Welcome Dialysis_Support members

[DoriSchatell]

Hi y'all,

If you've come here, it means that you have heard the sad news about our Dialysis_Support listserv founder, our fearless leader, and one of my personal heroes, Dale Ester, who passed away yesterday morning.

This is a temporary spot for Dialysis_support members to meet and share, while we figure out next steps. We don't have the password to the old yahoogroups listserv, and may not be able to get it. So, if y'all are up for it, we can start over. Let's talk about what Dale meant to us, what he'd want us to do, what sort of tribute we might do for him, and how we want to move forward with the listserv itself.

I know how much Dale cared about all of you.

[John Mudie]

I am feeling sad and crying as I write this and wondering two things.
1/ What can I do to support the contination of ESRD which benefitted me so much in the past?
2/ What to ask my executors to do with my stash of immuno's when I won't need them anymore?

John

[BobsKCinFl]

Now, we must all remember what Dale was about and how we can continue his cause and always keep his mission upper most in our minds. No one can replace him but all of us can honor him by continuing his work. We will miss his wise counsel but most of all, we will miss his friendship. We can work together to make his dreams of a better world for dialysis patients a reality.

My deep condolences to his family and especially his wife. Thank you for sharing him with us. We will not forget.

Bob

[Unregistered]

I've only just started reading ESRD recently, within the past couple of months. Dale made me feel welcome and like it was something I could deal with.

I would definitely like to see Dialysis_Support continue in whatever way we can. If this involves starting a new group, I volunteer to take on at least some of the work of administering such a group. I have the time and the knowledge of internet communities to do a good job of it. But that is a subject for a different topic.

The best tributes to a person's life are often to carry on and expand upon that person's work. I suggest that we all look to doing the same in whatever ways we can. I'll bet Dale would have loved to see groups of citizens in all 50 states carry forward his initiative to get dialysis technician certification legislation in their states, and to get this passed at a federal level; something like a "Dale's Law" would be highly appropriate here. Another suggestion I have is for us to give a financial award or mini-scholarship in Dale's name every year to a young nephrologist or nephrology resident specializing in research or treatment for ESRD. Many dialysis patients don't have much in the way of extra funds, but I'm thinking of a small award, something like $1000 - $2000. We can do this if each of us chips in a dollar or two a year.

I'm pretty much up for whatever the community decides to do, and/or whatever his wife decides would be desired and appropriate. Whatever it is, count me in.

River

[Bill Ford]

Oh no. I am in shock and I too have tears as I type this. What an absolutely first-class human being Dale was !

Compassion was truly Dale's middle name. Dale was a personal "rock" of
support for me. Since I joined the list in 1998, Dale was very, very kind
and supportive to me. We spoke several times on the phone over the years
and exchanged emails as well, sometimes just to check in with one another,
and I always found him friendly, helpful, and funny, too ! He even
forgave an unintentional but serious list sin or two I committed as well.
He was a real friend to me, and we talked of our going Down Under together to stir up some real trouble with Lance Down Under, one of our esteemed list colleagues. :o)

Dori, I'm more than willing to help in any way that I can in
memorializing Dale's memory. For starters, it is my opinion that in whatever form the ESRD list board continues, his name should be included in the list title. (The Dale Ester Dialysis List Support Group, for example) More should be done in his memory than that, of course.

I am just one of thousands and thousands of people whose lives Dale has touched either personally through his life-extending efforts of handling donated medicines, through his advocacy for legislative change, the Dialysis Support Group, his friendships, and the ways go on and on.

Such an enormous gift of a Dale Ester to Mankind is not likely to pass by us again any time soon. How can I help?
Bill Ford

[Unregistered]

This is a tough one, in a lot of ways the worst one yet. I can't find the words.

I am glad he went in a very peaceful way after a day of living his life the way he wanted. Still this is tough. We've lost so many members over the years; as hard as that is I've always felt grateful for the opportunity to know these remarkable people. It was through Dale's vision and effort that this happened, thank you Dale. You will be deeply missed.

billp

[Unregistered]

I am so saddened and shocked to hear of Dale's passing. He truly was an inspiration. I joined this group in 1996 and will miss him. He was a wealth of knowledge.

Connie
'Don't Ever Give Up'

[DoriSchatell]

Hi y'all,


1/ What can I do to support the contination of ESRD which benefitted me so much in the past?
We'll talk about that for a while and see what makes sense to do. I don't think we want to make any sudden decisions. Let's give folks a while to process.
2/ What to ask my executors to do with my stash of immuno's when I won't need them anymore?
Good question; wish I knew. Dale was part of a nationwide network, but unless those folks somehow identify themselves to us, I'm not sure how we'd find other members of it.

[DoriSchatell]

If this involves starting a new group, I volunteer to take on at least some of the work of administering such a group. I have the time and the knowledge of internet communities to do a good job of it. But that is a subject for a different topic.Thanks, River. It's great to know that we have so much Internet savvy and listserv administration talent in our group (this certainly isn't something I can claim), and sharing the load may make it easier.

I'll bet Dale would have loved to see groups of citizens in all 50 states carry forward his initiative to get dialysis technician certification legislation in their states, and to get this passed at a federal level; something like a "Dale's Law" would be highly appropriate here.
I bet you're right about that.

Another suggestion I have is for us to give a financial award or mini-scholarship in Dale's name every year to a young nephrologist or nephrology resident specializing in research or treatment for ESRD. Many dialysis patients don't have much in the way of extra funds, but I'm thinking of a small award, something like $1000 - $2000. We can do this if each of us chips in a dollar or two a year.
Cool idea--keep 'em coming, and thanks for joining our community!

[DoriSchatell]

Oh no. I am in shock and I too have tears as I type this. What an absolutely first-class human being Dale was !
I couldn't agree more, and have certainly shed buckets of tears since yesterday. :-( Dale was so passionate about helping others--he would be so thrilled that folks want to continue his efforts. He was a terrific friend to so many of us.

For starters, it is my opinion that in whatever form the ESRD list board continues, his name should be included in the list title. (The Dale Ester Dialysis List Support Group, for example)
Great idea.

Such an enormous gift of a Dale Ester to Mankind is not likely to pass by us again any time soon. How can I help?
For now, stay with us and be part of the conversation about how we'll move forward. It will take us some time, no doubt, to figure things out with YahooGroups, listserv administration, etc.

[Unregistered]

Keith and I are very sad to read about Dale's passing. It seemed he was doing something he loved and had the people he loved around him at the time of his death....this is a good thing. His dedication to and influence on the kidney community will be missed.

I wanted to also let Dori and BillP know that we want to support you, as well. Please let us know if there's anything we can do to help.

CosmicKelly & Keith

[Unregistered]

When I was diagnosed with ESRD in 2003, I had nowhere to turn and didn't know what I was going to do or how to handle it. I stumbled onto the Dialysis Support group by accident and have never left. I can honestly say that if it weren't for that group founded by Dale, I wouldn't be here today. Thank you Dale and Rest In Peace.

LeRoy Holmes Jr.
GA

[Unregistered]

I am in total shock with the news of Dale's passing. What a wonderful man! He committed so much time and energy to all of us on this listserve. This place has been a beacon of hope for me. When I first came on here about 10 years ago...I felt very alone in dealing with dialysis. He was always encouraging, in front of and behind the scenes. I feel blessed to have known him.
Dale..."God bless you and keep you, make His face to shine upon you, and give you peace."
Debbie (Tygs)

[pkdlinda]

Thankyou Dori for placing your post about Dale on the board! I sat there and stared in shock at the news. My comfort is that Dale is visiting with Lee and Old Borris. Dale was such a modest man and until I sought to find out more about him did not realize all that he had accomplished for the renal community. Having just lost my husband my heart goes out to his widow. I know how painful this time will be for her and thoughts and prayers are with her, and the rest of Dale's family and friends. I hope we can continue Dale's dream! Lin.

[Unregistered]

So many times I have cried as members of this list have passed on. I just cannot believe that it is Dale this time. I don't contribute much, but have been helped so much since I joined in 1997 after my son's kidneys failed suddenly. Thank you Dale, for everything you have done to support us and me, in particular. You are (it isn't were - you are still with us in our hearts) a hero in the truest sense.

Nancy in Georgia

[Unregistered]

Condolences to all who new Dale from the Administration Team of ihatedialysis.com

Sluff, goofynina, RossMAN, Bajanne, Kitkatz, Okarol

[DoriSchatell]

I'll share this link with Alison after things settle down a bit, so she can see how important Dale was to so many people.

I'm sure you all got the auto messages today, which is a reminder of how consciencious Dale was about helping everyone to learn about how the list worked and how to post so folks would get the most benefit from each message. Pretty cool!

[Unregistered]

Condolences from the members of www.angiee1973.proboards42.com forums who will miss Dale tremendously

[Unregistered]

I am so shocked by Dale's death. This group has been such a help to me since I've been on dialysis. I have always felt there was a place where people would understand and care. Dale and his hard work helped so many people. He will be so very missed.

Sally

[Unregistered]

I am surely among the thousands of others who are shocked to hear of Dale's passing. Shocked, saddened, crushed. Then I think of him as a person, I smile when I think of the things he accomplished and the people he tried to help in so many ways and my shock is transformed into respect, honor, gratitude, humility and resolve.

I really enjoy the listserve because I could have the messages come right to my email box and I didn't have to go to a specific board and search for messages. I would hate to have the listserve shut down without a replacement.

He was a good man. He loved life and enjoyed it to the fullest without doubt. He will be missed. Hugs to his wife and family and to all on the listserve.
Blessings & Peace,
Amy S.
FAITH MANAGES

[DoriSchatell]

Amy, we absolutely will replace the listserv. It's pretty likely that we'll have to start it over, unless it's possible to find the password--Yahoo will not give it to anyone else. But email coming to you is easier than having to go to a message board.

[Jonathan Finger]

Dori, et. al.
I'm so sorry today to hear of Dale's passing. Not because death is something to fear and be sorry for, but because of the loss to the ESRD community.
Dales has been so important to so many people, and the effects of his work are far reaching indeed.

It sounds like you and Bill have things under control - but please know that I am happy to help in any way that I can, including putting my ESRD forums back online should the list need a place as a temporary or long term home.
Again, I am sorry to hear of Dale's passing, but am happy to know that he passed doing something he loved. So cliche to say - but true nonetheless.
I will miss Dale - but feel more obligated now than ever to try to contribute something positive to the ESRD Community.
Please let me know how I can help.

Jonathan Finger

[BobsKCinFl]

I have mailed a contact I have at Yahoo and explained what has happened. I have further explained that we do not want to give up the list but rather need to appoint a new owner and asked for his cooperation in doing that. I expect to get a reply from him tomorrow and will let everyone know where we stand when I hear from him. I would hope that we can keep our list name and site information without having to move it all but we shall see.

Dale would be so very pleased at the out-pouring of kind words and heart felt appreciation for his work and love.

Bob

[Unregistered]

I have mailed a contact I have at Yahoo and explained what has happened. I have further explained that we do not want to give up the list but rather need to appoint a new owner and asked for his cooperation in doing that.

Well done Bob - I cannot believe that the Yahoo administrators, on becoming aware of our circumstances, will not help us take whatever steps necessary to continue with Dale's marvelous legacy.

Lance Down Under

[Unregistered]

I have never posted on the boards before, so I speak for the unknown people out there with ESRD. This board has helped me tremendously and I feel terrible about Dale's passing. Please send my appreciation and condolences to his family. I felt chills as I read the message of his death. I immediately felt to pray for this man and his family that I barely know. I hope this board remains as a tribute to his determination and courage.
Thank You Dale

[Bill Peckham]

I have mailed a contact I have at Yahoo and explained what has happened. I have further explained that we do not want to give up the list but rather need to appoint a new owner and asked for his cooperation in doing that. I expect to get a reply from him tomorrow and will let everyone know where we stand when I hear from him. I would hope that we can keep our list name and site information without having to move it all but we shall see.

Dale would be so very pleased at the out-pouring of kind words and heart felt appreciation for his work and love.

Bob

I will be interested in what your contact has to say, after spending a little time on Yahoo Answers and the Yahoo Suggestion Board I am feeling discouraged that Yahoo will help, other groups have been in this position or something similar - abandoned where an owner/moderator just disappears without explanation - and the list is left in limbo.

The route taken by others in our position is to gain access to the person's email account and get yahoo to send the password. Dale spent hours on D_S most days which sounds like a chore but he never wanted or accepted moderation help, D_S was a passion. Dale was a pioneer which is easy to forget in an age when listservs are so easy to set up. The original listserv was housed at Washington University in St. Louis and I think was set up as a partnership - with Dr. Lundeen? and one other, and it was contentious (does anyone know the story?) Ron Bull was an early, influential member who passed right before I joined - was anyone a member back when Ron posted? All this is to say that we really do need to keep this going, I hope there is a way.
billp

[Unregistered]

Tears mist my vision every time I think of Dale. I am having trouble coming to accept the fact that he is no longer with us.

I joined this group around 2002. Depressed and distressed, I was sinking in a personal, deep "Slough of Despond" as I approached my inevitable date with dialysis. Fate led me to Dale's group and under his guiding hand of personal encouragement and the welcoming attitude of members, I educated myself and came to grips with living on dialysis.

Over the years I exchanged a number of personal emails with Dale and worked with him on the Bush Baby project. I felt we became friends as I glimpsed the full measure of the man and his propensity for furthering the Good, in so many disparate realms of Life. Only then did I become aware of Dale's fragile physical condition and the difficulties he laboured under. Not that he ever complained. The more I got to know him, the greater grew my admiration for his humanitarian qualities. I was astounded at his enormous capacity for work, his far reaching, limitless, quiet compassion for his fellow travellers, the depth of his knowledge and his ability to research for information.

Mostly, my mate Dalee was just a great humanitarian and I feel the pain of his loss so acutely.

Farewell my friend

Lance Down Under

[Joanne Bundrick]

It was with great sadness that I let the other members of another support group know about Dale's passing.As a member of his group although most of the time I was a lurker,I learned a great deal.I hope some one can get the group together and maybe there can be at least two or more moderators so this situation doesn't happen again.
It is hard to check my e-mails and know there aren't going to be any from this great group.
My heart goes out to his family.

Joanne Bundrick

[LindaE/transkid05]

To Dale's family,

Please accept my condolences and prayers. I, as so many others, never met Dale but he guided me during my dialysis days making the transplant transition so much easier. While I don't post much anymore I still continue my learning and Dale's input into what I pass along to others will be greatly missed. The seemingly flawless functioning of the ESRD site inspired me to also begin a support site and by doing that I truly understand a fraction of the work he put into it. All of us at semokidneydialysis-transplant.name send our prayers and thoughts.

Linda Essner, Cape Girardeau, MO

[Unregistered]

My husband, Ted, and I were greatly saddened to hear of Dale's death. As Christians, we had talked with him by phone and shared our faith. That is a great comfort especially now.

I joined the listserv, back in 1995, I believe. It was the early days when there were few pt. support groups online and no doubt it was a great deal of work to set it all up, and keep it running, back then. I think at that time there were about 40 of us and yes, Bill P, it was often contentious. Patients for the first time had a place to vent, and many were angry or depressed & in those pioneering days, often vented in some inappropriate ways. Dale did his best to "tame" us herd of cats and keep things civil. I marvel that he never gave up, but hung in there with everyone. Bless him!

He helped Ted write and work on legislation for First Person Consent to improve organ donation which now has been enacted in many states. Dale had experience working with legislators and inspired & encouraged Ted when he began in FL some years ago.

When Ted got his transplant, we dropped out of the group, but got back in a year ago when Ted went back on dialysis.

Absolutely, let's keep the online group going. It is a lifeline to so many and through it, Dale's memory and legacy is alive and well.

Blessings to you,
Laurie

[Unregistered]

I had recently joined the support group and truly found this to be a place of comfort and support to the overwhelming feelings of dealing with ESRD. Thanks to Dale and all his hard work he has given to us and the listserve, what a great thing!
May Dale rest in peace, may all our thouhgts and prayers be with his family and loved ones and may we continue his legacy.

[Unregistered]

Hello,
I hate to post this now in time of Dales grieving, but I can sure use a little advice. I just completed my blood tests, my GFR is a 9%. It is not holding and droping a point or two a week. I am planning on PD dialysis, but do not have the catherder in, and my appointment is a few weeks out...probably early next year...
Am I going to make it by the time I get it in and with the training involved?

[DoriSchatell]

Hi unregistered,

I know that Dale would have wanted you to get the info you need--please don't feel bad about posting your question! If I were you, I'd be doing everything in my power to move that PD catheter placement appointment up. Otherwise, there's a chance that you'd end up having a hemo catheter placed (a central venous catheter) and starting hemo on an emergent basis--and then doing PD later.

If that's not what you want (and it's unfortunately what probably a majority of folks get), you need to get that PD catheter sooner. If you can't get an earlier appt. with the surgeon you're scheduled for now, is there someone else who could do it sooner?

PD training only takes a week or so, and once the catheter is in place, it's best if it can heal for at least a couple of weeks. So, getting the catheter right away might well mean that you could be all set by the time you need to really do PD.

If you haven't found and checked out our other site--Home Dialysis Central, you may find some useful info there and talk to folks in those message boards. It's at http://www.homedialysis.org. There are also listservs especially for PD where you can learn more.

[Unregistered]

Thank you for the reply. I have contacted my doctor to see what his next steps are going to be. It really seems he is moving a bit slow. The DR I am waiting for, for the PD catheter comes highly recommended..but with his schedule, holidays and vacations, It is going to be close.
Again, thanks for the reply and the link, and keep up all the good work!

[Unregistered]

I am Dale's brother and with his wife we are writing this. Dale would have wanted someone to take responsibility for continuing the care and attention he provided to those who joined and participated via the website he founded.

Dori, I will call you to discuss. Dale left information regarding his membership and we have access to his account and setup information.

We are interested in interviewing potential candidates to continue Dale's legacy.

Lee

[DoriSchatell]

Lee, and Alison, we are so very sorry for your loss, and it is good of you to think of Dale's legacy and of getting this listserv back up and running as a tribute. It's been a unique and valuable resource since 1995, I think, and Dale devoted countless hours to helping the more than 1200 members cope with kidney disease. I know that all of us who took part really miss it!

You can reach me today at the Medical Education Institute (608-833-8033), then after Jan. 7--but rather than waiting for me to get back, Bill (bill.peckham@yahoo.com) or Bob (bobskc@revealed.net) understand how Yahoo Groups works and are able and willing to get things going again. I'm sure either of them would be happy to talk with you about it.

[BobsKCinFl]

Lee,

Dale was so very close to all of us and he was our leader on the mail list. He provided untold hope to so many people and we can not replace him. None the less, he want his list and help to continue and there are a few of us who have been long term members who were allowed to post directly to the list without Dale's review of our posts first. It is our intent to continue his legacy and to have back-up among ourselves so we always have someone else to step forward.

We also want to honor Dale on the web site for the list by telling others who began the list and the wonderful things he did for terrified folks facing dialysis over the years. We can do this with Dale's user id and password but without it, we would be forced to make a new list name and have the members transfer their memberhsip.

As Dori explained, both Bill and myself have yahoo list experience. I currently run two Yahoo mail lists. I believe that both Bill and I are computer literate and Dori is our expert on all things legal along with the latest advancements in kidney disease treatments. It is our hope to continue Dale's legacy and honor his memory in every way possible.

Your help in accomplishing this will be greatly appreciated by not only us but by all the list members who benefit from Dale's efforts which will be on-going with the list saved from being abandoned.

Again, our hearts go out to you, his family, and we hope you can find a measure of happiness in this holiday season.

With kind respect,

Bob Arbuckle .. (BobsKC)

[Unregistered]

I am Dale's brother and with his wife we are writing this. Dale would have wanted someone to take responsibility for continuing the care and attention he provided to those who joined and participated via the website he founded.

Dori, I will call you to discuss. Dale left information regarding his membership and we have access to his account and setup information.

We are interested in interviewing potential candidates to continue Dale's legacy.

Lee

Dear Lee and Alison, Our heartfelt condolences at this time. There are many on his list who are willing and capable of helping with the list, even if the week is divided among 2-3 members who can take 1-2 days per week to manage the list. Dale has many admirers and those who are here to help.

Best wishes for you and your family as you move through this time of year without your beloved friend and family member. You have our thoughts, our prayers, our hugs and support.
Blessings & Peace,
Amy in MO
FAITH MANAGES

[Unregistered]

I was on Dales list since 1997. I've seen many people come and go, some passed on. I never though Dale would die--I know everyone dies but Dale seemed larger than life, a courageous, fearless person who did so much for dialysis patients. He gave us all hope and encouraged us that despite kidney failure and dialysis we CAN survive and and we CAN live our lives. In 1997 I still had my transplant but it failed in 2005. I joined in 1997 because I wanted to learn more about dialysis and meet other people that had gone through what I have. It became invaluable to me after my transplant failed. I learned so much from the list and was encouraged. The legacy Dale leaves is a great one and we all have to try to live out lives to the fullest despite dialysis. Dale would have wanted it that way.

Donna Tackney

[DoriSchatell]

Hi y'all,

I wanted to give you an update on where we are. Dale's twin brother, Lee, does have the user name and password for the "old" listserv, and has let some messages through and replied to some, though there have been some gaps and delays.

Meanwhile BobsKC has started a new listserv onto which most of the "old-timers" (89 folks so far) have migrated, and it is very active. If you haven't yet found your way to it, it is at: http://health.groups.yahoo.com/group/dialysis-support/.

Ideally, we will combine the groups back together. It's confusing to have two.