Views from the Chair: Home HD With No Partner
Recently, an ASN forum participant asked about patients doing home HD without a partner. Since the discussion included only nephrologists, I thought it would help to inject some information from the real experts: self-dialyzors. Many are quoted below so you can see their views on the independence, self-esteem, and freedom this option provides. This discussion is especially timely during the week of Independence Day—the KevinMD blog site today notes that “every medical student needs to hear patient and caregiver stories,” (I would add practicing clinicians to this list), and the JAMA Network has, just this week, proposed a research agenda for communication between health care professionals and patients living with serious illness. So, please consider this post a window into the world of people in the US and around the world who are living as fully as they can with kidneys that don’t work.
It is true that in most other countries the care partner requirement is long gone. All the European countries except maybe Germany have no such rules. In fact, when I started, there were concerns that I couldn't dialyze myself because I was a wheelchair user (typical ableist prejudice) and I was told if I wasn't able to do it myself I would have to go in-center. I think when two countries can have mutually exclusive rules they must both be wrong. (Author note: CMS officials I met with last December were shocked to find out that the U.S. does NOT, in fact, have the best dialysis outcomes in the world—far from it.)
I started on PD for 4 years, APD for 2. Having done PD 13 years before, I couldn't do it for very long, as the lining of my peritoneum thickened and made it ineffective. I then went in-unit for just under a year. Frustrations at my sessions finishing and waiting for ages to be taken off made me learn to take myself off. From there, I learned to line and prime the machine and to needle. As soon as I was completely self caring I arranged for a machine at home. As I was working full time and a single mum, this made my life so much better. More time with my daughter, less time waiting around for transport, bed before midnight, etc. I always have my phone to call for help. I have a key box outside so emergency services can access my home at any time. To go back to in-unit would be devastating. It's not just about physical care , it's about mental health care too. Solo dialysis can give you back freedom and control over your health. I don't think it would be long before I fell into depression if I had to go back to hospital. It would be impractical for me to have company every other evening which is what I currently do.
I keep an emergency cart at my chairside with everything I need for an emergency in reach. During treatment I keep both a cell phone and my land line phone within easy reach so I can call for help if needed. I don't do treatment if my blood pressure is low (I tend to run high) even if I'm asymptomatic. I don't treat if I'm overly tired or not feeling well just because I'm alone and don't want to be on the machine if I'm not feeling my best. I can easily adjust my schedule so I get all my treatments in, but not when I'm not at my best. I text one brother each day before I get on. I also set up a delayed text set to go out about an hour after I should be done asking him to check on me if he gets that text. Then I delete it when I'm safely off treatment.
I’m more at risk driving to and from treatment—20 miles each way over often treacherous roads during the winter (and today massive flooding in the area)—than I am dialyzing alone. I do recognize the risks, up to and including death.
I think caregiver burnout happens when too much is expected from the caregiver. I’ve been on HD for 12.5 years, and home HD for 11 of those. I set up, cannulate, monitor and manage treatment, on my own. In my opinion, the key to doing dialysis treatments without a care partner, is being well prepared, organized, and diligent in not cutting corners. It becomes easier over time, as you become very in tune with your body therefor avoiding many symptoms that may otherwise be experienced. It is definitely a huge responsibility, but one with great reward and freedom. I am married with a pre-teen, but other then coming to say an occasional hello, every one is happily off doing their own thing . I wouldn't want it any other way! Also, doing my own home HD allows my husband to travel for work without worry. With proper education/information, I feel that we should all be entitled to make the choice, risk and all. There are a great many things that I am more afraid of doing then dialysis alone! I think that riding motorcycles is dangerous . Life is about choices.
I’m solo HD nocturnal, home trained in New Zealand. My clinic set no time limit for training, encouraged questions and insisted that in making mistakes I’d broaden my knowledge and hone skills. In-clinic training (4 sessions per week) usually has the trainee competent within 8 weeks. I’m a slow learner and required 12, under no pressure. I’ve now been at home since last August, changed to kinder 17G sharps (laddering:200 Qb). Sure there’ve been some dramas, but the procedure for “early come-off” is simple and one approaches the procedure wiser on another day.
I've been on dialysis for 7.5 years and went straight to home hemo and do it solo. It was never a question for me on whether I could or not. I just informed the nurses they would just be training me and that my roommate would come in and sign whatever papers. My nephrologist was the one who encouraged me to do home hemo. I pushed for nocturnal 3 months after I started and have been at that ever since. I've had some issues but nothing that I couldn't take care of myself. When my fistula has had issues I continued doing nocturnal with a catheter for the few months that it took for them to get it working again. I travel quite frequently and always used to always travel alone until I recently got engaged and now we travel together but other then helping me lug my stuff he doesn't help with my treatments! We are gearing up to fly to Australia in a couple weeks. With roughly 600lbs of supplies!
I have been on home hemo for 10 years without an issue. Never had to call 911. I have never had an emergency and rarely do I have a situation needing assistance. Like manual rinse back. I have had to do that exactly twice in 10 years. My husband, and "care partner" does nothing. He helps with moving boxes and rotating stock. That's it. I do everything else. He is active duty Navy and often is gone from 3 days to 6 month deployments. I am immune compromised so I avoid the clinic to stay infection free. When he leaves for short periods, less that a month, I have friends come sit with me. It's an informed risk to dialysis alone. As an adult responsible for my medical care, conditions and treatments. I understand the risks. It's a risk I'm willing to take to get optimal dialysis and to dialyze in my home where my health isn't put in jeopardy. Let me live. Let me dialyze at home. Alone if I choose. What's the point of keeping me alive if I can't live; not just exist?
I'm in the U.K. When I trained 8 years ago it had to be done along with a partner and under no circumstances were you to dialyse alone. The question is how could they enforce this? Simple. They can't. We need safety, knowledge, and experience...not rules dreamed up by people who have never had a day’s renal failure. I frequently dialyse alone, at home or in my dialysis van on HD. I always dialyse nocturnally. If someone is a responsible adult who completes proper training satisfactorily and is willing and able to take responsibility for their own treatment why should anyone stand in their way?
I do treatments by myself. I technically have a care partner, but she wouldn't know how to do a single thing. I just needed her for the clinic to train me. But I do everything by myself. The only time it was a slight problem was at first when I had a few accidents and bled all over the place. But for the last 5 or 6 years, I have done everything on my own. I can't imagine having to have help with anything, I would lose the last bit of independence that I have.
I need to use dialysis to sustain my life - I have no urine output
Using dialysis to sustain life is burdensome and it is not enough that a treatment regime works for a week or a year - I think it needs to be a treatment that a person can live with over decades.
- The evidence to support any one approach to dialysis is lacking.
I've been self-dialyzing since 2004 on short daily for a few months, and then extended nocturnal. I never stopped working, travel, and am finishing my masters degree. Whoever says that all patients can't self-dialyze is generalizing without knowledge.
I do it by myself. I'm required to have an active life-alert button. I'm using Great Call because it's the cheapest. I think $19 a month. I've been at home for a few weeks by myself and really like it. I have run into big challenges (power outage etc.) already but the training helped me to deal with them. I've never had to use the life alert beyond testing.
I did it by myself for the most part in NJ. I did need my wife to come in for training at the beginning but she never placed a needle. She was trained in emergency procedures only for about 4 hours or so. Now I did have my kids around to call 911 in an emergency but they were never listed as helpers anywhere.
There is not a consensus in the renal community, backed by robust repeatable randomized controlled trials to guide individuals on what would be the best choice with regard to: treatment length, treatment frequency, Qb, Qd, filter size/design.
I was able to try various approaches to dialysis - 11 years incenter self care 3 days a week with treatment length increasing from 3.33 hour treatments (450 Qb) to 4.75 hour treatments (350 Qb), then after 11 years incenter, 6 treatments a week for 2.5 hours at time at home in the evening, and now treatments overnight for 6.5 hours, as often as I can stand. Based on my personal experience with these various choices, I found that dialyzing overnight as often as I can stand is the best option available to meet my renal replacement needs.
If an MD has something else in mind for how I should ‘do’ dialysis on what basis is she making that judgement? In the absence of evidence the patient’s preference should guide treatment, what standing does an MD have to object (aside from reimbursement, we’re talking medical efficacy) to the way I sustain myself? Are the conventional outcomes on conventional dialysis enough? In the absence of data why is one approach to dialysis advantaged to such a great degree?
John Agar, MD, noted that “Australia and New Zealand have both sustained logarithmically higher levels of home haemodialysis in comparison to the US with around 11% (Aust) and 18% (NZ) on home HD (using conventional machines - not NxStage - and predominantly nocturnal Home HD with high frequency, long hour regimens), while a bi-national additional 22% use home PD This leads to a summarized dual national mean penetrance of home therapies in the 35% range. Neither nation has ever required or encouraged carer support - indeed, it is and always has been the very opposite - as we believe in training the patient - and only the patient - and that carers are neither required nor sought. There are no (or rarely) any additive benefits from a carer—other than to keep the family functioning while the dialysis patient gets on with their well trained, well taught, self-care, self care that includes needling and all treatment responsibilities. ‘We' - on this side of the Big Pond' have often looked on, bemused and perplexed, at the antiquated and restrictive practices on your side of the Pacific, specifically south of the 48th parallel.”
Self-home-hemodialysis? Let’s remove the barriers, shall we?