G Ma will try NxStage

[G-Ma]

ohhhh thank you...the coveted stick....you are my heroine      

[G-Ma]

Well I tried...yesterday cut short as venous pressure was high and couldn't get the needle changed and today on first try arterial was too high and I couldn't get it to change, 2nd try venous clotted so pulled and held both, dau in law tried for 3rd stick and vein rolled on arterial and infiltrated so I said quit...I will try tomorrow and if no luck I have decided I will go back to in center...I wanted to do this myself to be able to travel but this rolling vein is beyond me so might be time to give up...I'll know tomorrow.  I am so very tired of it all today.

[okarol]

It's sounds frustrating but you really have come a long way. 

[thegrammalady]

and at least you know you tried.

[petey]

Hang in there, G-ma!  Marvin has rolling veins, too.  I place my thumb and pointer finger (left hand) on both sides of Marvin's fistula as I'm cannulating him with my right hand.  This seems to help "hold" it in place.  Now, I don't squeeze it or apply a lot of pressure -- just kind of firm hold.  Hope this helps.

[G-Ma]

Thanks petey, but I am sticking with my non dominant hand and have to count on someone else holding the vein so I'm not feeling it like I would if I could hold and stick.............that seems to be my big problem so I don't know what to do....or how to change this.........

[paris]

Just wanted you to know I was thinking of you.  I hope it all gets sorted out soon and you can stay on the NxStage.  You are really giving it a good try.  Hang in there! 

[Wallyz]

That first week at home is usually  a bitch. Take an in center treatment if you need it, but give it   a month of trying.  Daily really is worth it.

[G-Ma]

Thanks all, yes I promised my kids I will try a little longer and today went very well....just need to have help corralling that crazy vein.  Got my new cycler today and nurse finally came and got another sample from the new chassis so another week on bags and hopefully it's on to PureFlow then.  I'm trying to stay positive.
Ann

[G-Ma]

     Yes, today was H _ _ _, thanks to Davita and NxStage...my run was very good...I ordered more dialysate on 9/8 and guess what, nothing here yet, faxed in an order on 9/9, nada....called this morning, was told oh she didn't put the order in until yesterday...well I'm out...ohhh ok, it should be delivered on Monday...WTF...again....called back asked for my rep, not in yet, called in an hour, is in but insists she put the order in on the 9th and will find out where it is being held up and told me to go to Davita and pick some up....never called back...I called my nurse, told her and oh yes no problem, come in and pick some up so I told her what else I was short on since I'm driving 1/2 hour to pick up dialysate..no problem, come on.  Finished my run, drove to Davita, no one answers the doorbell...no one, 15 min later, no one.  1:15 pm I called Davita, got the answering machine...finally called the on call nurse..head trainer answered...said "why would you come to the office today?" duh...said that is not how we do things...duh...finally my nurse got on the phone, apologizing for about 10 min, "forgot" I had called..."forgot" I was coming.."thought" someone else would take care of me and both trainers took the center director out for a surprise birthday lunch..wasn't that just too nice?..now said she will bring my supplies right out to my house...I drove back home, another 1/2 hour...more gas...my son is now going to call his attorney for advice and the state health dept about the dirty equipment....by this time NxStage is calling fast and furious...they will overnight dialysate, don't know why this was not offered this morning...finally at 4:15 nuirse and director arrive with dialysate and want to be buddies...director keeps saying what can I do to make this right???..NOTHING is all I said each time.  You are good at doing that...she then had the balls to say that my son should not have had to put everything together and connect everything, that is Davita's job....she finally made me laugh as we all know that is a bunch of b_ _ _. They finally left, NxStage called again, gave me the name of a different company in Charlotte that uses NxStage so I can call and check them out so we shall see.  I hope you all were having a much better day.
Ann

[monrein]

I'm so mad right now on your behalf that I could spit further than a camel being forced to get up.   The hard part of home hemo is not supposed to be the bureaucratic run around BS.  I know that it'll all work out in the end but that should not be happening to you. 

[Jay72]

I all can say is WOW!!! That is totally unacceptable!!!  Hope it will only get better after that B.S.

Good Luck!!

[G-Ma]

Thanks monrein and Jay...no that should not happen to ANY of USm, which is why my son is pushing every button he can now.  Go Ron.

[Cincygrandma]

G-Ma, Read this entire post tonight and give credit to you and others who have the determination to dialyze at home.  I've never looked once while being cannulated and it's been almost a year now.  Doubt I ever will.  It makes funny pains go thru my body just thinking about it.  As much as I dislike going to in-center, I'm going to try to hang with it until I get my transplant call.  I admire your tenacity though!

[okarol]

Wow G-ma - that is really ridiculous! Luckily they finally showed up but it's scary to think what would happen if you couldn't dribe or weren't so assertive. I hope you get a better supplier. 

[Vlynn]

Good Luck My mom uses Nxstage!

[kitkatz]

I would set my letter writing husband on their asses!   

[G-Ma]

I am going to talk to the "other" home center in Charlotte.....Yesterday I had my fistulagram, piece of cake after the valium salt lick, less than 50% was open on this new fistula and nurses should have seen the red flags which I now know as the surgeon thoroughly explained them to me, including the hard pulse, excess bleeding and wheezing sound.....and they had me believing that was all normal...too funny...I spent this week freezing on dialysis and couldn't figure out why but it appears the nurse did not connect the warmer all the way so it was going off and on..more off...and when we finally saw it the line was cold...I was sure there was ice going through my veins and my g dtr kept piling blankets on me...called nurse who said "well if your grandma is really cold just unhook her for today"...really cold wasn't even the word..and I kept forgetting what words to use when speaking...this was Thursday..so I made sure the warmer was on and working for Friday....Friday then,  my NEW cycler which was set up Monday..started this rythmic chirping or sqeaking, same speed as the pump no matter what the setting...I was willing just to pour some WD40 over it....."is there a black cloud over my head all the time?".....this is beyond funny already....called the nurse who had never heard of anything like that so called tech support at nxstage and technician has never heard of anything like that but is overnighting a new cycler...oh god, another setup and huge box in the living room.  I am going to use the cycler again today and if it quits I will for the day too..This bad "cycle" has got to end....I am thinking positive about this....I hope you all have a wonderful weekend, I plan to.  I have decideed I am going to spend most of my Sunday in bed with a cozy quilt, teddly bear, book or nintendo or the sandman and get some recuperation.
Ann











o get better...right???

[Wallyz]

You have just got to learn to check everything yourself. You can't trust nurses to get it right.  I love my home hemo nurses,but I learned that they make more mistakes than I do settign up the machine, probably becasue their life and comfort doesn't depend on it.  Keep plugging away, keep focused, and keep learning.

[G-Ma]

Thanks Wallyz....And the beat goes on...like the song..however in this case Davita experiences go on....First day on PureFlow at home...set heat at 12 like I was told but cold..my temp started at 97.7 and an hour into D it was  96.2 with setting on 14....called dialysis and they didn't know what the max temp could be so said they would call the NxStage Nurse...fine...called back and said not over 16 to keep Red Blood Cells safe so we said fine...set it on 16 and Davita Director from H_ _ _ said where is your caretaker...brainless me said right here...my granddaughter and she started yelling at me...yes yelling...said you signed papers saying you would not dialize without an adult present...ummm...no....just for training as they were and training nurse knew the scoop and did several practice runs with g dtr and she has had to do a bolus of saline and emergency rinseback so I know she can do it and anyone can call 911...then the Dir from H made her mistake by saying I was there every day and that didn't happen...oh yes she did...I stopped and said you were very seldom in the office let alone in training...(that was a complaint from training nurse)...but I didn't say it..seems like Dir is more off than on....she then yelled "you can't do nxstage because you don't have an adult partner" at which point I just disconnected..no more.  I called the "other" home hemo center in Charlotte which is an independant, one nurse and busy, talked to the nurse, she can see me tomorrow, said only paperwork is needed to transfer, will call Davita and get the info she needs and should be painless...oh yeah.  Another letter to NxStage with details and 5 min later a "damage control" call from Dir from H at Davita...telling me the plumber would be here within the hour to fix the shoddy line job he did..and she was trying to be so very friendly.  I said fine and disconnected...at 2:30 a man delivered a new cycler and at 3 the Dir from H called and walked me through programming the new cycler...I already had the book out and was working on it.  Then she had the nerve to say "If u"all ever need anything be sure to call"...I don't think so. I have to switch nephs but that is the least of my worries..they say neph at new clinic is very good and I met the Davita neph 1 time for 2 min so not concerned about that.  My first In Clinic is supposed to be Friday so hopefully my paperwork is done by then.  Run and pressures went very well today and did not have to worry about LOW BP   
NxStage said "they cannot drop you as a patient" which is interesting news since we all know Davita has done that before.  I hope all of you had a great Fall day, definately not like this.
Ann

[monrein]

Ann, your cool is really admirable.  I think I'd be in jail, up on murder charges or assault at a minimum.  Good decision to switch and let's all hope it's smooth sailing from now on. 

[G-Ma]

Thanks Monrein....actually nurse was supposed to come out and program new cycler but I called and said do NOT bring Dir from Hell..so I guess both decided not to come...shoot...I had told my granddaughter to run away when I started with my bat so she would not be involved...I'm ok with prison at this point just so other people don't have to go through this with Davita or Dir from H and thanks but my cool has reached its breaking point I do believe.                 I so need a drink.   My new goal in life is to help the Dir from H lose her job, then she can't pay for her 40 foot sailboat she bought in August and had it moved here from the Great Lakes area.  Yup, that is my goal.

[monrein]

    Go for the "goal" girl.  And good luck with it.

[jbeany]

 
You go, girl!

I think they get so used to seeing us in chairs that they forget we can stand up for ourselves!

[monrein]

I think they get so used to seeing us in chairs that they forget we can stand up for ourselves!

What a great line jbeany.   I may need to use that some time.