Home Hemodialysis: It Gets Easier!

Nowadays home hemodialysis (HHD) is pretty much a routine.  We don’t generally have to resort to the manuals, and very rarely have to call NxStage for advice or help.  We’ve been doing it for about 9 months now.  It’s not mindless routine, though.  Sometimes you could SWEAR you opened that clamp, then you hear those hideous alarm beeps and see those dreaded flashing red lights...  It’s generally something easily corrected.  It wasn’t that way in the beginning.

At the time we started training (I’m the patient, my wife is my care partner), our center was undergoing a lot of staff turnover.  The person teaching us was experienced with in-center dialysis but not home dialysis and the NxStage cycler we were using.  When we asked a question, as often as not, we heard, “I’m not sure about that.  Let me find out.”  And, to her credit, she would find out and tell us.  The problem was they were understaffed due to COVID.  Several times, we would be told to watch some videos while taking a treatment.  Then, in the last half hour of the treatment, a live person would come in to do some teaching.  By that time, we were exhausted and anxious and only wanted to get loose and go home.

My wife and I are both long time nurses with wide experience.  Even though I’d been an RN for 45 years, I’d never heard of home dialysis.  When my nephrologist said the dreaded word “dialysis” to me it meant driving 55 miles 3 times a week.  We both say that learning the machine and the procedures connected with HHD was the hardest thing we have ever done.  It’s a huge commitment on both our parts.

For most of my adult life, I took 2 or 3 different meds daily.  Now it’s closer to 30.  No wonder I don’t have much appetite!  I’m full of pills!

Our first home treatments made us both very anxious.  Trying to follow the manual’s instructions was especially nerve-wracking.  The parts and tubes were labelled with long, non-intuitive, too often repeated names.  That was very confusing.  We made our own “cheat sheets” with names like the orange line (the color referring to the clamps) of the blue line.  The triple tip green line was the chicken foot.  We listed each step in simple language.  This made things go MUCH smoother.

Another thing we do is that we pray before each treatment.  I’m not pushing my beliefs on anybody.  You might prefer to take a few minutes of relaxed meditation or centering or deep breathing before starting—whatever makes you feel calm and able to concentrate with anxiety.

We also came to see that there was help available.  NxStage tech support has always come through for us with good, practical, usable real-time advice.

Yes, it was stressful and difficult in the beginning.  It does get better, though.  I’m feeling better.  My most troublesome persistent symptom is weakness.  I have to use a walker to get around, but, at least, I DO get around.  A roll around stool lets me be able to cook and help in the kitchen.  

We have had to make many adjustments in our actions and in our relationship with each other.  It has been worth it.  It gets better.