this will make me crazy

[cev]

Labs just came back, Neph decides husband needs iron - says make an appt at infusion center - I jump in - why - why not go to in-center dialyze and get iron - as he has done before. (why sit in infusion center 2-3 hrs and then home dialyzing 2.5 hr) He calls neph back, no response , he calls nurse (she is the BEST) and arrangements are made for in-center.  I go visit Mother while he goes to in-center.  His appt is 4:00   I get a call at 5:00 he is on his way home - they - the professionals (the buttonhole experts) can NOT stick him aghhhhhhhhhhhhhhhh.  He said they tried , blunts, sharps, new hole, nothing and his arm is swollen and hurts.  They said make another appt and "bring your wife"!  Now I have to deal with the mess they have made of his arm tomorrow, because he should not be off 2 days in a row and his iron is still low, making his HGB low so he feels crapy, whiny.  And since I am ranting, with the roller coaster ride they have his HGB on adjusting his procrit up, down up down because of the blackbox warnings and he needs to be under 13 but they bring him to 11.1 (he bearly functions under 12), under 13 is 12.9 right - I bring that up and now it is under 12 so what happens to 11.9 ?? why 11.1?  dropping from 12.6 to 11.1 in one month!!! making him miserable and me insane - ok I am done.

[jbeany]

I haven't needed iron since I started on NxStage.  Sounds to me like I should opt for the infusion center if I have to - at least it will be in an IV in the other arm.  Or better yet, jump up and down and scream until they finally agree to send the iron home with me.  I really wish Nxstage would start putting a standard mediport on the lines.  How dumb is it that most dialysis patients need IV meds and there's no good way to get them on a NxStage?  I'm getting my IV Hectorol at home - surely they could work out a way to get the iron at home too!

Hope you find a better solution soon, and that the iron will help stabilize his hemoglobin.

[del]

Hubby uses a fresenius machine at home for nocturnal home hemo and he does his own iron at home.  Whole lot more convenient!!!

[KR Cincy]

I just get a big syinge of venifer (iron) during my once-a-month center visit and it's fine. They hit my fistula with a little butterfly needle...mix the venifer with some saline and push it in...no fuss no muss. For some reason around here, no one can administer iron except rn's which is why we can't do it at home, but this is working fine.

[petey]

oh, goodness, cev!  what an awful experience.  When Marvin and I were training for home hemo, his nurse told me NOT to let ANYONE touch the buttonholes after they were established except me (I'm his sticker).  "These buttonholes are yours," the nurse said to me.  "Protect them with your life if you have to."  In December, Marvin had to be hospitalized at Duke (Durham, NC) for a pacemaker placement, and since he was hospitalized for almost two weeks, he had to have his treatments there.  I told his neph at Duke that I wanted to continue to do the cannulation, and the neph said okay and put it in his chart.  The first treatment he had in the hospital, the dialysis unit sent a machine to his room (Marvin was in C-ICU and they don't take these patients off the unit).  The male nurse who came to give Marvin his treatment said he would cannulate.  "OH, no, you won't," I said.  "Check his chart.  It's doctor's orders that I stick."  The nurse said he was the RN, he did this every day, and he would stick Marvin.  I stood between him and Marvin's bed and told him that he may be an RN and he may stick people every day, but these were MY buttonholes -- he had never stuck MARVIN before, and he wasn't going to!  I absolutely refused to let him stick Marvin (I think I got a little loud and a little demanding).  I called for Marvin's nurse, and requested that she call the dialysis unit's supervisor and the neph.  In ten minutes' time, I had the dialysis supervisor, the neph, and the hospital's Director of Operations in Marvin's room.

At first, the dialysis supervisor sided with the dialysis nurse.  She said the hospital had never had a "non medical professional" cannulate on HER unit (she's been the supervisor for 10 years, and she knew Marvin because he had been hospitalized many, many times there).  The neph told the dialysis supervisor that I would cannulate Marvin and pull his needles.  He also said that Marvin and I would determine his dry weight, his blood flow rate, and his UF rate.  (I could have kissed the neph -- obviously, he knows I own flying monkeys!  )  The dialysis supervisor said, "We've never done anything like this here."  The neph said, "There's a first time for everything.  With home hemo growing in popularity, we're going to have more patients like Marvin who either self-cannulate or have a partner cannulate.  They know his body, his access, and his dialysis procedure better than we do."  The dialysis supervisor asked the neph to specifically write in Marvin's chart that he would be responsible.

The whole time Marvin was hospitalized, I cannulated and pulled the needles (because pulling out at the wrong angle can damage the track -- even with dulls).  After Marvin came out of C-ICU, I would go with him to the dialysis unit to cannulate, set his dry weight, his UF, his blood flow rate, etc.  Then, I would go back and pull the needles.  They had never allowed a "visitor" in the in-hospital unit before.  After that first day, I didn't have any problems from the nurses.  Most of them were very interested in home hemo and buttonholes.

When Marvin was discharged from the hospital, he had to go back in-center for his treatments temporarily because he had to have IV antibiotics (NxStage SHOULD make adjustments to allow for this on the machine!!!!!).  His local neph (not the Duke one) wrote an order that I was to cannulate and pull the needles.  His clinic (the one he went to for the 12 1/2 years before we went on home hemo) had never had a non-employee stick, either.  They were very, very good to me and didn't have a problem with my involvement in his treatments.  This clinic had never seen a buttonhole access, and the first day, I had two nurses and four techs watch me cannulate -- talk about being nervous!  Thank God, it was a perfect stick that day.

cev -- those are YOUR buttonholes!  protect them with your life!  don't let anyone else touch your husband's buttonholes!  get ugly if you have to!

[del]

Sounds like the way I would react and hubby would be right there saying it was his arm and he was the one to choose who needled it!!    I would be loud too!!!  Nobody know the buttonholes unless they do them all the time. 

[cev]

Thanks guys, and Marvin is soooooooo lucky.  I thought I was protective of husband but not like you are.  Our in-center is ok with me sticking him there, just I had to be away that day so it seemed perfect setup.  Oh well it will get better.  Our neph, medical center are super cautious, but someday we will be able to do iron and labs at home.

[alrightstill]

I hate to sound ignorant, being that I'm seasoned on NXSTAGE since 05 - but isn't that what the port on the dialyzer is for -- to administer IV meds? 

Over the 3 years I've given myself epo, hectoral, antibiotics (when/if needed), carnitore and yes, even venofer (which we had to fight REALLY hard for..)! 

[KR Cincy]

We were told to no longer administer Epo through the port...it goes right into the fistula needle tube before we finish my connections. When we were in training, we could dose the venefer through the port, but that's one med they won't let us do at home, so I just get ironed up at my monthly center visit.

[jbeany]

The port was not intended for IV meds.  The tubing should come with an access on it, just like the ones we use in-center.

[Earlinda]

Wow!!  I feel blessed as I give myself venofer at home twice monthly.

Earlinda