Wednesday, July 18, 2012

They may not tell you

They may not tell you that the machine may alarm.... every night.... forever.  When hubby first started peritoneal dialysis the machine alarmed and alarmed and alarmed.  After several appointments and a scan of his peritoneal catheter using dye, they decided that the slow drains were due to the knotting of the catheter in his lower peritoneal cavity.  After the procedure to correct that issue, we thought we were good.  Sadly we weren't.  It did stop the leaking, but the alarming and slow drains continued.  We tried adding heparin to the bags and at times it seemed to help, but there was still alarming.  Hubby has changed positions and tried other suggestions, but it still alarms.  Some nights we are blessed and it only alarms once, but other nights it seems to be constantly going off.

It wouldn't change our decision to do peritoneal dialysis, but it is something I think people should know.  The machine will alarm... it happens... you aren't alone, but we are only one family going through this, so maybe most don't have alarming... that would be interesting to know.

Recently hubby mentioned the alarming to his dialysis nurse and she pretty basically said, it just might be the way it is for him.  I can't complain, the machine keeps him alive!

Even though alarming is normal for us, please let your nurse or doctor know if you have issues with alarming, it could be something more serious that needs their attention!

1 comment:

  1. When my husband started on PD, he had few alarms the first couple of weeks. Then, the alarm went off multiple times with every cycle. On the nights that I was able to sleep more than 1:15 hours a night, I had dreams of LOW DRAIN VOLUME flashing across the display! Thankfully, after his latest surgery to adjust his catheter, we hardly get any alarms. He occasionally gets some fibrin suck, and once or twice I forgot to open one of the supply lines, but we have been fortunate that the alarms have been drastically reduced. I keep a log (actually an Excel spreadsheet) of all my husbands PD stats, including alarms. I note the time and day that it happened, and it has made things simpler to explain to the PD nurse and doctors.

    My husband and I are relatively new to this whole dialysis thing. He lost kidney function in August, and was on in-center hemodialysis until we decided on PD. He did PD for a little over a month, then had the second surgery, went back to hemo, and now has been back on PD for almost 3 months. I just found your blog, and it seems like we are going through a lot of the same stuff. That first dialysis order? Insane! I have a pretty neat system now for dealing with it. I keep 7 boxes of green and yellow (what he uses mostly), 4 red, and 4 purple, (my husband is on 3 bags, so purple is every night) in our room along with 7 cassettes, and a 5 drawer organizer in our room. The rest goes into our office, and I just replenish as needed. The organizer I purchased was the best decision I have made! In my drawers I have:
    Drawer 1: Machine Manual and holder for his Pro-Card.
    Drawer 2: Mini-caps only
    Drawer 3: 3 narrow baskets: 1 has clamps, 1 has alcohol wipes, 1 has emergency glucose pills. I also keep his thermometer here with the wipes.
    Drawer 4: Tape, bandages, and his cream for his exit site care.
    Drawer 5: Face masks, gloves, drain lines, and index cards. I use the index cards to record his stats and then transfer them to an Excel spreadsheet once a week.

    I hope that helps some. Sorry for the long comment! I'll keep reading as long as you keep writing.

    Jamie Doom