience, our "collective intelligence" we'd be able to make our lives better, and maybe even save some lives. (And we have, but it's not enough.)

Maybe we're not there yet, maybe the group isn't diverse enough. Maybe the enemy that is pediatric liver disease is just one fierce, multi-faceted enemy and it will always be an uphill battle and many battles will be lost. But the children lost? That price is such a harsh, harsh price to pay. Maybe I'm just now realizing that it's a war, when I thought it was just a family fighting for their child's life here and there. That it just happened sometimes, when things went unavoidably wrong.

Or maybe it's the first time that such a large group has been assembled (which is not saying much, as we've found perhaps 2% of the families dealing with pediatric liver disease), and that the frequency of death stories was something we just weren't exposed to previously. When we're apart, how do we know what the death stories are? The answer is that we don't. We get to naively go through thinking that the deaths are few and far between.

Also, most of the deaths recently seem to be in the US. This is just an anecdotal impression, but the UK families seem to be faring much better. I know that the UK kasai rate is much better than the overall US rate. I also know that the jaundice screening protocol is much better in the UK than the US. So those two things alone mean more kids survive, or at least more kids with biliary atresia survive.

But are the UK pediatric transplant survival rates also more successful than the comparable overall rate in the US? I bet they are. And there's also the issue of organ donation rates. What a complex story this all is.

As Liver Families reaches a critical mass of stories, as more and more "liver" families gather from all over the world, it's beginning to dawn on me that it's not just a battle here and there; rather, pediatric liver disease is one terrifying enemy and this is a war - albeit a quiet one, but a war all the same.

The "bright future" in that? Naming the reality of what is happening is half the battle. Calling this a war? It means that our strategies have to shift, that we need to start naming the bigger picture. Setting goals. The UK did it. The US can do it to. Things have GOT to change.

My plan: off to find what numbers I can and start crunching the data.

.... to be continued

Doing the Wiki Hula :)

I haven't been blogging lately because...I've been working on the wiki. Wiki is from a Hawaiian word meaning quick, so as I get the hang of the wiki software with all its new steps, it's sort of like learning a new dance. A technology dance! Going with the Hawaiian theme, I've been thinking of it as learning the wiki hula :).

The initial wiki team started out with comments that were a teensy bit on the intimidated side, but soon enough they turn to this:

"Aaagh - addicted to Wiki :)...There just aren't enough hours in the day!"

"I'm wiki-obsessesed and it's all your fault!"

Gotta love that! Life is good. Next step - expanding the team by inviting more of those incredibly knowledgeable Liver Families members. Can't wait to see what they'll do!

Pediatric Liver Disease Wiki

It's not ready to be unveiled yet, but I'm brimming over with so much excitement that I can't contain myself. At Liver Families, we're working on the world's first Pediatric Liver Disease wiki! "Our very own community encyclopedia on pediatric liver disease and transplant." With nearly 39,000 posts and over 400 members from 21 countries, the collective knowledge of the members is reaching a lovely critical mass.

Even within the forum posts themselves there's a wealth of questions, information and first-hand experience on subjects such as NG tubes, cholangitis, denovo Autoimmune Hepatitis, food allergies post-transplant, etc. Now we'll have a chance to tag those posts and link to them in a systematic way, and link to our favorite information sites as well, such as labtestsonline.

Imagine all the biliary atresia article abstracts that EBAR has, but now imagine them hyperlinked. How useful that could be!! I know, I am such a nerd about this stuff, but this is a whole new era in access to information about pediatric liver disease. And our kids with liver disease will be better off for it.

It's a Magical World

I just happened to see Johanna Billing's "Magical World" as part of PICA's 2006 TBA festival. It is an unexpected gem of a film, a high-quality 6-minute loop that I could watch it over and over again.

I knew nothing about the film when I saw it, I just wandered into a room and there was this little film. At a glance, it's footage of children singing and playing instruments. The first time through, when I hear it, the song doesn't sort itself into words. It is just sounds, lovely sounds, children waiting for their turn to sing their part. Set in a classroom, interspersed with glimpses of stark buildings, the setting is clearly a neglected part of Europe: modernist architecture, gray cement - little green, little life. It seems incrongruous with these children, who are tangibly so glad and proud to be singing.

Then we see the sheet music over the shoulder of a boy: "Magical World." And the sounds become words ("it's a magical world,") but only the way they would if you were a native-French speaker hearing American children singing "sonnez les matines, ding dang dong" (from Frere Jacques), where the children know the sounds of the song but not the meaning of each word, nor where the word breaks are. The impression is that the children have been told the meaning of the song, but that the words themselves are just sounds in the mouth.

Then I began wondering, well, ok, if that's the message, how is their world a magical world? Clearly the city they live in is very stark. Where is the magic? And then it hits me, in a way that is like being hit in the gut, with a swallowed sob and tears - the magic is in them. In their childlike joy, in them as their country's future.

They're singing the song because some adult with darker knowledge of what life has been like wants to change the future for these children, wants to call that magic forward, to cement it in their lives by calling it out. And that act makes it a magical world indeed. It's smoke and mirrors version of hope, that by singing it as if it's true it will become more true, that their world will become magical beyond these children, beyond their song.

Mika Hannula, in her review of the film, discusses how the "sentimental season" has been taken away from us by advertising. She writes, "Billings offers us an alternative. She shows us how it is not only possible but preferable to deal with these major concepts and feelings that seem to be so cute and phoney but [are] nevertheless important. We need them back. We need these sensations and words for our use right here, right now. We need to have an alternative way of defining what is hope, seen both individually and collectively."

I haven't been in Europe for 19 years, and I'm not familiar with recent events. But it's clear that the setting is grim. That something has happened there that was traumatic, that the adults are still recovering. So when I learn that the setting is Croatia, I'm not so surprised.

PICA's desciption of the film reads,

...Never-ending footage of children rehearsing the 1968 Rotary Connection song Magical World, written by Sidney Barnes, acts as an anthem for an uncertain future and presents a glimpse of a country in transition. The children deliver a haunting and hopeful rendition with reservation and pride.

In forced and newly learned English, a young Croatian boy sings the enigmatic and defiant first lines: 'Why do you want to wake me from such a beautiful dream? Can’t you see that I am sleeping? We live in a Magical World...' Billing portrays a micro-moment, which mirrors a community still recovering from the break-up of the former Yugoslavia.

The film is part of a series by Swedish artist Johanna Billings, a series called "More Films About Songs, Cities and Circles," narratives about changing societies, place and "the feelings that people suppress and lose touch with....the things that we are unable to speak about without ending up in commonplace and cliches." To break past this, "the protagonists of Billing's films remain silent - unless they sing." (Marabou Park, 2006).

hearts and minds

"Great Grandma Agnes dreamed
that she held the baby all night long
Not knowing that Katie was in intensive care...
Oh, how we live in each other's hearts and minds!"
- a poem by my father, when Katie was an infant

Below is what I wrote but didn't post last night. And then today (the 13th actually, the date stamp is from yesterday) comes Moreena's post - she was thinking about some of the same things. The line from my dad's poem comes to mind: "Oh, how we live in each other's hearts and minds." The stories of these kids stay with us all day long, they get into our core, they get under the skin. And I love that I'm not alone in the stories taking hold.

I so appreciate the way that they put everything else in life in perspective - life's little stresses just pale in comparison to these stories.

****

Originally titled, Oh her sweet, sweet smile....

Finally some good news: Jada Rose's before and after transplant pics. Look at that sweet, shining face. Wow.

It's been a desolate stretch, with Rani's death in Australia after 5 long months on the transplant waiting list, the death of baby Yang Heng De in China (I'm just not ready to tell that story yet), Natalie's relisting, and the death of Laura's new graft. She's listed top priority now, please pray for her...

And then comes Jada Rose's sweet, sweet smile. That's Jada Rose of Ute fame. Oh, thank you universe...

It's hard to be a witness to the hard stories, the ones that, as a mom on Liver Families said today, "[shake] us to the bone." Some days, I just want not to read all the stories. The hard ones are really, really hard. But the happy ones? It's like strong sunlight, golden light that can't be shaken, blissful images of sweet before and after smiles that carry me through the rough patches...