View from the Chair: Solo Home HD—Overcoming the Fear Factor

Time flies, as they say. It’s been 6 ½ years since the U.S. Food and Drug Administration approved the NxStage machine for solo home HD during waking hours. In online discussions, some patients are wary of the responsibility of doing home HD without a partner, while others who have embraced it and prefer to be in control of their own treatments sing its praises.

The Paradox of Safety

Part of the challenge for patients that I often see in online forums is what I call the Paradox of Safety. On one hand, patients seem to believe they are safer dialyzing in-center, where the staff can take care of them:

• “I chose in center so I knew if anything went wrong the nurses and docs were there to help.”

• “I’m not a nurse and don’t do needles or blood. I’m not trained to know what to do in scary situations. I want to be in the clinic so the nurses can handle all that.”

Yet, most “scary situations” patients encounter with in-center HD center around:

1. The risk of exsanguination due to bloodline separation or a needle pulling out.

2. The side effects of intradialytic hypotension (IDH) due to aggressive ultrafiltration.

Neither of these situations are likely to occur at home:

1. Secure taping using the Chevron or Butterfly technique can prevent needle dislodgement.¹ Routine use of moisture-alert alarms such as RedSense® provide extra peace of mind and an early warning against line separation, while lower blood pump speeds (typically 250 to 350 mmHg/min. vs. 400 to 500) allow more time to respond in the event of a rare problem.



2. Low UF rates at home (< 10 mL/Hr/Kg) can dramatically reduce the risk of IDH and the associated headaches, nausea and vomiting, visual and auditory symptoms, dizziness—and organ stunning experienced by HD patients.² We encourage patients to use our free Ultrafiltration Rate Calculator before each HD treatment (home or in-center) to ensure a safe UFR—and we developed wipeable vinyl stickers with a QR code that can be safely applied to a dialysis machine to make it easy to remember and use the tool.

And, of course, solo home HD patients are thoroughly trained to react appropriately to scary situations, with training nurses simulating alarms and errors to give them hands-on experience and build muscle memory. But, most in-center patients are not informed about the extensive training that home HD patients receive. Sharing this information with them might help ease their fears.

Patient Responses to Solo Home HD

The enlightening quotes in the thread below were responses to this initial post:

Today, my dialysis training nurse (at Center) told me that she could train me to do hemodialysis at home by myself. This would occur while I'm at Center doing backup while my wife is in another state with my daughter at our condo. I don't mind going to Center for 5 to 6 weeks for backup, but feel it's unfair to the staff since this is an annual event. Then between Christmas and New Years, I do backup at Center (sometimes my wife needs a break from this stuff, being my care partner, and I support that). If I can do hemodialysis by myself, I think it's best for everyone. Plus, I really like the independence. I do have some concerns about things related to air in the blood lines, equipment failure (that happened 2 weeks ago at Center during backup), power failures, and things like that. Hopefully, I can learn to do solo treatment. I have some self-doubt at the moment.

First, Non-solo Patients who are Wary of Solo

• Its up to you but...the time you are incenter gives you a break from things like equipment issues and dealing with the mountains of garbage. By all means learn to self cannulate and run the machine on your own but if you do well on incenter and need a break yourself, don't be forced into solo. Its hardly unfair to the staff. They are paid for doing their job.

• I tried…..wasn’t for me. Always had to have hubby in the house to help if alarms went off.

• It’s doable but it can be a lot. Once you create a system/schedule and get used of the procedure it gets Easier.

• There are some dangers with doing it solo. One time at the end of my treatment I stood up to connect the hoses to return my blood and passed out and I only had the line half clamped (the line likes to bend away from the clamp sometimes)...woke up in a pile of blood. I was very lucky it wasn't fully opened. (NOTE: I’m willing to bet that going forward, this person fully clamped the lines before standing up.)

• I strongly suggest using the clinic for those breaks. I'm just finishing training for home hemo and will be at home next week. With the blood exchange, there is a potential for issues with BP as well as related nausea, dizziness and passing out. You need to jump up and down swapping lines, stabbing hubs, etc.  It really is a team effort...please rethink this...

Experts Who DO Solo Home HD Speak Up

• You will love solo.

• You will do great, just do it. Think of the independence too. They will train you how to deal with your questions and ask plenty.



• It’s easy. Been solo for 4 years now.

• I've been solo since day one. Love the freedom and independence. No major mishaps. Lots of stupid small ones which remind you to pay attention. I've dialyzed on a cruise, in hotel rooms, and drove cross country twice. And I am in my 70s. Still solo.

• I do it by myself. Like tonight I’m on the machine with my littlest next to me (7) my husband is playing with his band.

• As anything its an acquired skill.  A Repetitive medical procedure done the same, time after time without deviation. It really is as close as you can come to normal life with the disease. Living with kidney disease on dialysis can become very routine. It’s the best way to ready yourself for transplant too. It worked for me. You can do it too!! I was solo 6 1/2 years and nine overall.

• Air in blood is really the least of your concerns! Or should be! Once you know how to do it, you won’t believe you were ever nervous….and you’ll likely love the independence more than you can imagine!



• Solo for 10 yrs. I was loud and proud of my ability to stand on my own and not have to rely on anyone else. I was the boss and darned good at it. Sooo empowering!

• HHD is the BOMB!!! Just be aware there is a huge side effect of this training…having anyone else try to access your fistula is a deal breaker after doing it yourself for a while. You itch to take the cannula out of their hands and say “god, let me do it, you will hurt me.”  This will be for bloods too.

• I did solo home hemo for over a year. It was the best solution for me. Pd didn't work well for me and the clinic made it so I couldn't work full time. With home hemo I worked 40+ hours and did hemo 4 days a week.

• If I could do it I think anyone else could too. I'm a single mother with toddler twins and a pre teen. It's pro and cons but overall it's all on your time. Give it a shot. You can always go back to what's best for you. Best of luck

• Here in Australia I do home HD by myself as I have no partner have an 11 year old daughter and work full time. Being in Center for a year and a half was enough for me thank goodness for home HD. You get your life back!

• My care partner and I have been doing home for about 9 months. My care partner has determined this is too stressful and then it causes stress on me too.  I am learning solo now. It’s really not difficult for me and I’m 65. The training so for is how to conveniently place things to do your own treatment and emergency procedures. I already was doing most of the treatment steps even with my care partner, so this extra training was not that big of a stretch for me. You can do this—you’ve already conquered the difficult tasks!

• I do home Hemo without a caregiver. It does concern me with some power failures or no water. But that’s the nice thing about doing at home the freedom of changing my schedule at certain times or at times that there is an emergency. I’m not so worried about air in the lines because I prime the needles with a syringe filled with saline, just have to be careful of where the air bubble is and not push it all the way in. I really like it because of the flexibility of time that I am not fixed to a chair at the center at a certain time. My script is 4 days a week 4 hours every time. But since I do it at home and I refuse to wake up in the middle of the night to take the needles out. I have permission to do it 6 to 8 hours a night and that’s what I do and I get my sleep. It also helps me to do it so I can go back to work full-time.

• Echoing all that's been said before.... none of us could do this before training & we all had doubt...but that’s what the training is for. Easily the best dialysis decision I've made! You'll get there.

Conclusion

I’m with the expert solo patients on this one. Home HD can be prescribed in a physiological manner that reduces the risks of IDH, organ stunning, and sudden cardiac death. The schedule can be adjusted, as long as all prescribed treatments are done, so patients can work, travel, and pursue sports and hobbies they value. Assuming responsibility for home treatments is empowering and builds self-esteem and agency. It makes no sense to “protect” adults by preventing them from doing a safer form of HD than they would receive in-center!

Finally, we always need to keep in mind as context that Medicare never defines the role of a home HD care partner.* Therefore, if a solo home HD patient has someone in the home who can help, that person can “count” as a partner—for the benefit of corporate attorneys—but does not need to perform any HD-associated tasks. It is always handy to have someone who can help carry boxes, bring a snack, or pick up a dropped TV remote during treatment, of course.

*Decades ago, the legendary Dr. John Bower from Louisiana told Edith Oberley and me this story: He had a home HD patient whose husband had passed away, so at her next clinic visit he asked what she was doing for a care partner. “Oh, I do all of my treatment myself,” she replied. “So, I just ask any dumb old neighbor to come by and just keep me company.”