Dialysis in the hospital help?!

[Angiepkd]

Hi!  I am scheduled for a double nephrectomy, liver cyst ablation and hernia repair on June 28th.  It is a rather big surgery and I am expected to be in the hospital for 5 to 7 days.  I am not nervous about the procedure, but am worried about dialysis in the hospital.  I asked about self-cannulating at my pre-op appointment and was told they would not allow it.  My plan is to demand that I be allowed to do my own needles and hope that they back down.  That plan will only work if I am coherent enough to even do it.  Anyone fought that battle and won?  I am going to have my husband bring my blunts with him.  I am also wondering what type of machine they will have me use, as I am pretty sure it won't be NxStage.  Are the flow rates different?  How will using a different machine affect my fistula?  I really don't want to have any access issues caused by using a different system.  I started on NxStage so I have no experience with in-center D.  I was told the hospital will only do dialysis 3 times per week, so that will be a big change for me.  Having no kidneys will mean I will have to remove all my fluid through D, so 3 times a week is going to be rough for me.  Any experience or advice would be greatly appreciated!  Just trying to put my mind at ease (easier said than done)!  Thanks for the help!

[cattlekid]

I self-cannulated every time I was in the hospital while I was on dialysis with NxStage.  Each time, I told my nurse who was setting up the appointments that under no circumstances would anyone but myself be allowed to cannulate my fistula.  I guess I was good at giving them the evil eye while I made these statements because there never was an issue.  I also think it helped that my personal nephrologist was always my attending nephrologist so he was always there to back me up if need be. 

I think you are very smart to bring your own needles.  I never remembered to do so and always had to cannulate with 14g blunts with no steri picks.  It was like picking scabs off with a brick and cannulating with a garden hose. 

Depending on who covers the hospital will determine what machine you use.  Fresneius covers our local hospital so that's whose machine I had to use.  I had done dialysis for nine months in center prior to going home, so I was used to their big honking machines.  Your nephrologist should be able to write the orders for the parameters he or she wants you to use.  I would definitely discuss it with your neph prior to the first scheduled treatment.  I think the only thing you won't probably be able to get away from is the 3x per week treatments. 

Good luck!

[PatDowns]

Cattlekid has given you excellent advice.  Have your nephrologist be your advocate, and hold to your guns on the self cannulation issue.  Absolutely take your blunts with you!  Also, get in a good treatment the night before going into the hospital.  This way, you might be able to go about a day and a half after surgery before needing dialysis, and be more coherent/in less pain when sticking yourself.  If possible, have your husband with you when getting treatment.  Oh, one other thing - make sure there are signs put up on the wall behind your bed and on the door to your room - DO NOT TAKE BP/BLOOD DRAWS IN (RIGHT/LEFT) ARM!! - so your access isn't screwed up.

Good luck with your surgeries.  You're one tough lady having all this done at one time.

[Angiepkd]

Thanks for the replies! I am practicing my evil eye lol.  My neph doesn't have privileges at the hospital where I am having my surgery.  Unfortunately, I have to go to this hospital because of some specialized laparoscopic equipment (just my luck).  I have an appt. with my neph tomorrow, and am going to make sure he sets up my dialysis parameters before the surgery.  There are several docs who do have privileges in his practice.  Hoping this will save me from having issues.  I am going to dialyze the night before, so I can technically take the day of and the day after surgery off.  I will make my hubby responsible for getting the no BP/blood work sign up and make sure he has those blunts.  I don't want to do anything with 14 gauge needles!  Ouch!  So many things need to come together to make this surgery go smoothly, it will be a miracle if something doesn't get screwed up. Just hoping it is something minor!  Thanks again!

[bevvy5]

When Greg has had to go to a centre (while on vacation), I did his needles in our condo, flushed them with saline, taped them well and then drove him to dialysis.  If you have a bit of notice before you're to leave for Hemo, put them in before you get to the unit.  I honestly can't imagine a nurse taking them out to reinsert them somewhere else. 

And definitely have your husband there if possible for support.  It may be all you can do to deal with recovery, let him fight some battles for you.

I hope all goes well.

[boswife]

wow Bevvy5, good thinking!! And,, I always am aloud to do Bo's needles when he's in hospital.  I was kind of surprised, but it was no problem.  Im surprised that they are so against it.  I will say that even the dialysis section was surprised and had not faced someone else doing needles in their area, but they thought it was really cool..  Hope you get some answers so you can get it off your mind.  Best of luck on all..

[rocker]

Needles - yes, hubby was allowed to self-cannulate in the hospital when he felt up to it.  We've been in hospitals with a unit, and hospitals without.  Hospitals without a unit generally have the traveling dialysis nurse come with a machine.  Once I have explained to whatever dialysis people that we do home hemo and I am his partner, I have always been treated with great respect and they listen to what I tell them about treatment parameters. I always make it a point to treat them with respect as well.  ("You know more about dialysis, I know more about this patient.")

Don't go in expecting a battle - policy is one thing, but the actual carers are usually far more flexible once they understand that you know what you're doing.  Tell them conversationally that you'd prefer to stick yourself.  I know that for a couple days post-surgery, hubby was just as happy to let them stick.

We bring our own blunts, only one unit has had them available.

The 3x/week thing is a b*tch, especially when they're loading you with fluid.  Last time he was in we requested an additional session before discharge because he was so heavy.  They said his labs were good and there was no fluid in his lungs so he didn't "need" it, but they'd see what they could do. We emphasized that he was very uncomfortable.  They did end up giving him the extra session. When he returned from the unit, the floor nurses were like "Wow, you look so much thinner, I guess you really did need that session." So ask if you feel you need it, it can't hurt.

[Simon Dog]

I was in the hospital leaving as a HD patient (went into the hiospital as PD patient).   The care was decent, but there was NO attention to the gap between in-hospital and outpatient treatments.

First, they wanted to discharge me on a Saturday and have my first in-center D on a Tuesday (leaving a three day gap between Friday and Tuesday treatment).  I objected to the gap so they discharged me on a Monday and the social worker came by with "your first treatment is Thursday".  Great - a three day gap right after a three day gap.   I told her I wanted to talk to the neph - she left and came back 10 minutes later with "your first treatment is Tuesday".  At least I now go to in-home treatment so I can manage my own gaps.

[obsidianom]

Are you going to do Nxstage at home now? Are you trained yet? What is your access type?

[Simon Dog]

Are you going to do Nxstage at home now? Are you trained yet? What is your access type?

Not sure which of the posters you were asking.   I am doing BabyK@home, left radiocephalic fistula, buttonhole, 15ga blunts.   Completed training (3 weeks going every day) a bit over a month ago; currently on a eod 4hour schedule; looking forward to getting the go-ahead to go nocturnal.

I competently self canulate, but am always scared when doing so.    That's probably not bad since being a bit scared makes me pay very careful attention to what I am doing.