Views from the Chair: The Perils of Being a Home Hemodialysis “Unicorn”
Just a few weeks ago, Henning Sondergaard shared his helpful tips (https://www.homedialysis.org/news-and-research/blog/268-keeping-your-autonomy-in-the-hospital) for maintaining personal autonomy while in the hospital. Beyond that, we’ve had discussions going back years in the Home Dialysis Central Facebook group (now almost 4,000 members!) about why most ER and hospital staff have never heard of home HD—and how that affects safety and medical care. What follows are some common themes and some strategies people have used to help cope with them.
You Mean Peritoneal Dialysis, Right?
A repeated frustration is feeling like “a unicorn” when ER and hospital staff don’t believe home HD exists:
“Every time I tell any medical professional that I do dialysis at home, their answer is, ‘Oh, PD?’”
“We usually have to show them pics on our phone—otherwise they keep ‘correcting’ us to PD”.
When I got to the ER and tell them I am on home HD, most of the time they assume PD. My fistula isn’t noticeable. Even had them try to tell me I am on PD. Had a doctor or two ask me how that works and if I cannulate myself. One ICU doctor asked me where my fistula was; he had already been told. He glanced at my arm and then assumed he had been misinformed and asked if he could look at my dialysis catheter. Dude, I don’t have a catheter, my fistula is in my upper arm. I pointed and he said, ‘No, your fistula.’ No kidding, dude. He finally listened and felt for a thrill.”
Some have found that after explaining about home HD they usually get respect from medical professionals. However, in some cases, when staff were informed, they were “horrified,” and became belligerent or even verbally abusive (“Ranting on cleanliness & procedures in case of an emergency and what not,” insisting, “I think that’s dangerous.”) In a stunning demonstration of solipsism, one doctor told a care partner she was mistaken—the patient must be on PD to dialyze at home. If the doctor didn’t know about home HD, there clearly could be no such thing.
Luckily, many folks were able to keep a sense of humor about their encounters:
“My favorite: ‘Are you allowed to do that? Is that legal?’ Me: No, I do it behind my doctor’s back and they don’t notice in-center that he’s missing.”
“I was asked once how I got the needles in. Uhmmmm I put them in? I honestly didn’t know how to answer.”
“’Did they train you?’ No…I woke up one day and said, ‘Let me try this…’”
“’You actually stick yourself? With a needle?’ No, a safety pin. Come on, people!”
Unfortunately, ER and hospital visits are risky under the best of circumstances, and home dialyzors are often not at their best (or most humorous) when they are ill, in pain, or concerned about an as-yet undiagnosed health problem. Ideally, ER and hospital staff would receive education about the needs of home dialyzors, but in the real world it is far more likely that those on dialysis will need to be prepared to educate the healthcare staff they encounter. Our article about How to Protect Yourself in the Hospital (https://www.homedialysis.org/life-at-home/articles/how-to-protect-yourself-in-the-hospital) is a resource to offer.
Prescription Shortcuts and Treatment Errors
Lack of clinician knowledge about hemodialysis processes at all—let alone home HD specifically—can and has led to safety concerns about access care and vein protection as well as not getting the prescribed dose of hemodialysis:
“The other day in urgent care, the nurse started wrapping the cuff on the fistula arm, and we both yelled ‘NO!’ I think we scared her!”
“I had 6 weeks of in hospital dialysis, every other day, 3 1/2 hours and could only remove 1k each treatment—despite getting IV fluids. I didn't go overboard. I have always had good fluid management. Got home Friday and resumed my nocturnal HD on Saturday: removed 4 kilos. Sunday, 4 kilos. Today I will again remove 4 kilos. And I would take the gamble that on Thursday, I will be removing 4 kilos. You do the math… In 22 years, I have NEVER been overloaded—and it will never happen again!”
“Every time my hubby ends up in the hospital, he comes home in fluid overload. Never fails. Usually takes me about 2 weeks to get him back to his normal weight.”
“Many times a nurse has tried to put a blood pressure cuff on my left arm, where my fistula is located. I did not get all my meds, and was given one phosphate binder two times a day. They never gave me my BP pill or my Hectorol…”
Preparing to Prevent Perils
Strategies employed by home dialyzors and care partners to avoid problems with unknown clinicians largely focused on educating staff—and preparing before a visit:
Show and tell:
“All the nurses gathered around to watch me self-cannulate. Never seen it before. I was the first home HD patient they had seen.”
“I had to self-cannulate when I was in the hospital, because I didn’t want them messing up my fistula. They’d never seen anyone do it before. I felt like a rock star!”
“I can’t get over the fact that health professionals refer to it (fistula) as a ‘shunt.’ One doctor even got quite antsy when I said that this term is no longer used, that it is an old term for a different type of access.”
“I always took NxStage trifold brochures with me to the ER. I explained to nurses and doctors (who wanted to hear about home HD) and handed them a brochure so they had something tangible to remember to look it up if interested. Call NxStage customer service or marketing for brochures if you’re interested in them.”
“I always find myself educating ER staff about something. Besides ESRD, I have other health conditions and when I’m in a flare up it’s normally a hospital visit at least once a week. After a year and a half or so, they stopped trying to tell me what was going on and just started asking me and running it past the nephrologist. I can normally tell them what tests to run and what they should expect the numbers to be.”
It is not always possible to avoid ER or hospital visits, nor is it likely to have staff on hand who are familiar with home HD—or even any HD. Part of preparing dialyzors to care for themselves at home is to equip them to educate and collaborate with new clinicians (and to keep a sense of humor when possible). Help them think ahead to protect themselves and their accesses and advocate to get their prescribed medications, meal plans, and treatments.