Besides the message boards on Home Dialysis Central, we have an active Facebook discussion page, with 600+ members who learn from and support each other. Recently, a nurse (we'll call her Anonymous—but we Googled her and she is a real nurse) had an exchange with our members that still has me shaking my head, due to her out-and-out rudeness and refusal to acknowledge that she might not know everything, and dialysis consumers have expertise of their own. Her statements are in blue, below.
The whole thread is far too long to include. (NOTE: I changed the names of everyone who took part and their partners—these are not real names!). But, I was so proud of how articulate and professional our other members were—and so appalled at the lack of professionalism of this nurse, that I thought this exchange might be educational for other renal professionals. At the end of it, Anonymous deleted her posts and left our group.
Brenda (5 year home HD partner): Not sure if anyone will know the answer but it never hurts to ask. I just got Seth hooked up and am doing an experiment. His nurse wants him running at 450 and doc ok'd it even though I'd rather do it at 400. I got to wondering, if I run him at 400, does it change the blood volume processed? He's taking off the same amount of fluid as yesterday so I figured it'd be a good time to test it and compare the number. I'm thinking no but still curious. Trying to come up with reasons to convince doc to let him run slower.
ANONYMOUS: Thats a different mode of dialysis. Called Sled or CRRT.
Olive: Actually, slower, longer (overnight or 8-10 hour) runs are the best!
ANONYMOUS: The faster you run, the better the clearance of toxins. Hemodialysis Nurse.
Brenda: We've only been on NxStage for 5 months so correct me if I'm wrong. Lowering the flow increased his time so how does that affect clearance? Also, I could almost swear it's been said here that it's better to run slower. I know I've heard it's also better on the fistula to run slower. His nurse thinks everyone runs at least 450 and actually tried pushing for 500 but his fistula couldn't handle it.
ANONYMOUS: Running slower could cause clotting, slow dialysis is for patients where traditional dialysis (3-4hr txs) causes hemodynamically instability, headaches, nausea, vomiting, low blood pressure.
Olive: More toxins, especially middle molecules, are cleared better on extended dialysis according to Dr. Belding Scribner (father of dialysis) and colleagues. http://onlinelibrary.wiley.com/doi/10.1002/dat.20619/full
ANONYMOUS: Depends on your prescription, i would go with what the Dr. Ordered.
ANONYMOUS: You want the best clearance. Ask you MD.
Linda: I would do more research and not just assume the Dr. knows best. Our training center didn't want you running over 400 and most of the home patients ran at least 4x/week and usually 5 for at least 3.5hrs. Todd never had any issues with clotting.
Tim: In my case, they always told me that the pressures were the most important thing to watch. They gave me upper limits on my pressures and told me to run at whatever speed I wanted as long as I stayed below those numbers.
Nina: ANONYMOUS, Actually that is incorrect. Many on Home Dialysis use Extended Hemodialysis because it actually is more efficient, and takes more toxins out of the blood stream, including "middle molecules" such as phosphorus. SLED or CRRT are the terms for continuous dialysis for critically ill patients, typically in hospitals, not on home dialysis. Patients use Extended Home Hemo because some of the benefits are not needing to watch potassium, or phosphorous levels, except sometimes to supplement because they may become low, normal BP, etc. Again not because they can't tolerate it, but because it is a healthier method.
Linda: I would encourage you to get back to the vascular Dr. and let them know his instructions are not being followed! He is the one who constructed the fistula and knows how best to deal with it! This is a perfect example of one Dr. not listening to another Dr. and then a nurse pushing her ideas in. Bottom line, at the end of the day, you guys are the ones who are going to have to live through a fistula blow up, none of them. I know everyone is different but those pressure readings are way higher then Todd's ever ran. His venous hung around 170-185 and his arterial hung 140-150. Do some reading up on the accuracy of the Kt/V reading. There has been a lot of discussion on these groups as to how it is not a good way of measuring but they continue to use it. Keep researching and don't settle for just doing what "they think is best". Be your own best advocates and push for other options.
DeeAnn: ANONYMOUS, where are you getting your information? It goes against everything the most recent science and experts show.
ANONYMOUS: From research. I guess you know it all.
Krystal: @ANONYMOUS - I have to call you on what you said to DeeAnn, seeing as you were laying down the *rules* of dialysis, I feel DeeAnn asked you a valid question. I get that you are a nurse working with a lot of different types of people on dialysis, but share your experience, please don't lecture about the only way to do dialysis.
ANONYMOUS: I can see Krystal that we are not all professionals here. Why do you want to argue? Im speaking of my experience and training.
ANONYMOUS: According to this forum, you all know more than the doctors and nurses who perform more dialysis sessions than you. Maybe our training was and degrees are useless.
Krystal: @ANONMYOUS - yes, they are useless when you aren't listening to what PEOPLE dealing with dialysis are saying. That is why people share information, to learn. A good example is Gluten Intolerance or Celiacs, for the longest time a lot of doctors thought it all fell under IBS, or any number of symptoms but you now have more education, and research showing this is a genuine autoimmune reaction. And yes, I have had a number of *professionals* practice on me, some with knowledge and grace (who partnered up with me, knowing that working with patients gets better results), and I have have a number of professionals just doing a job. And if you don't want to hear other opinions, other than professionals, why are you here?
ANONYMOUS: You all are very eager to criticize. Do you have a degree in Nursing? have you dialyzed more than your family member? you are all very unprofessional and bullies.
Helen: ANONYMOUS, I, too, am a dialysis professional. I have managed home programs for 10 years. I am an expert on HHD and PD. Empowering patients is our goal, not dictating to them. I learn from my pts every day. My purpose is to guide them and teach them but I am NOT them. Please do not forget that WE work for THEM. It is not your fistula and you are not the one on dialysis. Seth and his wife have been doing this for 5 years and are more knowledgeable about what they are facing then we ever could be. It is our job as dialysis professionals to guide and advise, and to listen to their worries and concerns. Hopefully we teach them what they need to know to continue safely at home.
ANONYMOUS: Thx for the lecture Helen. Its not about a feeling, its about doing whats best for the paient, to get the most effective tx possible. Their are experts in dialysis and these people aint it!
Helen: It was not a lecture, and after 5 years they ARE the experts of their own dialysis.
ANONYMOUS: Then why are they asking questions? I tried to answer a question and everyone gets their panties in a wad.
Brenda: I asked because we are still new to NxStage and I don't know it all when it comes to THIS machine. Can't learn if I don't ask. However when it comes to him as a person, I do know it all and I know his access.
ANONYMOUS: Brenda and DeeAnn if you will read back posts you will see that is not what i said, I would appreciate you all not lamblasting me for you do not know me and you all are not professionals and only have experience with your or your family members dialysis treatments. Dont act as if YOU know everything and know what goes on in dialysis centers across the US. Grow up and shutup!
Teresa: ok, I tried not to say anything the first time you were rude ANONYMOUS but you are the only one that I see being rude. I did not see anyone else do that. We are just having a conversation. It is ok to have different opinions.
ANONYMOUS: You are rude now Teresa.
Teresa: lol I would expect you to say that. Have a fantastic day, ANONYMOUS!
ANONYMOUS: yes its ok to have different opinions but its not ok if ANONYMOUS has an opinion.
Teresa: ANONYMOUS, come on. You are just as entitiled to have an opinion as everyone else. You are a valuable member of this group.
ANONYMOUS: This forum has absolutely turned me against talking on these forums and im thankful and blessed that i work with ______ and not people like you.
Really?! I was shocked as I read ANONYMOUS' postings, which became progressively argumentative and defensive. It's easy to blame the anonymity of the web for giving ANONYMOUS "permission" to communicate so disrespectfully with patients, who were merely asking questions, and to professionals more experienced in treating home patients than her comments indicated she was. But amazingly, ANONYMOUS posted with her real name—unless she used a colleague's name! The "Golden Rule" says "do unto others as you would have them do unto you." Treating others with respect goes a long way in life—and in dialysis.