Had Second Support Meet Today

[The Noob]

well we had our second support meet today, we do it first friday of each month. it went well and more are coming. the restaurant is very good to us, gave us the private meeting room, which is right next to the buffet and bathrooms. we tip good.

discussions were updates on everyone and discussion of fistulas and all the problems they've had with them vs the chest port. in addition, still talk of needing not only a wifi connection at clinic, but a desktop computer? many do not have computers or can't afford internet. they are telling these new folks to educate themselves via the internet, but they do not have access. the clinic advertises they have wifi but its always "out of order".
there is a desire for privacy curtains if needed in the hemo unit, better seating in lobby (chairs are small and very hard), and the gripes that EMS, prison guards, transport workers, go in and out of the hemo unit with no masks, gloves, gowns, booties, nothing. (though family members not allowed).
these are on-going discussions which seem to have fallen on deaf ears at the clinic. 

it was a good meeting and illustrates what is so lacking in the field of care for these families.

forgive me, i am exhausted. its been very hot here. i am nursing a newborn kitten and brought it with me in a small cooler so i could feed it, didn't want to leave home all day. (don't ask).

my son went with me to meeting, DH was at clinic. they used his fistula today first time. they could only use one side and it clotted? i am getting limited info from him. he didn't need the cream, though i picked up script just in case later he may want it.

my daughter got there later and we went to fair (sent DH home, tired and hot). we lasted an hour then went to wallyworld for the a/c. no one gave us any grief for bringing kitty in cooler. hahaha..

ok, so after a busy hot day i am beat. my son and i were early so stopped in thrift shop as he wanted to find some new shirts. he found one that fit perfectly but turned it over, it said "special olympics"..
LOL i told him to buy it, he'd be in good company! if what we do is not "olympics", don't know what is.
 

[okarol]

  Sounds like a good group and great topics!

Hope the kitten is ok. 

[jbeany]

Wait, DH's fistula clotted or the machine or just the needles?

Perhaps now that the support is getting some organized consensus on what the majority wants are for the center - maybe a petition, signed by as many patients as possible?

Maybe a laptop would be a better option for the center?  If you could organize a donation of a second computer, get the wi-fi fixed, then those without access at home could at least research while they were hooked up.  They could sign up for it like a lending library?  Of course, that would involve getting the center on board with it.

Glad the group is growing.  There is strength in numbers!

[looneytunes]

Sounds like the support group is gaining!   

[Ang]

things are looking good

[The Noob]

hey yall, kitten is doing good. 5 days old and well.

well DH gave sketchy info, will have to decipher a bit. the petition is good idea and i suggested this many times. drew up one for all to sign. everyone seemed to be afraid to step on toes. all i could say is that its worth a try. be diplomatic about it but can't hurt to ask. i did talk to head nurse about all of these things and got "no" and vague answers on rest. its touchy as i am sure we can get community to donate something, or one of us to, but then all the liability stuff gets in there. suggested a set up like the library has if nothing else. couple family members and.or patients who are savy can keep it updated, even just having a desk top puter in lobby would be good. they have an education night once a month at hospital put on by clinic nurses, but they don't do it unless several peeps sign up ahead of time. this means travel at night, after D and many are not able/willing to make a special trip. well can't blame them. the rest of concerns seem to be passed over. hence the petition of sorts would be good to spell it out.
when i was going there weekly, we'd all sit in lobby and discuss this and things were better monitored, for lack of a better word. we did set up a phone chain in case theres news to get around.
one lady, her family member is very depressed and has no support at home. has not been counseled about options, doesn't seem to know exactly what is happening to her and can't get answers. family hasn't been schooled. patient seems to feel pretty much abandoned and scared. this is why the support group is vital. bless the family member trying to help. alot of them feel its more like an assembly line care to generate moolah.
ok, DH says the tubing and needle were clotting, not enough saline? we'll have to read more on this.
everyone pretty much in agreement that most is run as though patients come in, get done whats needed and are expected to sucomb no questions asked. not trying to pick on the clinic or be testy. its obvious there are some weak links in the chain.