Each unit follows different protocols

SURVIVAL TIP: When you plan to visit another dialysis clinic, call to verify seat availability. Then call your scheduling coordinator or main scheduling department. The clinic coordinator (usually the administrative assistant) will let you know if your request was approved and the time of your first appointment. The clinic coordinator generally reviews paperwork with you at the facility.

            While all clinics must follow the same state and federal laws, every unit is different. When you know more about the unit you will visit, you can mentally prepare.

Patients who visit a clinic are called transients. That took me a while to accept. After all, I have a home and a permanent address. I’m not a hobo, which is what “transient” means to me. But jargon is part of dialysis, and we can’t take the terms personally.

One location used hospital beds with no sheets or pillows because they offer a nocturnal (overnight) shift. That would have been helpful to know when I packed for the trip because when I was on the nocturnal shift early in my treatment, the clinic provided sheets. Some other differences I’ve noticed are below.

  • While the printed document the clinic coordinator gives you will provide an arrival time, those times are not always confirmed with the clinic. So call the clinic shortly after first shift begins on the day you are seeking treatment (or the day before if you are going to first shift) to determine your arrival time. You should get there early for your first appointment to allow time for paperwork. My experience is that the scheduling department provides a “best guess” that might not be accurate. During that call, also ask if you should bring a pillow, blanket, headphones, etc., and if eating in the unit is permitted.
  • Clinics use a range of thermometers. Some units use digital probes with plastic covers. Others use disposable paper thermometers that reveal the temperature through colored dots. One clinic I visited uses thermometers that read the temperature of the forehead without making contact. Some units expect patients to take their own temperatures, while other units prohibit patients touching the thermometer.
  • I’ve had staff use gauze from individual packages and from piles of cotton squares.
  • Availability of televisions and channels vary. Most units have individual televisions for each patient, but some share a large television among several and individual headphones. The quality of the TVs also differs, even within the same unit. Some are larger and the buttons press easily. Others flicker and turn off or don’t work at all. My favorites are the ones that turn OFF when you are trying to turn the volume UP! In our unit, all TVs don’t get the same channels, much less the channel variety that some other clinics offer. Some facilities require patients to use headphones with televisions, but all do not. You always do well to bring something to occupy yourself, whether a book, a phone, or a tablet because sometimes the TV and internet connection fails. While most units provide free, albeit slow, wi-fi, I am not aware of any facility that allows Netflix. Filters block “obscene” websites, as well. I was recently told that you can freely view YouTube and Hulu, but I haven’t tried either.
  • Most facilities use hospital recliners, but some use hospital beds. I have heard of facilities that have heated recliners. Oh, how nice that would be!
  • Facilities start their first, second and third shifts at different times. Most run Monday, Wednesday, and Friday for one group of patients. Then on Tuesday, Thursday, and Saturday another group comes in. Some nocturnal shifts run Sunday, Tuesday and Thursday. Not all units offer nocturnal shifts, just as all units do not offer Tuesday, Thursday, and Saturday dialysis or three shifts.
Did YOU KNOW:  Dialysis units promote a full life. While you can travel and still get dialysis, check with Medicare and your insurance company(s) to see if dialysis outside of your unit is covered by your plans. Most dialysis within the U.S. is covered, but dialysis abroad might not be covered.  One opportunity Fresenius promotes is Dialysis at Sea (dialysisatsea.com), but the FAQ section states that insurance does not cover dialysis while on the ship. Reimbursement might be possible, however.
  •  Units can differ because the medical director for the unit or the medical practice that oversees a unit or units dictates protocols.
  • Some facilities pull two needles at once, while others pull only one at a time, citing clotting concerns.
  • Rinseback volumes (the amount of saline pushed through your access to force blood from the machines and into your body when treatment is finished) vary from clinic to clinic. At my unit, rinseback is 0.5 kg.
  • When determining your “pull”, or how much fluid you need to remove because you don’t make urine adequately or at all, your dialysis prescription might or might not call for rinseback. Because not all clinics use the same amounts for rinseback, your rinseback number is important when determining how much fluid you want to pull.
  • Different facilities pull varying amounts based on protocols. Some don’t allow a patient to pull more than 0.5 kg. Others allow 0.6 kg pulls. I have heard of clinics where the medical director requires the maximum rate offered by the dialysis machine. Pulling too much or too fast can lead to cramping or symptoms of low blood pressure, including passing out, difficulty breathing, and vomiting. Be aware of this when visiting another facility. Let a tech or nurse know immediately if you notice any of these symptoms, as well as unfamiliar feelings.
  • Some units allow techs to do everything but administer meds and listen to the lungs and heart while others require nurses to administer medicines, do all work with patients who have catheters and fulfill other responsibilities.

We all experience different procedures, even between techs in our own units, but understanding differences and asking what to expect is helpful in keeping your expectations reasonable while traveling. Remember, you are not alone. None of knows everything, and most people are willing to help and answer your questions.

If you or someone you care about is facing dialysis, share your experiences and concerns. Dialysisgal.com is a forum for learning and inspiration where we can ask questions and be honest with others in the same situation. What are your experiences and challenges with dialysis?

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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