I read many posts on this site about HHD (Home hemodialysis). The other posts are about traditional peritoneal dialysis with dextrose based solutions and cycler treatments.
This leads me to start a topic asking a few questions:
How many of you on home hemodialysis/peritoneal dialysis are on diuretics to help you continue to rely on your own kidneys to remove fluid? (The more urine you produce, the LESS dialysis you need).
How many of those on home hemodialysis have nursing staff collecting your 24 hour urine and adding it to your monthly KT/V labs to help you REDUCE your time on dialysis?
How many on HHD are on 2-3 days a week with urine output >300cc?
How many PD patients are using sugar free dialysis products?
How many people feel that there kidney doctor/nurse are continually catering to you or your patients dialysis treatment to their specific needs and accessing your quality of life? How often is your dialysis increased in response to a problem?
One challenge that we have experienced at Premier Dialysis is that patients believe all doctors are created equal, that if other options were available “‘my doctor would tell me about it.”
If you are on any home dialysis without medications to help you urinate, then your team isn’t following current guidelines.
If you’re on home hemo and urinate and you don’t submit it to your home nurse, they aren’t affording you the opportunity to do less dialysis. Remember dialysis is an industry driven financially to have you do MORE treatments not less.
If your BUN is up and they didn’t verify whether you are dehydrated and simply increase dialysis, then perhaps they don’t have all the knowledge.
This post today is to encourage you to do something we’ve been told is completely inappropriate; challenge your nephrologist and nurses decisions. Ask them when the last time they read a study about current guidelines? Are they just doing what they have always done? Ask them the last time they updated their thought process related to a patients treatment. Ask them their experience with extraneal (sugar free) PD solution. Ask them if when they update your prescription, was their first thought whether or not THEY would want to do what they are asking you to do? Or was this just the quickest way to achieve an outcome they want to see on your lab sheet without that consideration.
Everyone on this site is seeking information, comfort, and support when dealing with this illness.
I don’t know any of you personally. One thing I do know is that patients are being over-dialyzed to achieve a status quo that was created 40 years ago.
Push your clinical team to think outside the box and create for you a treatment that is catered to YOUR body and YOUR needs.