There should be a convention for us. Since we are all alone at this.
I really enjoy having someone to bounce things off of. Thanks to anyone whose answered my posts and to all who read them with an honest heart and tried to take a stab @ a topic but maybe was stumped :shock:
Meeting would be great even if it was just a one time thing-I’m sure I could rustle us up a doc or two to speak for us and definitely a few nurses
I would say not at all wishful thinking, some of the posters from another board in the UK, Kidney Patient Guide, have arranged a “web meet” this Saturday, I assume you are in the US?? are there more localised groups?
I’d love to meet up with a lot of people, but it takes a fairly big amount of organisation.
I’m not sure where you live, Manisha, but the AAKP national convention is coming up Labor Day weekend, and RSN is having their meeting October 6-8. It’s not this group, but every time I’ve gone to speak at one of those meetings, they’ve been very helpful for folks to meet each other in person and share tips & support.
The NKC Kidney Expo is October 14th in Seattle. Last year a couple people from the Dialysis_Support list came, one from NC who is now on the NxStage. I’m helping to organize this years Expo and I’m in the process of setting up a hotel package for Expo attendees.
I have also proposed that NKC offer visitors from outside the US the opportunity to dialyze at Medicare’s reimbursement rate … so you self pay Aussies could visit Seattle and receive dialysis for about $150 US per treatment.
I have also proposed that for out of state Medicaid dialyzors NKC waive the 20% copay.
THere’s no reason individuals or small groups can’t meet up at a mutually convenient venue. Folk in adjacent cities or states. GO to one another’s support group meetings perhaps (as I did with Beachy a few weeks back -we live about 125km apart, her meeting was in between @ 60km). Or some non-ESRF-related event where you can meet up - things like berry festivals/rodeos/cultutal events…
So is Dubai…Rio…Tokyo…we’re opposite sides of the planet!
If I go thru the hassle of organising dx elsewhere (I dunno how ya do it Bill!! ) my 1st priority is to visit my dear old Dad. Maybe I could meet 1 or 2 of the U.K. mob then…? The problem with us lucky nocturnals is that going anywhere involves only getting 1/2 the dx. NO fun in that eh? :roll:
Manisha & everyone, I just thought I’d like to share with you a link to some of the photos from a meet of users of Kidney Patient Guide.
15 in total turned up representing every single aspect of dialysis, from predialysis to transplantation & all aspects of dialysis in between!
If you click on the images by cybercast, those are my photos:) although there are other contributors.
You can also see a few photos from a previous transplant games, 2004, by going to my blog.
seattle in October??? Probably can’t do it, but would love to. I am planning a trip to oregon in a month or so. Klamath falls area. It will be my first trip with the NxStage machine. I like having this board to post to. I wish mroe patients knew about it. I didn’t find this on google, I found it thru another message board. So far this is the busiest one I have seen. .
Most of my human contact is thru the computer :oops: