anyone buying their own needles? how?

[fearless]

I started buttonholes and home hemo using Medisystems needles.  My supply ran out and the clinic says they can't get them for me, they have some kind of exclusive deal with JM.  But if I want to pay for them myself my doctor is willing to write the prescription.

#1 I've been told you can't order them unless you have a medical license.  So I guess the doctor's office has to order them?
#2 Why can't Medicare pay its customary compensation?  Wouldnt they be paying for any needles i use?

Again, bad medicine.  With the JM needles I have difficulty cannulating, which isn't good for my fistula, and my pressures run higher.

Anybody order their own needles and pay for them too?  Any info?

thank you!

[amanda100wilson]

can you get your doctor too Terrence for you?  if there is a medical necessity, ie, it is better for your fistula, then your clinic should be obliged to order thse needles.

[boswife]

I was told by another NxStage user that If DR ordered, they have to accomidate you.  Im hoping for this as well as our 'center' has changed hands and i believe will be changing needles as well.  I want the medisystem 3/5 needle and am going through the same thing.  Im wondering,if you DO order, could you let me know how much the cost? It may or may not be worth it for us as well. 

[noahvale]

*

[boswife]

Thank you Noahv,,, I do have dr's "agreement" on bo using the needle, but originally, he said he wouldnt fight the center on it as it's not THAT much of a big deal.  But.......... the center agreed to do it, BUT, now we have switched to davida or frecinias (sorry for not taking time to spell correctly) and they use different brand that doesnt carry medisystems. So,,,,,, this is still going to be my battle, but i am going to keep at it..

[fearless]

can you get your doctor too Terrence for you?  if there is a medical necessity, ie, it is better for your fistula, then your clinic should be obliged to order thse needles.

Amanda, what does this mean? "too Terrence for you?"
I do thing it might be considered a medical necessity.  But I fought a HUGE battle trying to get the 5/8" needles and it never happened.  Since I'd been doing OK with the Medisystems 16G, and the accompanying steripicks, and now am having trouble cannulating with the JM needles, and seem to have higher pressures throughout treatment (and their picks are useless) I'm willing to do up to whatever I can afford to get them.
GOD I AM SO SICK OF FRESENIUS PUSHING ME AROUND.

Amanda, are you going to try to do nocturnal?  What sort of treatment are you doing now as far as liters, speed, FF, etc. (if you don't mind my asking)  I'm doing 20L, 32FF, 300bfr 5x/week.  My treatment time is 3hr.40min.   On the one hand i think it's not enough dialysis, on the other hand I can't imagine doing more, unless maybe it were nocturnal.   But I don't think I can change anything without my clinics cooperation.  Once again I had to twist their arms to let me run at 300 instead of 350. 

anyway, thanks so much!
 

[amanda100wilson]

I think that the word should have been prescription ( wierd what auto-correct does).  actually I am in the process of switching nephrologists and clinics so that I can do nocturnal, and hey have just ordered the NxStage machine and Puteflow.  I haven't used the latter so will need to do some training on that.  apparently they have just brought out one with a bigger capacity.  excited but nervous.

[fearless]

Hi again Amanda.  I'm working on getting the needles.  The social worker at my clinic is incredible.   She's seeing about the financing.  (thanks for your advice)
Where are you that home nocturnal is supported?  i would really like to do that, but I think I'm going to have to re-locate to get the support.  I use the pureflow with a 60L batch.  That pretty much fills the container. it's supposed to last 72 hrs, but that includes the time it's actually "brewing" so it's more like 64 (which is plenty to use it up)

Well, I'd like to wish you good luck transitioning to nocturnal home dialysis.
Let me know how it goes!

[M3Riddler]

I started buttonholes and home hemo using Medisystems needles.  My supply ran out and the clinic says they can't get them for me, they have some kind of exclusive deal with JM.  But if I want to pay for them myself my doctor is willing to write the prescription.

#1 I've been told you can't order them unless you have a medical license.  So I guess the doctor's office has to order them?
#2 Why can't Medicare pay its customary compensation?  Wouldnt they be paying for any needles i use?

Again, bad medicine.  With the JM needles I have difficulty cannulating, which isn't good for my fistula, and my pressures run higher.

Anybody order their own needles and pay for them too?  Any info?

thank you!

Fearless, if you were using a particular brand and then the clinic changed, there is no reason why your nurse cannot order you the same needles that you were using. Does not matter if they have a new contract with a new company or not.  This happened to me. The center switched brands. I was on Medisystems.  They first tried telling me that I cannot use them anymore... I let them know that this is not true and they are responsible to provide me with any equipment that I was previously using if available.  Long story short, they ordered me needles from medisystems anytime I need them.   They ar required to get what is best for you.   I would take this to  your nephrologist.  If he is willing to write the script, there is also no reason why the center cannot order them and you Should Not be required to pay for them.
If worse cam to worse, I would just get the script and purchase my own casae....around 140-225 depeniding on size. You can get them through Henry Schein.
Fight for your rights!!!!

///M3Riddler

[fearless]

M3Riddler,
thanks very much.  I've learned just today that my doc is NOT on my side.  My old doc retired as I was starting hemo a year ago, and this doc really doesn't give a crap about me if it means anything that will reduce fresenius profits one tiny penny.  I'm fighting tooth and nail for better care.  Don't get me wrong, there are no violations.  But operating within the law and providing good care can be a world apart in dialysis.  I'm looking into changing clinics.  Any information to find out which ones offer home nocturnal?  Or even clinic nocturnal?  It looks like they're mostly in bigger cities and I'm a bit worried I might not be able to afford to live there.  But I have to find something better.
you are very kind

[Rerun]

This is "kind of" on topic.  My center ran out of the lidocaine shot and they are not getting any more.  They said there is a "national shortage".  So I got a rx from my Nephrologist and went to "WalMart" and got 5 vials for 56 cents.  I think they are cutting costs but they are sticking to the "National shortage" story.

[fearless]

Rerun, I don't even want to try to tell you all the crap I've been told.  It's all about putting me off, misleading me, out-and-out lies.  And at the core of it it's all about money for Fresenius.   Since Medicare started bundling payments, apparently the multi-millionaires don't want to lose a penny of profit even though the whole world is in austerity.  No, not them.  They must remain multi-millionaires and even become billionaires.

But what makes me the most angry, and the saddest too, is that my doctor must get some kind of positive feeling out of complying with Fresenius cut-backs.  My doctor's not a millionaire, so what's up?   She actually referred to me as "you people" one time (meaning patients)  I should have known then it was time to start looking for another doctor.  There are only 2 docs in this town, and she's the only one I can do home hemo through.  I don't want to move because I'm on the transplant list for a great hospital one hour from here and have been for over two years now.   It sucks.  For now I have to keep fighting with her while trying to still be "a good patient".  AAARRRRRGGGGGG!!!!!!!!

[amanda100wilson]

Fearless, remember if you move, you can transfer your accrued time frome one transplant unit to another. 

[fearless]

Hello Amanda my inspiration!

yes, i just transferred my wait time from chicago to indianapolis.  I had to go through all the evaluations again and I hate to have to do that again (finished just a few months ago)

But if nothing happens soon, I'm going to try to find a community with a good transplant center, AND good dialysis care.  You just never escape the second one forever I guess.
I think I'm in a region of the country with one of the shorter wait times, so there's that to consider too.

i've been away from the board for a while and I saw you weren't able to do nocturnal as you were hoping.  Have you since found a way to do that?
Always glad to "see" you Amanda!
take care 

[M3Riddler]

This is "kind of" on topic.  My center ran out of the lidocaine shot and they are not getting any more.  They said there is a "national shortage".  So I got a rx from my Nephrologist and went to "WalMart" and got 5 vials for 56 cents.  I think they are cutting costs but they are sticking to the "National shortage" story.

Rerun,
If there was a shortage, this country would be in trouble. Lidocain is very cheap to produce and is in abundant supply everywhere.  I believe I stated before, but the reason they dont like to use it is that they found that it scars the fistula.

At least they could have stated the real reason istead of making one up.... This would make me question what else they are telling you that is not correct?!!!!!!!

///M3R