Had the first support meeting today

[The Noob]

there were 6 of us. we met at restaurant and no one was there. all went well until place filled up and got noisy.
all in all went good i think. dh was not feeling well and spent the time outside in the truck. felt well enough when we were done, to go see movie.
might opt for different setting next month. we decided to do it once a month, plus whenever we are at the clinic.

nurse posted our flyer. one member says nurse says Davita cannot be affliated with any support group for clinic.
also that they can't afford some better chairs in lobby, and doesn't know when wifi system will be fixed.
says they have a night once a month for education at hospital. i did ask what they were doing for patients/caregivers mental health?

gripes from members include why there can't be a curtain by each bed in case its needed for privacy. a new patient (a woman in 50's) scared to death, brought in to do first hemo run in clinic. placed in room with other 8-10 patients, male and female, had her shirt opened wide with no covering, for access. she was sitting there in her bra. another member complains that one or two of the patients always get sick or have an "accident" during treatment, and there is no privacy for them. or for anyone near them.

we did have fun comparing our insurance statements..all around about the same: 40-50K every 28 days just for in clinic hemo. not counting labs, doc visits, shots, etc.

my goal was to basically set this up and established, as if dh gets tx soon we won't be there. i do love them all so, they are precious..

[okarol]

  Well done! Sounds like a great beginning!

[Poppylicious]

Sounds like it was quite successful ... well done, you! 

Because everything over here (UK) is funded by the NHS and most dialysis provision is under the care of your local hospital, there tend to be fundraising committees over here.  Blokey's hospital kidney association covers his unit and three satellite units.  They get together and do things, plus they raise monies for all sorts of things relating to the units and the welfare of people on dialysis.  Would you be able to raise money like that (for things like curtains) or does the fact that the process is different in the States mean that you wouldn't be allowed, or it wouldn't be wise? 

If dh gets his transplant would it be something you'd continue anyway, just to support? Or is it too far to travel? 

I'm so pleased it went well.

 

[The Noob]

oh. if only..i had already written an article for the local paper. if i could do this, i'm sure we'd have merchants step up to donate things, for which i'd then write about their generosity. but no, the clinic says they can't have any affiliation with us due to liability, and nothing can be donated to the clinic for same.

i would try to keep up the group until one of the others could take it over. i'd miss the people for sure!

[Ang]

sounds like a good start

[The Noob]

thanks Ang and Everyone. i think i will look for a better more quiet spot for next lunch though. some of the best "support" we did was in the clinic lobby. we were all there anyway. it was too noisy and rushed at restaurant.
i want to get some metallic green ribbons to give out.

[texasstyle]

I think that is great you were able to get some people together.